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Title:Which patients with heart failure should receive specialist palliative care?Authors:Ross T. Campbell1Mark C Petrie1,2Colette E. Jackson3Pardeep S Jhund1Ann Wright1Roy S. Gardner1,2Piotr Sonecki3Andrea Pozzi4Paula McSkimming5Alex McConnachie5Fiona Finlay3Patricia Davidson6Martin A. Denvir7Miriam J. Johnson8Karen J. Hogg9John J.V. McMurray1Affiliations:1 BHF Cardiovascular Research Centre, University of Glasgow, Glasgow, Scotland, UK; 2SNAHFS, Golden Jubilee National Hospital, Scotland, UK; 3Queen Elizabeth University Hospital, Scotland, UK.4 Hospital Papa Giovanni XXIII, Italy5Robertson Centre for Biostatistics, University of Glasgow,UK;6Johns Hopkins University, Baltimore, Maryland, USA.7Edinburgh University; Edinburgh, UK; 8 Hull York Medical School, University of Hull, Hull, UK;9 Glasgow Royal Infirmary, Scotland, UK.Correspondence:Professor John JV McMurrayInstitute of Cardiovascular and Medical SciencesBHF Glasgow Cardiovascular Research CentreUniversity of GlasgowGlasgow, G12 8TAUnited Kingdomjohn.mcmurray@glasgow.ac.ukTel:+44 141 330 3479 Fax:+44 141 330 6955Word count:3374ABSTRACTAimsWe investigated which patients with heart failure (HF) should receive specialist palliative care (SPC) by first creating a definition of need for SPC in patients hospitalised with HF using patient-reported outcome measures (PROMs) and then testing this definition using the outcome of days alive and out of hospital (DAOH). We also evaluated which baseline variables predicted need for SPC and whether those with this need received SPC. Methods and ResultsPROMs assessing quality-of-life (QoL), symptoms, and mood were administered at baseline and every four months. SPC need was defined as persistently severe impairment of any PROM without improvement (or severe impairment immediately preceding death). We then tested whether need for SPC, so defined, was reflected in DAOH, a measure which combines length-of-stay, days of hospital re-admission, and days lost due to death. Of 272 patients recruited, 74 (27%) met the definition of SPC needs. These patients lived one third fewer DAOH than those without SPC need (and less than a quarter of QoL-adjusted DAOH). A Kansas City Cardiomyopathy Questionnaire (KCCQ) Summary Score of <29 identified patients who subsequently had SPC needs (area under receiver operating characteristic curve 0.78). 24% of patients with SPC needs actually received SPC (N = 18). Conclusions A quarter of patients hospitalised with HF had a need for SPC and were identified by a low KCCQ score on admission. Those with SPC need spent many fewer DAOH and their DAOH were of significantly worse quality. Very few patients with SPC needs accessed SPC services. Abstract word count: 249Key words:Heart failurePalliative careBACKGROUNDPatients with heart failure (HF) have a major symptom burden, considerable impairment of quality of life (QoL) and high rates of admission, readmission and death.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1016/j.jpainsymman.2006.04.005", "ISSN" : "0885-3924", "PMID" : "16939845", "abstract" : "This study explored the prevalence and burden of symptoms in a community-based sample of patients aged >60 with symptomatic heart failure. Five hundred forty-two patients were recruited from UK general practices. Participants completed the Kansas City Cardiomyopathy Questionnaire every 3 months for 2 years. Data are presented at baseline alongside findings from in-depth interviews with patients and focus groups with primary care professionals. Over half the participants experienced breathlessness and/or fatigue daily. Factors identified as predictive of symptom prevalence and burden were as follows: being female; being staged at New York Heart Association Class III or IV; having symptoms of depression; and having two or more comorbidities. Interviews identified other symptoms, including chest pain, nausea, sleep disruption, and confusion. Participants felt that symptoms restricted activities of daily living. Health professionals reported symptom control as being a concern of patients and identified their own educational needs in this area. Findings suggest that symptom prevalence and burden for this population is high. Primary care professionals should offer comprehensive assessment and treatment of symptoms.", "author" : [ { "dropping-particle" : "", "family" : "Barnes", "given" : "Sarah", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gott", "given" : "Merryn", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Payne", "given" : "Sheila", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Parker", "given" : "Chris", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Seamark", "given" : "David", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gariballa", "given" : "Salah", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Small", "given" : "Neil", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of pain and symptom management", "id" : "ITEM-1", "issue" : "3", "issued" : { "date-parts" : [ [ "2006", "9" ] ] }, "page" : "208-16", "title" : "Prevalence of symptoms in a community-based sample of heart failure patients.", "type" : "article-journal", "volume" : "32" }, "uris" : [ "" ] }, { "id" : "ITEM-2", "itemData" : { "DOI" : "10.1161/CIRCULATIONAHA.108.812172", "ISSN" : "1524-4539", "PMID" : "19153268", "abstract" : "We examined whether population-level hospitalization rates for heart failure (HF) and subsequent survival have continued to improve since the turn of the century. We also examined trends in the prescribing of evidence-based pharmacological treatment for HF.", "author" : [ { "dropping-particle" : "", "family" : "Jhund", "given" : "Pardeep S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Macintyre", "given" : "Kate", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Simpson", "given" : "Colin R", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Lewsey", "given" : "James D", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Stewart", "given" : "Simon", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Redpath", "given" : "Adam", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Chalmers", "given" : "James W T", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Capewell", "given" : "Simon", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "V", "family" : "McMurray", "given" : "John J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Circulation", "id" : "ITEM-2", "issue" : "4", "issued" : { "date-parts" : [ [ "2009", "2", "3" ] ] }, "page" : "515-23", "title" : "Long-term trends in first hospitalization for heart failure and subsequent survival between 1986 and 2003: a population study of 5.1 million people.", "type" : "article-journal", "volume" : "119" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "^1,2", "plainTextFormattedCitation" : "1,2", "previouslyFormattedCitation" : "^1,2" }, "properties" : { }, "schema" : "" }1,2 Palliative care (PC) is defined by the World Health Organization (WHO) as an approach that improves the QoL of patients and their families facing a life-threatening illness.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "URL" : "", "accessed" : { "date-parts" : [ [ "2017", "1", "30" ] ] }, "author" : [ { "dropping-particle" : "", "family" : "The World Health Organisation", "given" : "", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "id" : "ITEM-1", "issued" : { "date-parts" : [ [ "0" ] ] }, "title" : "Definition of Palliative Care", "type" : "webpage" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "³", "plainTextFormattedCitation" : "3", "previouslyFormattedCitation" : "³" }, "properties" : { }, "schema" : "" }3 It seems intuitive that some or even many patients with HF would benefit from PC and several guidelines advocate use of PC, alongside usual care, in selected patients with HF.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1002/ejhf.592", "ISBN" : 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Developed with the special contribution ", "type" : "article-journal", "volume" : "18" }, "uris" : [ "" ] }, { "id" : "ITEM-2", "itemData" : { "ISBN" : "1524-4539 (Electronic)\\n0009-7322 (Linking)", "ISSN" : "1524-4539", "PMID" : "23741058", "abstract" : "HF is a complex clinical syndrome that results from any structural or functional impairment of ventricular filling or ejection of blood. The cardinal manifestations of HF are dyspnea and fatigue, which may limit exercise tolerance, and fluid retention, which may lead to pulmonary and/or splanchnic congestion and/or peripheral edema. Some patients have exercise intolerance but little evidence of fluid retention, whereas others complain primarily of edema, dyspnea, or fatigue. Because some patients present without signs or symptoms of volume overload, the term \u201cheart failure\u201d is preferred over \u201ccongestive heart failure.\u201d There is no single diagnostic test for HF because it is largely a clinical diagnosis based on a careful history and physical examination. The clinical syndrome of HF may result from disorders of the pericardium, myocardium, endocardium, heart valves, or great vessels or from certain metabolic abnormalities, but most patients with HF have symptoms due to impaired left ventricular (LV) myocardial function. It should be emphasized that HF is not synonymous with either cardiomyopathy or LV dysfunction; these latter terms describe possible structural or functional reasons for the development of HF. HF may be associated with a wide spectrum of LV functional abnormalities, which may range from patients with normal LV size and preserved EF to those with severe dilatation and/or markedly reduced EF. In most patients, abnormalities of systolic and diastolic dysfunction coexist, irrespective of EF. EF is considered important in classification of patients with HF because of differing patient demographics, comorbid conditions, prognosis, and response to therapies35 and because most clinical trials selected patients based on EF. EF values are dependent on the imaging technique used, method of analysis, and operator. Because other techniques may indicate abnormalities in systolic function among patients with a preserved EF, it is preferable to use the terms preserved or reduced EF over preserved or reduced systolic function. For the remainder of this guideline, we will consistently refer to HF with preserved EF and HF with reduced EF as HFpEF and HFrEF, respectively", "author" : [ { "dropping-particle" : "", "family" : "Yancy", "given" : "Clyde W.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Jessup", "given" : "Mariell", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bozkurt", "given" : "Biykem", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Butler", "given" : "Javed", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Casey", "given" : "Donald E.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Drazner", "given" : "Mark H.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Fonarow", "given" : "Gregg C.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Geraci", "given" : "Stephen A.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Horwich", "given" : "Tamara", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Januzzi", "given" : "James L.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Johnson", "given" : "Maryl R.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Kasper", "given" : "Edward K.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Levy", "given" : "Wayne C.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Masoudi", "given" : "Frederick A.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McBride", "given" : "Patrick E.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "V", "family" : "McMurray", "given" : "John J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Mitchell", "given" : "Judith E.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Peterson", "given" : "Pamela N.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Riegel", "given" : "Barbara", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Sam", "given" : "Flora", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Stevenson", "given" : "Lynne W.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Tang", "given" : "W. H Wilson", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Tsai", "given" : "Emily J.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Wilkoff", "given" : "Bruce L.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Guidelines", "given" : "American College of Cardiology Foundation/American Heart Association Task Force on Practice", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Circulation", "id" : "ITEM-2", "issue" : "16", "issued" : { "date-parts" : [ [ "2013", "10", "15" ] ] }, "page" : "e240-327", "title" : "2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on practice guidelines.", "type" : "article-journal", "volume" : "128" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "^4,5", "plainTextFormattedCitation" : "4,5", "previouslyFormattedCitation" : "^4,5" }, "properties" : { }, "schema" : "" }4,5 A recent policy statement goes further, recommending that PC is integrated into the routine care of all patients with advanced HF, with most needs managed by the usual care team.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1161/CIR.0000000000000438", "ISBN" : "0000000000000", "ISSN" : "15244539", "PMID" : "27503067", "abstract" : "The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients\u2019 values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient\u2019s family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.", "author" : [ { "dropping-particle" : "", "family" : "Braun", "given" : "Lynne T.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Grady", "given" : "Kathleen L.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Kutner", "given" : "Jean S.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Adler", "given" : "Eric", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Berlinger", "given" : "Nancy", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Boss", "given" : "Renee", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Butler", "given" : "Javed", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Enguidanos", "given" : "Susan", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Friebert", "given" : "Sarah", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gardner", "given" : "Timothy J.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Higgins", "given" : "Phil", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Holloway", "given" : "Robert", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Konig", "given" : "Madeleine", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Meier", "given" : "Diane", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Morrissey", "given" : "Mary Beth", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Quest", "given" : "Tammie E.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Wiegand", "given" : "Debra L.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Coombs-Lee", "given" : "Barbara", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Fitchett", "given" : "George", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gupta", "given" : "Charu", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Roach", "given" : "William H.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Circulation", "id" : "ITEM-1", "issue" : "11", "issued" : { "date-parts" : [ [ "2016" ] ] }, "page" : "e198-e225", "title" : "Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement from the American Heart Association/American Stroke Association", "type" : "article-journal", "volume" : "134" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "⁶", "plainTextFormattedCitation" : "6", "previouslyFormattedCitation" : "⁶" }, "properties" : { }, "schema" : "" }6 Those with more challenging PC needs should have access to specialist PC (SPC) providers working in collaboration the usual-care team.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1161/CIR.0000000000000438", "ISBN" : "0000000000000", "ISSN" : "15244539", "PMID" : "27503067", "abstract" : "The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients\u2019 values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient\u2019s family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.", "author" : [ { "dropping-particle" : "", "family" : "Braun", "given" : "Lynne T.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Grady", "given" : "Kathleen L.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Kutner", "given" : "Jean S.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Adler", "given" : "Eric", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Berlinger", "given" : "Nancy", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Boss", "given" : "Renee", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Butler", "given" : "Javed", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Enguidanos", "given" : "Susan", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Friebert", "given" : "Sarah", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gardner", "given" : "Timothy J.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Higgins", "given" : "Phil", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Holloway", "given" : "Robert", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Konig", "given" : "Madeleine", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Meier", "given" : "Diane", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Morrissey", "given" : "Mary Beth", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Quest", "given" : "Tammie E.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Wiegand", "given" : "Debra L.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Coombs-Lee", "given" : "Barbara", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Fitchett", "given" : "George", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gupta", "given" : "Charu", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Roach", "given" : "William H.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Circulation", "id" : "ITEM-1", "issue" : "11", "issued" : { "date-parts" : [ [ "2016" ] ] }, "page" : "e198-e225", "title" : "Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement from the American Heart Association/American Stroke Association", "type" : "article-journal", "volume" : "134" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "⁶", "plainTextFormattedCitation" : "6", "previouslyFormattedCitation" : "⁶" }, "properties" : { }, "schema" : "" }6 While PC is a treatment which, in principle, can be delivered by all health-care professionals, SPC is provided by multi-professional team who have undergone specialist training in PC. SPC services often include access to additional resources such as inpatient or outpatient hospice care. However, which patients should be selected is not clear and most clinicians do not find it easy to identify those who should be referred to SPC services.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "author" : [ { "dropping-particle" : "", "family" : "Hanratty", "given" : "Barbara", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Hibbert", "given" : "Derek", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Mair", "given" : "Frances", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "May", "given" : "Carl", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ward", "given" : "Christopher", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Capewell", "given" : "Simon", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Litva", "given" : "Andrea", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Corcoran", "given" : "Ged", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "id" : "ITEM-1", "issue" : "September", "issued" : { "date-parts" : [ [ "2002" ] ] }, "page" : "581-585", "title" : "Primary care focus group study", "type" : "article-journal", "volume" : "325" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "⁷", "plainTextFormattedCitation" : "7", "previouslyFormattedCitation" : "⁷" }, "properties" : { }, "schema" : "" }7 This issue has been highlighted as requiring further research in the European Society of Cardiology (ESC) Heart Failure Association position paper on PC use in HF.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1093/eurjhf/hfp041", "ISSN" : "1388-9842", "PMID" : "19386813", "abstract" : "Heart failure is a serious condition and equivalent to malignant disease in terms of symptom burden and mortality. At this moment only a comparatively small number of heart failure patients receive specialist palliative care. Heart failure patients may have generic palliative care needs, such as refractory multifaceted symptoms, communication and decision making issues and the requirement for family support. The Advanced Heart Failure Study Group of the Heart Failure Association of the European Society of Cardiology organized a workshop to address the issue of palliative care in heart failure to increase awareness of the need for palliative care. Additional objectives included improving the accessibility and quality of palliative care for heart failure patients and promoting the development of heart failure-orientated palliative care services across Europe. This document represents a synthesis of the presentations and discussion during the workshop and describes recommendations in the area of delivery of quality care to patients and families, education, treatment coordination, research and policy.", "author" : [ { "dropping-particle" : "", "family" : "Jaarsma", "given" : "Tiny", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Beattie", "given" : "James M", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ryder", "given" : "Mary", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Rutten", "given" : "Frans H", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McDonagh", "given" : "Theresa", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Mohacsi", "given" : "Paul", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Murray", "given" : "Scott a", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Grodzicki", "given" : "Thomas", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bergh", "given" : "Ingrid", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Metra", "given" : "Marco", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ekman", "given" : "Inger", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Angermann", "given" : "Christiane", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Leventhal", "given" : "Marcia", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Pitsis", "given" : "Antonis", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Anker", "given" : "Stefan D", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gavazzi", "given" : "Antonello", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ponikowski", "given" : "Piotr", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dickstein", "given" : "Kenneth", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Delacretaz", "given" : "Etienne", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Blue", "given" : "Lynda", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Strasser", "given" : "Florian", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McMurray", "given" : "John", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "European journal of heart failure", "id" : "ITEM-1", "issue" : "5", "issued" : { "date-parts" : [ [ "2009", "5" ] ] }, "page" : "433-43", "title" : "Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology.", "type" : "article-journal", "volume" : "11" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "⁸", "plainTextFormattedCitation" : "8", "previouslyFormattedCitation" : "⁸" }, "properties" : { }, "schema" : "" }8 Existing studies on this subject have many limitations. For example, most enrolled highly selected cohorts, did not follow patients over time (i.e. used one-off assessments) or did not fully characterise the patients studied (for example by recording the severity of HF or treatment received).ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1016/j.cardfail.2010.10.003", "ISSN" : "1532-8414", "PMID" : "21362532", "abstract" : "People with advanced heart failure (HF) have demonstrable supportive and palliative care needs. Effective service configuration and delivery should be informed by the views of those with personal experience and knowledge and should be based on available evidence. This systematic literature review aimed to collate qualitative and quantitative evidence on: 1) patients' perceived needs and experiences of care provision; and 2) the perspectives and understanding of health professionals on care delivery.", "author" : [ { "dropping-particle" : "", "family" : "Low", "given" : "Joe", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Pattenden", "given" : "Jill", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Candy", "given" : "Bridget", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Beattie", "given" : "James M", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Jones", "given" : "Louise", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of cardiac failure", "id" : "ITEM-1", "issue" : "3", "issued" : { "date-parts" : [ [ "2011", "3" ] ] }, "page" : "231-52", "publisher" : "Elsevier Inc", "title" : "Palliative care in advanced heart failure: an international review of the perspectives of recipients and health professionals on care provision.", "type" : "article-journal", "volume" : "17" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "⁹", "plainTextFormattedCitation" : "9", "previouslyFormattedCitation" : "⁹" }, "properties" : { }, "schema" : "" }9 Therefore, our goal was to develop and to test a simple and practical definition of who needs SPC in a cohort of near-consecutive patients admitted to hospital with worsening HF. We also compared patients who actually received PC with those in need of SPC, according to our definition.METHODSStudy patients and protocolThe design and rationale of this study are published.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1002/ehf2.12027", "ISBN" : "2055-5822", "ISSN" : "20555822", "PMID" : "28834644", "abstract" : "AIMS The primary aim of this study is to provide data to inform the design of a randomized controlled clinical trial (RCT) of a palliative care (PC) intervention in heart failure (HF). We will identify an appropriate study population with a high prevalence of PC needs defined using quantifiable measures. We will also identify which components a specific and targeted PC intervention in HF should include and attempt to define the most relevant trial outcomes. METHODS An unselected, prospective, near-consecutive, cohort of patients admitted to hospital with acute decompensated HF will be enrolled over a 2-year period. All potential participants will be screened using B-type natriuretic peptide and echocardiography, and all those enrolled will be extensively characterized in terms of their HF status, comorbidity, and PC needs. Quantitative assessment of PC needs will include evaluation of general and disease-specific quality of life, mood, symptom burden, caregiver burden, and end of life care. Inpatient assessments will be performed and after discharge outpatient assessments will be carried out every 4 months for up to 2.5 years. Participants will be followed up for a minimum of 1 year for hospital admissions, and place and cause of death. Methods for identifying patients with HF with PC needs will be evaluated, and estimates of healthcare utilisation performed. CONCLUSION By assessing the prevalence of these needs, describing how these needs change over time, and evaluating how best PC needs can be identified, we will provide the foundation for designing an RCT of a PC intervention in HF.", "author" : [ { "dropping-particle" : "", "family" : "Campbell", "given" : "Ross T", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Jackson", "given" : "Colette E", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Wright", "given" : "Ann", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gardner", "given" : "Roy S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ford", "given" : "Ian", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Davidson", "given" : "Patricia M", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Denvir", "given" : "Martin A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Hogg", "given" : "Karen J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Johnson", "given" : "Miriam J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Petrie", "given" : "Mark C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McMurray", "given" : "John J.V.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "ESC Heart Failure", "id" : "ITEM-1", "issue" : "1", "issued" : { "date-parts" : [ [ "2015", "3" ] ] }, "page" : "25-36", "title" : "Palliative care needs in patients hospitalized with heart failure (PCHF) study: rationale and design", "type" : "article-journal", "volume" : "2" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹⁰", "plainTextFormattedCitation" : "10", "previouslyFormattedCitation" : "¹⁰" }, "properties" : { }, "schema" : "" }10 In a single-centre serving as a community hospital, near-consecutive patients with suspected HF were screened for inclusion in the study between January 9th 2013 and December 1st 2014 (near-consecutive means that patients were recruited consecutively except when the single recruiting physician-investigator was on vacation). The ESC Guidelines were used to define HF.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1093/eurheartj/ehs104", "ISSN" : "1522-9645", "PMID" : "22611136", "author" : [ { "dropping-particle" : "V", "family" : "McMurray", "given" : "John J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Adamopoulos", "given" : "Stamatis", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Anker", "given" : "Stefan D", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Auricchio", "given" : "Angelo", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "B\u00f6hm", "given" : "Michael", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dickstein", "given" : "Kenneth", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Falk", "given" : "Volkmar", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Filippatos", "given" : "Gerasimos", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Fonseca", "given" : "C\u00e2ndida", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gomez-Sanchez", "given" : "Miguel Angel", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Jaarsma", "given" : "Tiny", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "K\u00f8ber", "given" : "Lars", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Lip", "given" : "Gregory Y H", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "Pietro", "family" : "Maggioni", "given" : "Aldo", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Parkhomenko", "given" : "Alexander", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Pieske", "given" : "Burkert M", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Popescu", "given" : "Bogdan a", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "R\u00f8nnevik", "given" : "Per K", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Rutten", "given" : "Frans H", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Schwitter", "given" : "Juerg", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Seferovic", "given" : "Petar", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Stepinska", "given" : "Janina", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Trindade", "given" : "Pedro T", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Voors", "given" : "Adriaan a", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Zannad", "given" : "Faiez", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Zeiher", "given" : "Andreas", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "European heart journal", "id" : "ITEM-1", "issue" : "14", "issued" : { "date-parts" : [ [ "2012", "7" ] ] }, "page" : "1787-847", "title" : "ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure 2012: The Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure 2012 of the European Society of Cardiology. Developed in collaboration with the Heart", "type" : "article-journal", "volume" : "33" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹¹", "plainTextFormattedCitation" : "11", "previouslyFormattedCitation" : "¹¹" }, "properties" : { }, "schema" : "" }11 Patients were eligible for inclusion if they had signs and symptoms of HF, a B-type natriuretic peptide (BNP) concentration greater than 100 pg/ml, and objective evidence of heart disease or dysfunction on echocardiography (either left ventricular systolic dysfunction, elevated left ventricular filling pressures, or significant valve disease). Patients were excluded if they were unable or unwilling to provide written informed consent. During the index admission, medical and drug history, physical examination, laboratory, and echocardiographic results were recorded. A physician assessment of performance status was made using the Australia modified Karnofsky Performance Status (AKPS) score, an “end-of-the-bed” assessment ranging between 0-100, with lower scores indicating lower performance status.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1186/1472-684X-4-7", "ISBN" : "1472684X", "ISSN" : "1472-684X", "PMID" : "16283937", "abstract" : "BACKGROUND The Karnofsky Performance Status (KPS) is a gold standard scale. The Thorne-modified KPS (TKPS) focuses on community-based care and has been shown to be more relevant to palliative care settings than the original KPS. The Australia-modified KPS (AKPS) blends KPS and TKPS to accommodate any setting of care. METHODS Performance status was measured using all three scales for palliative care patients enrolled in a randomized controlled trial in South Australia. Care occurred in a range of settings. Survival was defined from enrollment to death. RESULTS Ratings were collected at 1600 timepoints for 306 participants. The median score on all scales was 60. KPS and AKPS agreed in 87% of ratings; 79% of disagreements occurred within 1 level on the 11-level scales. KPS and TKPS agreed in 76% of ratings; 85% of disagreements occurred within one level. AKPS and TKPS agreed in 85% of ratings; 87% of disagreements were within one level. Strongest agreement occurred at the highest levels (70-90), with greatest disagreement at lower levels (< or =40). Kappa coefficients for agreement were KPS-TKPS 0.71, KPS-AKPS 0.84, and AKPS-TKPS 0.82 (all p < 0.001). Spearman correlations with survival were KPS 0.26, TKPS 0.27 and AKPS 0.26 (all p < 0.001). AKPS was most predictive of survival at the lower range of the scale. All had longitudinal test-retest validity. Face validity was greatest for the AKPS. CONCLUSION The AKPS is a useful modification of the KPS that is more appropriate for clinical settings that include multiple venues of care such as palliative care.", "author" : [ { "dropping-particle" : "", "family" : "Abernethy", "given" : "Amy P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Shelby-James", "given" : "Tania", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Fazekas", "given" : "Belinda S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Woods", "given" : "David", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Currow", "given" : "David C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "BMC palliative care", "id" : "ITEM-1", "issue" : "1", "issued" : { "date-parts" : [ [ "2005", "11", "12" ] ] }, "page" : "7", "title" : "The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481].", "type" : "article-journal", "volume" : "4" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹²", "plainTextFormattedCitation" : "12", "previouslyFormattedCitation" : "¹²" }, "properties" : { }, "schema" : "" }12 A HF-specific assessment of patients’ needs, using the Needs Assessment Tool- Progressive Disease- Heart Failure (NAT-PD-HF), was also completed during index admission,ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1016/j.jpainsymman.2012.05.009", "ISBN" : "1873-6513", "ISSN" : "08853924", "PMID" : "23017612", "abstract" : "Context: Understanding the types and extent of need is critical to informing needs-based care for people with chronic heart failure (CHF). Objectives: To explore the psychometric quality of a newly developed rapid screening measure to assess the supportive and palliative care needs of people with CHF. Methods: A convenience sample of multidisciplinary health professionals working in heart failure care was invited to comment, via an online survey and consultation, on suitability and required modifications to a validated cancer care needs assessment measure to inform the support and palliative care needs of patients with CHF and their caregivers. Psychometric testing was then undertaken with 52 patients with CHF recruited from a multidisciplinary heart failure service to explore inter-rater reliability and concurrent validity of the newly adapted Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF). Results: Health professionals (n = 21) rated the tool as easy to administer, comprehensive, and relevant for the CHF population. Prevalence- and bias-adjusted kappa values indicated good agreement between pairs of raters for each item in the NAT: PD-HF (range 0.54-0.90). Participants indicating a higher severity of concern in the NAT: PD-HF physical, daily living, and spiritual items reported significantly higher Heart Failure Needs Assessment Questionnaire physical and existential scores. Conclusion: This study provides preliminary evidence for the NAT: PD-HF as a potential strategy for identifying and informing the management of physical and psychosocial issues experienced by people with CHF. Further work is needed to examine additional psychometrics, benefits relating to unnecessary symptom burden, futile treatments, and admissions to hospital. ?? 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.", "author" : [ { "dropping-particle" : "", "family" : "Waller", "given" : "Amy", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Girgis", "given" : "Afaf", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Davidson", "given" : "Patricia M.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Newton", "given" : "Phillip J.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Lecathelinais", "given" : "Christophe", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "MacDonald", "given" : "Peter S.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Hayward", "given" : "Christopher S.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Currow", "given" : "David C.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of Pain and Symptom Management", "id" : "ITEM-1", "issue" : "5", "issued" : { "date-parts" : [ [ "2013" ] ] }, "page" : "912-925", "title" : "Facilitating needs-based support and palliative care for people with chronic heart failure: Preliminary evidence for the acceptability, inter-rater reliability, and validity of a needs assessment tool", "type" : "article-journal", "volume" : "45" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹³", "plainTextFormattedCitation" : "13", "previouslyFormattedCitation" : "¹³" }, "properties" : { }, "schema" : "" }13 with patients deemed to have important needs if they were assessed as having “significant concern” on any of the NAT-PD-HF patient wellbeing domains. Care-giver burden was assessed using the Zarit Burden Interview (ZBI) questionnaire.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1093/geront/20.6.649", "ISBN" : "0016-9013 (Print)\\r0016-9013 (Linking)", "ISSN" : "0016-9013, 1758-5341", "PMID" : "7203086", "abstract" : "Factors contributing to feelings of burden of caregivers of elderly persons with senile dementia were studied. The amount of burden of caregivers was found to be less when more visits were paid to the dementia patient by other relatives. Severity of behavioral problems was not associated with higher levels of burden. The results suggest the importance of providing support to caregivers as a critical step in the community care of elderly persons with dementia.", "author" : [ { "dropping-particle" : "", "family" : "Zarit, S.H., Reever, K.E., Bach-Peterson", "given" : "J.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Gerontologist", "id" : "ITEM-1", "issued" : { "date-parts" : [ [ "1980" ] ] }, "page" : "649-655", "title" : "Relatives of the impaired elderly: Correlates of feeling of burden", "type" : "article-journal", "volume" : "20" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹⁴", "plainTextFormattedCitation" : "14", "previouslyFormattedCitation" : "¹⁴" }, "properties" : { }, "schema" : "" }14 Patients reported outcome measures (PROMs)Patients completed a variety of PROMs chosen to quantify different potential PC needs including QoL, symptom burden, and mood disturbance. Disease-related QoL was assessed by the Kansas City Cardiomyopathy Questionnaire (KCCQ) and general QoL using the Short Form-12 (SF-12) questionnaire.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "ISSN" : "0735-1097", "PMID" : "10758967", "abstract" : "OBJECTIVES To create a valid, sensitive, disease-specific health status measure for patients with congestive heart failure (CHF). BACKGROUND Quantifying health status is becoming increasingly important for CHF. The Kansas City Cardiomyopathy Questionnaire (KCCQ) is a new, self-administered, 23-item questionnaire that quantifies physical limitations, symptoms, self-efficacy, social interference and quality of life. METHODS To establish the performance characteristics of the KCCQ, two distinct patient cohorts were recruited: 70 stable and 59 decompensated CHF patients with ejection fractions of <40. Upon entry into the study, patients were administered the KCCQ, the Minnesota Living with Heart Failure Questionnaire and the Short Form-36 (SF-36). Questionnaires were repeated three months later. RESULTS Convergent validity of each KCCQ domain was documented by comparison with available criterion standards (r = 0.46 to 0.74; p < 0.001 for all). Among those with stable CHF who remained stable by predefined criteria (n = 39), minimal changes in KCCQ domains were detected over three months of observation (mean change = 0.8 to 4.0 points, p = NS for all). In contrast, large changes in score were observed among patients whose decompensated CHF improved three months later (n = 39; mean change = 15.4 to 40.4 points, p < 0.01 for all). The sensitivity of the KCCQwas substantially greater than that of the Minnesota Living with Heart Failure and the SF-36 questionnaires. CONCLUSIONS The KCCQis a valid, reliable and responsive health status measure for patients with CHF and may serve as a clinically meaningful outcome in cardiovascular research, patient management and quality assessment.", "author" : [ { "dropping-particle" : "", "family" : "Green", "given" : "C P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Porter", "given" : "Charles B", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bresnahan", "given" : "Dennis R", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Spertus", "given" : "John A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of the American College of Cardiology", "id" : "ITEM-1", "issue" : "5", "issued" : { "date-parts" : [ [ "2000", "4" ] ] }, "page" : "1245-55", "title" : "Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure.", "type" : "article-journal", "volume" : "35" }, "uris" : [ "" ] }, { "id" : "ITEM-2", "itemData" : { "ISBN" : "1355-8196 (Print)\\r1355-8196 (Linking)", "ISSN" : "1355-8196", "PMID" : "10180648", "abstract" : "OBJECTIVES: The 36 item short form health survey (SF-36) has proved to be of use in a variety of settings where a short generic health measure of patient-assessed outcome is required. This measure can provide an eight dimension profile of health status, and two summary scores assessing physical function and mental well-being. The developers of the SF-36 in America have developed algorithms to yield the two summary component scores in a questionnaire containing only one-third of the original 36 items, the SF-12. This paper documents the construction of the UK SF-12 summary measures from a large-scale dataset from the UK in which the SF-36, together with other questions on health and lifestyles, was sent to randomly selected members of the population. Using these data we attempt here to replicate the findings of the SF-36 developers in the UK setting, and then to assess the use of SF-12 summary scores in a variety of clinical conditions. METHODS: Factor analytical methods were used to derive the weights used to construct the physical and mental component scales from the SF-36. Regression methods were used to weight the 12 items recommended by the developers to construct the SF-12 physical and mental component scores. This analysis was undertaken on a large community sample (n = 9332), and then the results of the SF-36 and SF-12 were compared across diverse patient groups (Parkinson's disease, congestive heart failure, sleep apnoea, benign prostatic hypertrophy). RESULTS: Factor analysis of the SF-36 produced a two factor solution. The factor loadings were used to weight the physical component summary score (PCS-36) and mental component summary score (MCS-36). Results gained from the use of these measures were compared with results gained from the PCS-12 and MCS-12, and were found to be highly correlated (PCS: rho = 0.94, p < 0.001; MCS: rho = 0.96, p < 0.001), and produce remarkably similar results, both in the community sample and across a variety of patient groups. CONCLUSIONS: The SF-12 is able to produce the two summary scales originally developed from the SF-36 with considerable accuracy and yet with far less respondent burden. Consequently, the SF-12 may be an instrument of choice where a short generic measure providing summary information on physical and mental health status is required.", "author" : [ { "dropping-particle" : "", "family" : "Jenkinson", "given" : "C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Layte", "given" : "R", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of health services research & policy", "id" : "ITEM-2", "issue" : "1", "issued" : { "date-parts" : [ [ "1997" ] ] }, "page" : "14-18", "title" : "Development and testing of the UK SF-12 (short form health survey).", "type" : "article-journal", "volume" : "2" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "^15,16", "plainTextFormattedCitation" : "15,16", "previouslyFormattedCitation" : "^15,16" }, "properties" : { }, "schema" : "" }15,16 Symptom burden was assessed by the Edmonton Symptom Assessment Scale (ESAS).ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "ISSN" : "0008-543X", "PMID" : "10813730", "abstract" : "The Edmonton Symptom Assessment Scale (ESAS) is a nine-item patient-rated symptom visual analogue scale developed for use in assessing the symptoms of patients receiving palliative care. The purpose of this study was to validate the ESAS in a different population of patients.", "author" : [ { "dropping-particle" : "", "family" : "Chang", "given" : "V T", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Hwang", "given" : "S S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Feuerman", "given" : "M", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Cancer", "id" : "ITEM-1", "issue" : "9", "issued" : { "date-parts" : [ [ "2000", "5", "1" ] ] }, "page" : "2164-71", "title" : "Validation of the Edmonton Symptom Assessment Scale.", "type" : "article-journal", "volume" : "88" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹⁷", "plainTextFormattedCitation" : "17", "previouslyFormattedCitation" : "¹⁷" }, "properties" : { }, "schema" : "" }17 Mood disturbance was assessed using the Hospital Anxiety and Depression Scale (HADS).ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1016/S0016-5085(01)83173-5", "ISSN" : "0001690X", "PMID" : "6880820", "abstract" : "(1983).. , 67, 361-370. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67: 361370.", "author" : [ { "dropping-particle" : "", "family" : "Zigmond", "given" : "a S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Snaith", "given" : "R P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Acta Psychiatrica Scandinavica", "id" : "ITEM-1", "issue" : "361-370", "issued" : { "date-parts" : [ [ "1983" ] ] }, "page" : "361-370", "title" : "The hospital anxiety and depression scale (HADS).", "type" : "article-journal", "volume" : "67" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹⁸", "plainTextFormattedCitation" : "18", "previouslyFormattedCitation" : "¹⁸" }, "properties" : { }, "schema" : "" }18 At every study assessment all PROMs were repeated. PROMs were categorised according to severity. The derivation and testing of these PROMS in HF (as well as definitions of severity where available) are described in Table 1. Patients were reviewed every 4 months (for a minimum of 8 and up to a maximum of 28 months). Study visits took place at the study centre or in the patients’ own home, if they were too frail to attend the study centre, or expressed a preference for this. Patients were also followed-up for a minimum of 12 months and up to a maximum 21 months using electronic medical record linkage to document re-admission and death. As described previously, the Scottish National Health Service electronic medical record linkage enables follow-up for death (including location) and hospitalisation (including cause).ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "ISSN" : "1524-4539", "PMID" : "10973841", "abstract" : "BACKGROUND Contemporary survival in unselected patients with heart failure and the population impact of newer therapies have not been widely studied. Therefore, we have documented case-fatality rates (CFRs) over a recent 10-year period. METHODS AND RESULTS In Scotland, all hospitalizations and deaths are captured on a single database. We have studied case fatality in all patients admitted with a principal diagnosis of heart failure from 1986 to 1995. A total of 66 547 patients (47% male) were studied. Median age was 72 years in men and 78 years in women. Crude CFRs at 30 days and at 1, 5, and 10 years were 19.9%, 44.5%, 76.5%, and 87.6%, respectively. Median survival was 1.47 years in men and 1.39 years in women (2.47 and 2. 36 years, respectively, in those surviving 30 days). Age had a powerful effect on survival, and sex, comorbidity, and deprivation had modest effects. One-year CF was 24.2% in those aged <55 years and 58.1% in those aged >84 years. After adjustment, 30-day CFRs fell between 1986 and 1995, by 26% (95% CI 15 to 35, P<0.0001) in men and 17% (95% CI 6 to 26, P<0.0001) in women. Longer term CFRs fell by 18% (95% CI 13 to 24, P<0.0001) in men and 15% (95% CI 10 to 20, P<0.0001) in women. Median survival increased from 1.23 to 1. 64 years. CONCLUSIONS Heart failure CF is much higher in the general population than in clinical trials, especially in the elderly. Although survival has increased significantly over the last decade, there is still much room for improvement.", "author" : [ { "dropping-particle" : "", "family" : "MacIntyre", "given" : "K", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Capewell", "given" : "S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Stewart", "given" : "S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Chalmers", "given" : "J W", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Boyd", "given" : "J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Finlayson", "given" : "A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Redpath", "given" : "A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Pell", "given" : "J P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McMurray", "given" : "J J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Circulation", "id" : "ITEM-1", "issue" : "10", "issued" : { "date-parts" : [ [ "2000", "9", "5" ] ] }, "page" : "1126-31", "title" : "Evidence of improving prognosis in heart failure: trends in case fatality in 66 547 patients hospitalized between 1986 and 1995.", "type" : "article-journal", "volume" : "102" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹⁹", "plainTextFormattedCitation" : "19", "previouslyFormattedCitation" : "¹⁹" }, "properties" : { }, "schema" : "" }19 Electronic patient records, PC registries, and hospice records were searched to identify participants who accessed PC services. The study team were not involved, nor did they influence the care of patients. Patients admitted to hospital due to HF were treated as per current guidelines.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1002/ejhf.592", "ISBN" : "1879-0844 (Electronic) 1388-9842 (Linking)", "ISSN" : "1879-0844", "PMID" : "27207191", "author" : [ { "dropping-particle" : "", "family" : "Ponikowski", "given" : "Piotr", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Voors", "given" : "Adriaan A.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Anker", "given" : "Stefan D.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bueno", "given" : "H\u00e9ctor", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Cleland", "given" : "John G F", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Coats", "given" : "Andrew J S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Falk", "given" : "Volkmar", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gonz\u00e1lez-Juanatey", "given" : "Jos\u00e9 Ram\u00f3n", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Harjola", "given" : "Veli-Pekka", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Jankowska", "given" : "Ewa A.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Jessup", "given" : "Mariell", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Linde", "given" : "Cecilia", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Nihoyannopoulos", "given" : "Petros", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Parissis", "given" : "John T.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Pieske", "given" : "Burkert", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Riley", "given" : "Jillian P.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Rosano", "given" : "Giuseppe M C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ruilope", "given" : "Luis M.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ruschitzka", "given" : "Frank", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Rutten", "given" : "Frans H.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Meer", "given" : "Peter", "non-dropping-particle" : "van der", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Authors/Task Force Members", "given" : "", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Document Reviewers", "given" : "", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "European journal of heart failure", "id" : "ITEM-1", "issue" : "8", "issued" : { "date-parts" : [ [ "2016", "8" ] ] }, "page" : "891-975", "title" : "2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: The Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC). Developed with the special contribution ", "type" : "article-journal", "volume" : "18" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "⁴", "plainTextFormattedCitation" : "4", "previouslyFormattedCitation" : "⁴" }, "properties" : { }, "schema" : "" }4 In our area usual practice is for patients to attend follow-up clinic appointments with either a cardiologist or general physician, as well as a general practitioner, and a HF liaison nurse. The specific care patients received following discharge was not recorded as part of this study.The study protocol was approved by the local Ethics Committee and the study was conducted according to the principles of the Declaration of Helsinki. All participants provided written, informed consent. We attest that we have obtained appropriate permissions and paid any required fees for use of copyright protected materials.Definition of need for SPC We defined need for SPC as severe impairment of any PROM persisting for 2 or more consecutive study visits without improvement, or severe impairment of any PROM followed by death before the PROM was repeated i.e. no improvement was reported in the PROM before death (Figure 1). Patients who missed a study assessment were assumed to have the same PROM score as previously recorded, that is, we used last observation carried forward. There was no limit on how far forward observations were carried.Testing of definition of need for SPC against days alive and out of hospital (DAOH) and QoL-adjusted DAOHOur definition of need for SPC was tested against DAOH ,QoL-adjusted, symptom-adjusted, and mood-adjusted DAOH. DAOH is a measure that takes account of the length of the index hospitalisation, days of re-hospitalisation, days of life lost due to death. For example, a patient followed for a fixed period of 180 days with 10 days of index hospitalization, two further admissions of 10 and 15 day’s duration, respectively, followed by death at day 135 would have 100 DAOH (out of a possible 180). To calculate QoL adjusted DAOH, the number of DAOH between each study assessment was calculated (Figure S1, Supplementary Appendix) and these days were then adjusted according to the KCCQ overall summary score, to quality-weight each DAOH. A higher KCCQ score equates to better QoL and lower score to poorer QoL, with a range of 0-100. For example, if a patient spent 100 DAOH and had a KCCQ summary score of 75 consistently over that period, this would be calculated as 100 x 0.75 QoL-adjusted DAOH, equating to 75 days of good health spent out of hospital, or 25 of 100 days lost due to poor QoL. The proportion of QoL-adjusted DAOH compared with the potential DAOH (all alive and in full health, and without hospital admission) during the whole study was calculated for each patient. No patient was excluded from this analysis, as missing KCCQ scores were carried forward from the previous study assessment. This analysis was then repeated, adjusting DAOH for symptom burden using the ESAS summary score, HADS summary score, and both the physical and mental summary QoL scores of the SF-12, instead of KCCQ. Statistical AnalysisContinuous variables are expressed as median [interquartile range], unless otherwise specified. Comparisons of categorical variables were performed using Fisher’s exact test, and continuous variables were compared using the Mann-Whitney U test. Multivariable logistic regression was used to calculate odds ratios and 95% confidence intervals for baseline variables associated with the need for SPC. Baseline variables tested include common markers of prognosis,ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1016/j.jchf.2014.04.008", "ISBN" : "2213-1787", "ISSN" : "22131779", "PMID" : "25194291", "abstract" : "Objectives: This study sought to review the literature for risk prediction models in patients with heart failure and to identify the most consistently reported independent predictors of risk across models. Background: Risk assessment provides information about patient prognosis, guides decision making about the type and intensity of care, and enables better understanding of provider performance. Methods: MEDLINE and EMBASE were searched from January 1995 to March 2013, followed by hand searches of the retrieved reference lists. Studies were eligible if they reported at least 1 multivariable model for risk prediction of death, hospitalization, or both in patients with heart failure and reported model performance. We ranked reported individual risk predictors by their strength of association with the outcome and assessed the association of model performance with study characteristics. Results: Sixty-four main models and 50 modifications from 48 studies met the inclusion criteria. Of the 64 main models, 43 models predicted death, 10 hospitalization, and 11 death or hospitalization. The discriminatory ability of themodels for prediction of death appeared to be higher than that for prediction of death or hospitalization or prediction of hospitalization alone (p= 0.0003). A wide variation between studies in clinical settings, population characteristics, sample size, and variables used for model development was observed, but these features were not significantly associated with the discriminatory performance of the models. A few strong predictors emerged for prediction of death; the most consistently reported predictors were age, renal function, blood pressure, blood sodium level, left ventricular ejection fraction, sex, brain natriuretic peptide level, New York Heart Association functional class, diabetes, weight or body mass index, and exercise capacity. Conclusions: There are several clinically useful and well-validated death prediction models in patients with heartfailure. Although the studies differed in many respects, the models largely included a few common markers ofrisk.", "author" : [ { "dropping-particle" : "", "family" : "Rahimi", "given" : "Kazem", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bennett", "given" : "Derrick", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Conrad", "given" : "Nathalie", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Williams", "given" : "Timothy M.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Basu", "given" : "Joyee", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dwight", "given" : "Jeremy", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Woodward", "given" : "Mark", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Patel", "given" : "Anushka", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McMurray", "given" : "John", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "MacMahon", "given" : "Stephen", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "JACC: Heart Failure", "id" : "ITEM-1", "issue" : "5", "issued" : { "date-parts" : [ [ "2014" ] ] }, "page" : "440-446", "title" : "Risk prediction in patients with heart failure: A systematic review and analysis", "type" : "article-journal", "volume" : "2" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "²⁰", "plainTextFormattedCitation" : "20", "previouslyFormattedCitation" : "²⁰" }, "properties" : { }, "schema" : "" }20 performance status assessment (using the AKPS),ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1186/1472-684X-4-7", "ISBN" : "1472684X", "ISSN" : "1472-684X", "PMID" : "16283937", "abstract" : "BACKGROUND The Karnofsky Performance Status (KPS) is a gold standard scale. The Thorne-modified KPS (TKPS) focuses on community-based care and has been shown to be more relevant to palliative care settings than the original KPS. The Australia-modified KPS (AKPS) blends KPS and TKPS to accommodate any setting of care. METHODS Performance status was measured using all three scales for palliative care patients enrolled in a randomized controlled trial in South Australia. Care occurred in a range of settings. Survival was defined from enrollment to death. RESULTS Ratings were collected at 1600 timepoints for 306 participants. The median score on all scales was 60. KPS and AKPS agreed in 87% of ratings; 79% of disagreements occurred within 1 level on the 11-level scales. KPS and TKPS agreed in 76% of ratings; 85% of disagreements occurred within one level. AKPS and TKPS agreed in 85% of ratings; 87% of disagreements were within one level. Strongest agreement occurred at the highest levels (70-90), with greatest disagreement at lower levels (< or =40). Kappa coefficients for agreement were KPS-TKPS 0.71, KPS-AKPS 0.84, and AKPS-TKPS 0.82 (all p < 0.001). Spearman correlations with survival were KPS 0.26, TKPS 0.27 and AKPS 0.26 (all p < 0.001). AKPS was most predictive of survival at the lower range of the scale. All had longitudinal test-retest validity. Face validity was greatest for the AKPS. CONCLUSION The AKPS is a useful modification of the KPS that is more appropriate for clinical settings that include multiple venues of care such as palliative care.", "author" : [ { "dropping-particle" : "", "family" : "Abernethy", "given" : "Amy P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Shelby-James", "given" : "Tania", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Fazekas", "given" : "Belinda S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Woods", "given" : "David", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Currow", "given" : "David C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "BMC palliative care", "id" : "ITEM-1", "issue" : "1", "issued" : { "date-parts" : [ [ "2005", "11", "12" ] ] }, "page" : "7", "title" : "The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481].", "type" : "article-journal", "volume" : "4" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹²", "plainTextFormattedCitation" : "12", "previouslyFormattedCitation" : "¹²" }, "properties" : { }, "schema" : "" }12 needs assessment (using the NAT-PD-HF) and PROM summary scores. Cut-off scores and area under the receiver operator curve for continuous variables identified as predictors of SPC needs were calculated using the Youden method.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1002/1097-0142(1950)3:1<32::AID-CNCR2820030106>3.0.CO;2-3", "ISBN" : "0008-543X (Print)\\r0008-543X (Linking)", "ISSN" : "10970142", "PMID" : "15405679", "abstract" : "... Article. You have full text access to this OnlineOpen article Index for rating diagnostic tests . WJ Youden Ph.D. ... How to Cite. Youden, WJ (1950), Index for rating diagnostic tests . Cancer, 3: 32\u201335. doi: 10.1002/1097-0142(1950)3:1<32::AID-CNCR2820030106>3.0.CO;2-3. ...", "author" : [ { "dropping-particle" : "", "family" : "Youden", "given" : "W. J.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Cancer", "id" : "ITEM-1", "issue" : "1", "issued" : { "date-parts" : [ [ "1950" ] ] }, "page" : "32-35", "title" : "Index for rating diagnostic tests", "type" : "article-journal", "volume" : "3" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "²¹", "plainTextFormattedCitation" : "21", "previouslyFormattedCitation" : "²¹" }, "properties" : { }, "schema" : "" }21 All statistical analyses were performed using SAS? v9.2. RESULTS829 near-consecutive patients with suspected HF were screened for inclusion between January 9th 2013 and December 1st 2014. Of these, 272 met the inclusion criteria and agreed to participate in the study (Supplementary Appendix, Figure S2). The median time from admission to baseline assessment was 2 [Q1-Q3, 2-4] days. Median length of stay was 9 [5-15] days. Median follow-up via record-linkage was 775 [608-913] days. There were 103 (38%) deaths during follow-up, 4 during the index hospital admission. 217 (80%) patients were readmitted to hospital during follow-up (for any reason). In total, 963 individual patient assessments were completed. 38% of all study visits were carried out in patients’ homes. A detailed description of the proportion of patients attending each study assessment, including the number of patients with missing data for each PROM at each time point, is provided in supplementary appendix table S1. The proportion of patients with missing PROM data at each study assessment for reasons other than death, increased over time, from 19% at month 4 to 33% at month 24. No patients were lost to follow-up for vital status.PROMs at baselineThe findings for the individual PROMs at baseline are detailed in Table 2. During the index hospitalisation, 114 (42%) patients had severe impairment of at least one PROM (Supplementary Appendix Table S2). More patients had a severely reduced KCCQ than a severe score for any other PROM. Of the 114 patients who scored severe in any PROM at baseline, 55 (48%) did so in two or more PROMs. Patients in the group defined as needing SPC (see below) had worse median summary scores and a higher proportion had a severely impaired score for each PROM.Symptom burden, assessed using the ESAS scale, was high during the index admission (Figure 2), and patients with SPC needs reported higher burden for each individual symptom, except nausea (figure 3). PROMs during follow-upThe proportion of patients at each study assessment who scored severe for each PROM, and the number of PROMs with a severe scoring is shown in Supplementary Appendix Table S2. Compared with baseline, the percentage of patients who were classified as severe for any PROM reduced during follow-up, but ranged between 26 and 36%. Of these patients, most had severe impairment of disease-related QoL as assessed by the KCCQ, followed by impairment of general QoL as assessed by the SF-12 Physical, and then symptom burden as assessed by the ESAS. Prevalence of SPC needsOf the 272 patients in this study, 74 (27%) had SPC needs using the definition described in the Methods (i.e. persistently [≥ 2 consecutive study visits] severe impairment of any PROM without improvement or severe impairment of any PROM followed by death before further PROMs could be recorded). Of the 74 patients with SPC needs, 47 (64%) met our definition by having severe impairment of at least one PROM preceding death and 46 (62%) qualified by having persistently severe impairment of any PROM without improvement (20 of 46 of the latter patients died during follow-up).Clinical characteristics of patients with a need for SPC The clinical characteristics of those with and without a need for SPC are detailed in Table 3. Patients with a need for SPC had a worse New York Heart Association (NYHA) class distribution prior to admission, and a higher proportion of patients had been hospitalised in the preceding six months for worsening HF, compared to those without SPC needs. Physician assessed performance status (using the AKPS) was lower (i.e. worse) in patients with SPC needs and a higher proportion of those with SPC needs were classified by a physician as having significant needs using the NAT-PD-HF. Of the caregivers interviewed, 93 (34%) were available and/or willing to complete the ZBI; for patients with SPC needs, caregivers recorded worse overall scores and a higher proportion of caregivers reported a moderate-to-severe burden in the group defined as having a need for SPC, compared to those without such a need.A greater proportion of those who developed SPC needs were men, although this difference was not statistically significant (p=0.076). Patients who developed SPC needs were also younger (p = 0.041) and had a more frequent history of myocardial infarction (p=0.004) and diabetes (p=0.029), but did not have more total comorbidity overall and did not have a significantly higher BNP or lower eGFR or haemoglobin (but did have a lower systolic blood pressure p = 0.018). A longer standing diagnosis of HF (>2 years) was no more common in patients with a need for SPC, compared to those without. Testing the definition of need for SPC - days spent alive and out of hospitalPatients meeting our definition of needing SPC spent one third fewer DAOH (not adjusted for QOL) than those without a need for SPC; specifically, the median number of DAOH in patients with a need for SPC was 402 [171-598] compared with 635 [419-802] for those not meeting the definition of needing SPC (p<0.001). After adjusting each DAOH for symptom burden using the ESAS, patients with SPC needs had under half the number of symptom-adjusted DAOH as those who did not meet the definition of SPC needs (Figure 4). Patients with SPC needs had a similar reduction in QoL and mood-adjusted DAOH, using the mental and physical components of the SF-12 and HADS, respectively. After adjusting each DAOH for impairment of QoL using the KCCQ, patients with SPC needs enjoyed less than one quarter of the number of QoL-adjusted DAOH of those without a need for SPC. Prediction of which patients need SPC Results of the multivariable analysis of baseline prognostic markers using the MAGGIC (Meta-Analysis Global Group in Chronic Heart Failure risk model),ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1093/eurheartj/ehs337", "ISBN" : "1522-9645 (Electronic)\\r0195-668X (Linking)", "ISSN" : "0195668X", "PMID" : "23095984", "abstract" : "AIMS: Using a large international database from multiple cohort studies, the aim is to create a generalizable easily used risk score for mortality in patients with heart failure (HF).\\n\\nMETHODS AND RESULTS: The MAGGIC meta-analysis includes individual data on 39 372 patients with HF, both reduced and preserved left-ventricular ejection fraction (EF), from 30 cohort studies, six of which were clinical trials. 40.2% of patients died during a median follow-up of 2.5 years. Using multivariable piecewise Poisson regression methods with stepwise variable selection, a final model included 13 highly significant independent predictors of mortality in the following order of predictive strength: age, lower EF, NYHA class, serum creatinine, diabetes, not prescribed beta-blocker, lower systolic BP, lower body mass, time since diagnosis, current smoker, chronic obstructive pulmonary disease, male gender, and not prescribed ACE-inhibitor or angiotensin-receptor blockers. In preserved EF, age was more predictive and systolic BP was less predictive of mortality than in reduced EF. Conversion into an easy-to-use integer risk score identified a very marked gradient in risk, with 3-year mortality rates of 10 and 70% in the bottom quintile and top decile of risk, respectively.\\n\\nCONCLUSION: In patients with HF of both reduced and preserved EF, the influences of readily available predictors of mortality can be quantified in an integer score accessible by an easy-to-use website . The score has the potential for widespread implementation in a clinical setting.", "author" : [ { "dropping-particle" : "", "family" : "Pocock", "given" : "Stuart J.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ariti", "given" : "Cono A.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "V", "family" : "McMurray", "given" : "John J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Maggioni", "given" : "Aldo", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "K\u00f8ber", "given" : "Lars", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Squire", "given" : "Iain B.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Swedberg", "given" : "Karl", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dobson", "given" : "Joanna", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Poppe", "given" : "Katrina K.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Whalley", "given" : "Gillian A.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Doughty", "given" : "Rob N.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "European Heart Journal", "id" : "ITEM-1", "issue" : "19", "issued" : { "date-parts" : [ [ "2013" ] ] }, "page" : "1404-1413", "title" : "Predicting survival in heart failure: A risk score based on 39 372 patients from 30 studies", "type" : "article-journal", "volume" : "34" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "²²", "plainTextFormattedCitation" : "22", "previouslyFormattedCitation" : "²²" }, "properties" : { }, "schema" : "" }22 performance status assessment, needs assessment and PROMs are detailed in Table 4. The strongest predictor of developing a need for SPC was a low KCCQ score. The optimal KCCQ cut-off for this purpose was a score of <29, giving a sensitivity and specificity of 80% and 71%, respectively, and an area under the receiver operating characteristic curve of 0.78. As the KCCQ was the PROM which was most commonly severely impaired in our cohort (i.e. identifying a need for PC by our definition), a sensitivity analysis was performed by omitting KCCQ from the definition of PC needs (i.e. only using a persistently severe impairment of the other PROMs/a severe impairment followed by death before repeat assessment of the PROM). This resulted in 49 (18%) of patients meeting our definition of a need for PC. In this sensitivity analysis using the full multivariable model, KCCQ <29 remained the strongest and only significant predictor of SPC (supplementary appendix table S3) . Use of SPC servicesOf the 272 patients studied, 32 (12%) accessed SPC services, either as an inpatient or outpatient during follow-up. Of the 74 patients who met our definition of SPC needs, 18 (24%) received SPC, compared to 14 (7%) of the 198 patients who did not meet the definition of SPC needs (p< 0.001). Five patients (7%) with a need for SPC received hospice care compared with one (0.5%) of those without a need for SPC. DISCUSSIONAlthough it can be argued that all patients with HF should receive PC, in that improvement in QoL is a treatment goal for everyone, not all patients require SPC input. Physicians find it difficult to identify which patients should be referred for SPC. We have proposed and tested a definition which helps identify the need for SPC before discharge in patients hospitalised with worsening HF. Approximately one quarter of a cohort of 272 nearly consecutively recruited patients admitted to hospital with HF met this definition. Patients fulfilling our definition had a greatly reduced number of DAOH (one third fewer days than those without a need for SPC) and an even more striking reduction in disease-related QoL-adjusted DAOH (one quarter of those without a need for SPC). In investigating the need for SPC, we used a broader range of quantifiable PROMs than in any previous study and investigated a “real world” group of patients. We found that from among the PROMs used, the KCCQ performed best and a score <29 (out of 100) during admission was the strongest predictor of PC needs during follow-up. By recruiting a near-consecutive cohort, we believe that our results can be generalised to patients seen every day in clinical practice. Overall, the patients in our study were elderly, had multiple co-morbidities, and most had a reduced ejection fraction; in keeping with epidemiological studies and registries of patients hospitalised with HF.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1093/eurjhf/hfs010", "ISBN" : "1879-0844 (Electronic)\\r1388-9842 (Linking)", "ISSN" : "13889842", "PMID" : "22334727", "abstract" : "Aims Observational studies in selected populations have suggested that microvolt T-wave alternans (MTWA) testing may identify patients with heart failure (HF) at risk of sudden cardiac death. The aims of this study were to investigate the utility of MTWA testing in an unselected population of patients with HF and to evaluate the clinical characteristics associated with the MTWA results.Methods and results A total of 1003 patients hospitalized with decompensated HF were enrolled. MTWA testing was planned 1 month post-discharge; 648 patients returned for MTWA testing. Mean age was 70.8 \u00b1 10.6 years and 58% were male. Of these patients who returned, 318 (49%) were ineligible for MTWA testing due to atrial fibrillation (AF), pacemaker dependency, or physical inability to undertake the test. Of the MTWA tests, 100 (30%) were positive, 78 (24%) were negative, and 152 (46%) were indeterminate; 112/152 indeterminate tests (74%) occurred because of failure to achieve target heart rate (HR) due to chronotropic incompetence or physical limitations. There were differences in patient characteristics according to MTWA result. Independent predictors of a negative result included younger age and higher left ventricular ejection fraction (LVEF). Independent predictors of a positive result included higher HR during MTWA testing and lower LVEF. Independent predictors of an indeterminate result included older age and history of previous/paroxysmal AF.Conclusions Only half of patients with HF are eligible for MTWA testing and the most common result is an indeterminate test. Patients with positive and indeterminate tests have different clinical characteristics. MTWA treadmill testing is not widely applicable in typical HF patients and is unlikely to refine risk stratification for sudden death on a population level.", "author" : [ { "dropping-particle" : "", "family" : "Jackson", "given" : "Colette E.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Myles", "given" : "Rachel C.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Tsorlalis", "given" : "Ioannis K.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dalzell", "given" : "Jonathan R.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Spooner", "given" : "Richard J.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Rodgers", "given" : "John R.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bezlyak", "given" : "Vladimir", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Greenlaw", "given" : "Nicola", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ford", "given" : "Ian", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Cobbe", "given" : "Stuart M.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Petrie", "given" : "Mark C.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "V", "family" : "McMurray", "given" : "John J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "European Journal of Heart Failure", "id" : "ITEM-1", "issue" : "4", "issued" : { "date-parts" : [ [ "2012" ] ] }, "page" : "377-386", "title" : "Profile of microvolt T-wave alternans testing in 1003 patients hospitalized with heart failure", "type" : "article-journal", "volume" : "14" }, "uris" : [ "" ] }, { "id" : "ITEM-2", "itemData" : { "DOI" : "10.1161/CIRCULATIONAHA.111.080770", "ISSN" : "1524-4539", "PMID" : "22615345", "abstract" : "BACKGROUND: Heart failure with preserved ejection fraction (EF) is a common syndrome, but trends in treatments and outcomes are lacking.\n\nMETHODS AND RESULTS: We analyzed data from 275 hospitals in Get With the Guidelines-Heart Failure from January 2005 to October 2010. Patients were stratified by EF as reduced EF (EF <40% [HF-reduced EF]), borderline EF (40%\u2264EF<50% [HF-borderline EF]), or preserved (EF \u226550% [HF-preserved EF]). Using multivariable models, we examined trends in therapies and outcomes. Among 110 621 patients, 50% (55 083) had HF-reduced EF, 14% (15 184) had HF-borderline EF, and 36% (40 354) had HF-preserved EF. From 2005 to 2010, the proportion of hospitalizations for HF-preserved EF increased from 33% to 39% (P<0.0001). In multivariable analyses, use of angiotensin-converting enzyme inhibitors/angiotensin receptor blockers at discharge decreased in all EF groups, and \u03b2-blocker use increased. Patients with HF-preserved EF less frequently achieved blood pressure control (adjusted odds ratio, 0.44 versus HF-reduced EF; P<0.001) and were more likely discharged to skilled nursing (adjusted odds ratio, 1.16 versus HF-reduced EF; P<0.001). In-hospital mortality for HF-preserved EF decreased from 3.32% in 2005 to 2.35% in 2010 (adjusted odds ratio, 0.89 per year; P=0.01) but was stable for patients with HF-reduced EF (3.03%-2.83%; adjusted odds ratio, 0.93 per year; P=0.10).\n\nCONCLUSIONS: Hospitalization for HF-preserved EF is increasing relative to HF-reduced EF. Although in-hospital mortality for patients with HF-preserved EF declined over the study period, an important opportunity remains for identifying evidence-based therapies in patients with HF-preserved EF.", "author" : [ { "dropping-particle" : "", "family" : "Steinberg", "given" : "Benjamin a", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Zhao", "given" : "Xin", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Heidenreich", "given" : "Paul a", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Peterson", "given" : "Eric D", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bhatt", "given" : "Deepak L", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Cannon", "given" : "Christopher P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Hernandez", "given" : "Adrian F", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Fonarow", "given" : "Gregg C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Circulation", "id" : "ITEM-2", "issue" : "1", "issued" : { "date-parts" : [ [ "2012", "7", "3" ] ] }, "page" : "65-75", "title" : "Trends in patients hospitalized with heart failure and preserved left ventricular ejection fraction: prevalence, therapies, and outcomes.", "type" : "article-journal", "volume" : "126" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "^23,24", "plainTextFormattedCitation" : "23,24", "previouslyFormattedCitation" : "^23,24" }, "properties" : { }, "schema" : "" }23,24 Our definition of need for SPC identified a subset among these patients with characteristics that intuitively make sense: they had worse prior NYHA class, were more likely to have been recently hospitalized with HF and had other, independent, measures of poor performance (AKPS score) and needs (using the NAT-PD-HF), as well as corroborating evidence of greater care-giver burden (ZBI). Importantly, these patients were not clearly identified by traditional physiological markers of advanced HF such as low eGFR or conventional prognostic markers such as ejection fraction or BNP.Patients with a need for SPC received similar treatment for HF, compared to those without. This is an important additional finding as most prior studies looking at potential SPC need in patients with HF did not describe use of conventional HF therapy. SPC, as an additional intervention, should mainly be considered in patients who continue to have a high symptom burden and poor QoL despite use of evidence-based HF therapy.21 Prescription of disease modifying pharmacotherapy was high in our study, including in patients with a need for SPC, although very few patients had a device (e.g. ICDs, CRT, ventricular assist devices) implanted. We believe that our definition is intuitive and identifies patients who have either poor QoL combined with greatly reduced life expectancy or sustained and substantial impairment of QoL. It accounts for the fluctuating nature of HF by using longitudinal assessments. By using PROMs, the patient’s perspective of the influence HF has on their lives is described, rather than taking the physician’s perspective. We have shown that the KCCQ summary score, assessed during a hospital admission, can identify patients who had or go on to develop a need for SPC. This measure was a more powerful predictor of SPC need than variables usually considered predictors of prognosis or variables reflecting performance status. Our analysis shows that a KCCQ summary score of <29 is the best tool, among a variety of PROMs, to identify those with a need for SPC and this simple and reproducible PROM could easily be adopted into clinical practice. One other study has also suggested that the KCCQ might be useful for this purpose. In a retrospective examination of the Efficacy of Vasopressin Antagonism in Heart Failure Outcome Study with Tolvaptan (EVEREST) clinical trial, need for SPC was arbitrarily defined as a KCCQ score persistently <45 or death within 6 months. In a multivariable analysis, a KCCQ score of <25 was the strongest predictor of need for SPC defined in this way.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1161/CIRCOUTCOMES.110.958009", "ISBN" : "3037242094", "ISSN" : "1941-7705", "PMID" : "21693723", "abstract" : "Communicating prognosis to enable shared decision-making is strongly endorsed by heart failure (HF) guidelines. Patients are concerned with both their quantity and quality of life (QoL). To facilitate the recognition of patients at high risk for unfavorable future QoL or death, we created a simple prognostic tool to estimate this combined outcome.", "author" : [ { "dropping-particle" : "", "family" : "Allen", "given" : "Larry A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gheorghiade", "given" : "Mihai", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Reid", "given" : "Kimberly J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dunlay", "given" : "Shannon M", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Chan", "given" : "Paul S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Hauptman", "given" : "Paul J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Zannad", "given" : "Faiez", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Konstam", "given" : "Marvin A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Spertus", "given" : "John A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Circulation. Cardiovascular quality and outcomes", "id" : "ITEM-1", "issue" : "4", "issued" : { "date-parts" : [ [ "2011", "7" ] ] }, "page" : "389-98", "title" : "Identifying patients hospitalized with heart failure at risk for unfavorable future quality of life.", "type" : "article-journal", "volume" : "4" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "²⁵", "plainTextFormattedCitation" : "25", "previouslyFormattedCitation" : "²⁵" }, "properties" : { }, "schema" : "" }25 Although our study and the EVEREST analysis are complementary, their design was quite different in that we enrolled a near-consecutive and unselected cohort of patients with HF, tested a variety of PROMs, conducted more frequent patient assessments and tested our definition of need for SPC using a different outcome. Nevertheless, the KCCQ emerged as the best PROM for predicting those with a need for SPC. However, using a PROM for this purpose is not possible for all patients admitted to hospital with HF, as not every patient can complete a PROM, such as those with cognitive impairment, or those with visual impairment or reading difficulties. The ability to identify patients with SPC needs is potentially valuable from several perspectives. These individuals could be the focus of efforts to improve QoL, attempts to prevent readmissions or interventions to improve quality of death, such as those suggested in the ESC HFA PC position paper.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1093/eurjhf/hfp041", "ISSN" : "1388-9842", "PMID" : "19386813", "abstract" : "Heart failure is a serious condition and equivalent to malignant disease in terms of symptom burden and mortality. At this moment only a comparatively small number of heart failure patients receive specialist palliative care. Heart failure patients may have generic palliative care needs, such as refractory multifaceted symptoms, communication and decision making issues and the requirement for family support. The Advanced Heart Failure Study Group of the Heart Failure Association of the European Society of Cardiology organized a workshop to address the issue of palliative care in heart failure to increase awareness of the need for palliative care. Additional objectives included improving the accessibility and quality of palliative care for heart failure patients and promoting the development of heart failure-orientated palliative care services across Europe. This document represents a synthesis of the presentations and discussion during the workshop and describes recommendations in the area of delivery of quality care to patients and families, education, treatment coordination, research and policy.", "author" : [ { "dropping-particle" : "", "family" : "Jaarsma", "given" : "Tiny", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Beattie", "given" : "James M", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ryder", "given" : "Mary", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Rutten", "given" : "Frans H", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McDonagh", "given" : "Theresa", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Mohacsi", "given" : "Paul", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Murray", "given" : "Scott a", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Grodzicki", "given" : "Thomas", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bergh", "given" : "Ingrid", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Metra", "given" : "Marco", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ekman", "given" : "Inger", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Angermann", "given" : "Christiane", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Leventhal", "given" : "Marcia", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Pitsis", "given" : "Antonis", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Anker", "given" : "Stefan D", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gavazzi", "given" : "Antonello", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ponikowski", "given" : "Piotr", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dickstein", "given" : "Kenneth", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Delacretaz", "given" : "Etienne", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Blue", "given" : "Lynda", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Strasser", "given" : "Florian", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McMurray", "given" : "John", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "European journal of heart failure", "id" : "ITEM-1", "issue" : "5", "issued" : { "date-parts" : [ [ "2009", "5" ] ] }, "page" : "433-43", "title" : "Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology.", "type" : "article-journal", "volume" : "11" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "⁸", "plainTextFormattedCitation" : "8", "previouslyFormattedCitation" : "⁸" }, "properties" : { }, "schema" : "" }8 A KCCQ score of <29 could also be used as the main inclusion criterion for clinical trials aimed at testing SPC interventions. Despite over one quarter of patients meeting the definition a need for SPC, very few patients accessed either SPC services or hospice care; indeed, 74% of those with a SPC need did not access these services. Perhaps because of uncertain criteria for who to refer, few patients with HF receive SPC. Of all patients accessing hospice care or SPC services in the England and Wales in 2013-14, 88% had a diagnosis of cancer.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "author" : [ { "dropping-particle" : "", "family" : "The National Council for Palliaitve Care", "given" : "", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "id" : "ITEM-1", "issued" : { "date-parts" : [ [ "2014" ] ] }, "title" : "National Survey of Patient Activity Data for Specialist Palliative Care Services: MDS Full report for the year 2013-2014", "type" : "report" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "²⁶", "plainTextFormattedCitation" : "26", "previouslyFormattedCitation" : "²⁶" }, "properties" : { }, "schema" : "" }26 In a recent audit of 54 654 patients admitted to hospital with HF in England and Wales between 2013-2014, only 4% were referred to SPC during admission.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "URL" : "", "accessed" : { "date-parts" : [ [ "2016", "1", "30" ] ] }, "author" : [ { "dropping-particle" : "", "family" : "Mitchell", "given" : "Polly", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Marle", "given" : "Damian", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Donkor", "given" : "Akosua", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Shote", "given" : "Aminat", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "McDonagh", "given" : "Theresa", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Hardman", "given" : "Suzanna", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dargie", "given" : "Henry", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Cleland", "given" : "John;", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "id" : "ITEM-1", "issued" : { "date-parts" : [ [ "2014" ] ] }, "title" : "National Heart Failure Audit April 2013-March 2014", "type" : "webpage" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "²⁷", "plainTextFormattedCitation" : "27", "previouslyFormattedCitation" : "²⁷" }, "properties" : { }, "schema" : "" }27 Two recent studies in the United States retrospectively analysed large HF databases to identify patients thought likely to have SPC needs.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1001/jamacardio.2016.1687", "ISSN" : "2380-6583", "author" : [ { "dropping-particle" : "", "family" : "Mandawat", "given" : "Anant", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", 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Study LimitationsThis study was conducted in a single secondary care centre which potentially reduces the generalisability of the results. However, this issue is mitigated by the benefit gained from reduction in selection bias by recruiting a prospective, near-consecutive, and unselected cohort. Another potential weakness of the study was missed study assessments. These were unavoidable in a longitudinal study assessing an elderly and co-morbid population. However, overall there were high study retention rates, due to the high proportion of study assessments taking place in patients’ homes. No patients were lost to follow-up for vital status. The overall proportion of missing PROM data, for reasons other than death, was low, although we have made an assumption that patients had the same PROM score at subsequent missed assessments. This represents a potential weakness given the fluctuant course of HF. When calculating QoL-, mood-, and symptom-adjusted DAOH, we have made an assumption that the patient had the same KCCQ, SF-12, HADS, and ESAS score for each day until a subsequent assessment was performed, i.e, last observation carried forward. Although these PROMs were not designed or validated to provide an assessment over four months, we chose to use this frequency of assessment to minimize patient study fatigue and to encourage study retention.To our knowledge there are no validated “cut points” for “mild”, “moderate” and “severe” grades of the ESAS summary score. Arbitrary points were therefore used, but this makes an assumption that each symptom has the same weight in its effect on QoL. However, although this may not be the case, the findings are consistent with the other measures of need. 14 patients (7%) who did not meet our definition of SPC need did access SPC services. This could potentially reflect a weakness in the sensitivity of our definition of SPC need. However, the individual reasons for referral to SPC were not available, and given the co-morbid and elderly study patient population, it is possible that some of these (and those with HF SPC needs) accessed SPC services for another pathology such as cancer for which the referral systems are much more robust.CONCLUSIONWe have proposed a definition which identifies hospitalized HF patients who subsequently need SPC; 27% of patients met this definition. Patients who met this definition enjoyed only about a quarter of the QoL-adjusted DAOH of those who did not. A KCCQ score of <29 on admission identified patients who go on to have SPC needs after discharge. Declaration of interestNone declared. AcknowledgementsThis study was funded by a project grant from the British Heart Foundation; Grant number PG/13/17/30050. List of tablesTable 1- PROM severity cut-offTable 2- Baseline PROM results Table 3- Baseline characteristicsTable 4- Multivariate logistic regression of predictors of PC needsList of figuresFigure 1- Definition of SPC needs. Figure 2- ESAS symptom distribution at baseline Figure 3- Symptom distribution Figure 4- QOL- adjusted, symptom-adjusted, and mood-adjusted DAOH analysisReferencesADDIN Mendeley Bibliography CSL_BIBLIOGRAPHY 1. Barnes S, Gott M, Payne S, Parker C, Seamark D, Gariballa S, Small N. Prevalence of symptoms in a community-based sample of heart failure patients. J Pain Symptom Manage 2006;32:208–216. 2. Jhund PS, Macintyre K, Simpson CR, Lewsey JD, Stewart S, Redpath A, Chalmers JWT, Capewell S, McMurray JJ V. Long-term trends in first hospitalization for heart failure and subsequent survival between 1986 and 2003: a population study of 5.1 million people. Circulation 2009;119:515–523. 3. The World Health Organisation. Definition of Palliative Care. (30 January 2017)4. 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McMurray JJ V, Adamopoulos S, Anker SD, Auricchio A, B?hm M, Dickstein K, Falk V, Filippatos G, Fonseca C, Gomez-Sanchez MA, Jaarsma T, K?ber L, Lip GYH, Maggioni A Pietro, Parkhomenko A, Pieske BM, Popescu B a, R?nnevik PK, Rutten FH, Schwitter J, Seferovic P, Stepinska J, Trindade PT, Voors A a, Zannad F, Zeiher A. ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure 2012: The Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure 2012 of the European Society of Cardiology. Developed in collaboration with the Heart. Eur Heart J 2012;33:1787–1847. 12. Abernethy AP, Shelby-James T, Fazekas BS, Woods D, Currow DC. The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]. BMC Palliat Care 2005;4:7. 13. Waller A, Girgis A, Davidson PM, Newton PJ, Lecathelinais C, MacDonald PS, Hayward CS, Currow DC. Facilitating needs-based support and palliative care for people with chronic heart failure: Preliminary evidence for the acceptability, inter-rater reliability, and validity of a needs assessment tool. J Pain Symptom Manage 2013;45:912–925. 14. Zarit, S.H., Reever, K.E., Bach-Peterson J. Relatives of the impaired elderly: Correlates of feeling of burden. Gerontologist 1980;20:649–655. 15. Green CP, Porter CB, Bresnahan DR, Spertus JA. Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure. J Am Coll Cardiol 2000;35:1245–1255. 16. Jenkinson C, Layte R. Development and testing of the UK SF-12 (short form health survey). J Health Serv Res Policy 1997;2:14–18. 17. Chang VT, Hwang SS, Feuerman M. Validation of the Edmonton Symptom Assessment Scale. Cancer 2000;88:2164–2171. 18. Zigmond a S, Snaith RP. The hospital anxiety and depression scale (HADS). Acta Psychiatr Scand 1983;67:361–370. 19. MacIntyre K, Capewell S, Stewart S, Chalmers JW, Boyd J, Finlayson A, Redpath A, Pell JP, McMurray JJ. Evidence of improving prognosis in heart failure: trends in case fatality in 66 547 patients hospitalized between 1986 and 1995. Circulation 2000;102:1126–1131. 20. Rahimi K, Bennett D, Conrad N, Williams TM, Basu J, Dwight J, Woodward M, Patel A, McMurray J, MacMahon S. Risk prediction in patients with heart failure: A systematic review and analysis. JACC Hear Fail 2014;2:440–446. 21. Youden WJ. Index for rating diagnostic tests. Cancer 1950;3:32–35. 22. Pocock SJ, Ariti CA, McMurray JJ V, Maggioni A, K?ber L, Squire IB, Swedberg K, Dobson J, Poppe KK, Whalley GA, Doughty RN. Predicting survival in heart failure: A risk score based on 39 372 patients from 30 studies. Eur Heart J 2013;34:1404–1413. 23. Jackson CE, Myles RC, Tsorlalis IK, Dalzell JR, Spooner RJ, Rodgers JR, Bezlyak V, Greenlaw N, Ford I, Cobbe SM, Petrie MC, McMurray JJ V. Profile of microvolt T-wave alternans testing in 1003 patients hospitalized with heart failure. Eur J Heart Fail 2012;14:377–386. 24. Steinberg B a, Zhao X, Heidenreich P a, Peterson ED, Bhatt DL, Cannon CP, Hernandez AF, Fonarow GC. Trends in patients hospitalized with heart failure and preserved left ventricular ejection fraction: prevalence, therapies, and outcomes. Circulation 2012;126:65–75. 25. Allen LA, Gheorghiade M, Reid KJ, Dunlay SM, Chan PS, Hauptman PJ, Zannad F, Konstam MA, Spertus JA. Identifying patients hospitalized with heart failure at risk for unfavorable future quality of life. Circ Cardiovasc Qual Outcomes 2011;4:389–398. 26. The National Council for Palliaitve Care. National Survey of Patient Activity Data for Specialist Palliative Care Services: MDS Full report for the year 2013-2014. 2014. 27. Mitchell P, Marle D, Donkor A, Shote A, McDonagh T, Hardman S, Dargie H, Cleland J. National Heart Failure Audit April 2013-March 2014. 2014. (30 January 2016)28. Mandawat A, Heidenreich PA, Mandawat A, Bhatt DL, AC S, ED A, SA H, BN D, RK S, D G. Trends in Palliative Care Use in Veterans With Severe Heart Failure Using a Large National Cohort. JAMA Cardiol 2016;1:617. 29. Robinson MR, Al-Kindi SG, Oliveira GH. Trends in Palliative Care Use in Elderly Men and Women With Severe Heart Failure in the United States. JAMA Cardiol 2017;2:344. 30. Crawford JR, Henry JD, Crombie C, Taylor EP. Normative data for the HADS from a large non-clinical sample. Br J Clin Psychol 2001;40:429–434. 31. Evangelista LS, Liao S, Motie M, Michelis N De, Ballard-Hernandez J, Lombardo D. Does the type and frequency of palliative care services received by patients with advanced heart failure impact symptom burden? J Palliat Med 2014;17:75–79. TablesTable 1- PROM severity cut-off definitionPROMSeverityCut-offSeverity cut off derivationHADS DepressionNone/mild≤ 10Severity cut-off scores suggested by authors, corroborated by normative data.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1348/014466501163904", "ISBN" : "0144-6657", "ISSN" : "0144-6657", "PMID" : "11760618", "abstract" : "OBJECTIVES: To provide normative data for the Hospital Anxiety Depression Scale (HADS). DESIGN: Repeated measures and correlational. METHODS: The HADS was administered to a non-clinical sample, broadly representative of the general adult UK population (N = 1792) in terms of the distributions of age, gender and occupational status. Correlational analysis was used to determine the influence of demographic variables on HADS scores. RESULTS: Demographic variables had only very modest influences on HADS scores. The reliability of the HADS is acceptable; the Anxiety and Depression scales are moderately correlated (.53). Tables to convert raw scores to percentiles are presented for females and males. CONCLUSIONS: The present normative data allow clinicians to assess the rarity of a given HADS score, and thus provide a useful supplement to existing cut-off scores.", "author" : [ { "dropping-particle" : "", "family" : "Crawford", "given" : "J R", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Henry", "given" : "J D", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Crombie", "given" : "C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Taylor", "given" : "E P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "The British journal of clinical psychology / the British Psychological Society", "id" : "ITEM-1", "issue" : "Pt 4", "issued" : { "date-parts" : [ [ "2001" ] ] }, "page" : "429-434", "title" : "Normative data for the HADS from a large non-clinical sample.", "type" : "article-journal", "volume" : "40" }, "uris" : [ "" ] }, { "id" : "ITEM-2", "itemData" : { "DOI" : "10.1016/S0016-5085(01)83173-5", "ISSN" : "0001690X", "PMID" : "6880820", "abstract" : "(1983).. , 67, 361-370. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67: 361370.", "author" : [ { "dropping-particle" : "", "family" : "Zigmond", "given" : "a S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Snaith", "given" : "R P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Acta Psychiatrica Scandinavica", "id" : "ITEM-2", "issue" : "361-370", "issued" : { "date-parts" : [ [ "1983" ] ] }, "page" : "361-370", "title" : "The hospital anxiety and depression scale (HADS).", "type" : "article-journal", "volume" : "67" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "^18,30", "plainTextFormattedCitation" : "18,30", "previouslyFormattedCitation" : "^18,30" }, "properties" : { }, "schema" : "" }18,30Moderate11-15Severe≥ 16HADS AnxietyNone/mild≤ 10Severity cut-off scores suggested by authors, corroborated by normative data.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1016/S0016-5085(01)83173-5", "ISSN" : "0001690X", "PMID" : "6880820", "abstract" : "(1983).. , 67, 361-370. 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METHODS: The HADS was administered to a non-clinical sample, broadly representative of the general adult UK population (N = 1792) in terms of the distributions of age, gender and occupational status. Correlational analysis was used to determine the influence of demographic variables on HADS scores. RESULTS: Demographic variables had only very modest influences on HADS scores. The reliability of the HADS is acceptable; the Anxiety and Depression scales are moderately correlated (.53). Tables to convert raw scores to percentiles are presented for females and males. CONCLUSIONS: The present normative data allow clinicians to assess the rarity of a given HADS score, and thus provide a useful supplement to existing cut-off scores.", "author" : [ { "dropping-particle" : "", "family" : "Crawford", "given" : "J R", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Henry", "given" : "J D", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Crombie", "given" : "C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Taylor", "given" : "E P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "The British journal of clinical psychology / the British Psychological Society", "id" : "ITEM-2", "issue" : "Pt 4", "issued" : { "date-parts" : [ [ "2001" ] ] }, "page" : "429-434", "title" : "Normative data for the HADS from a large non-clinical sample.", "type" : "article-journal", "volume" : "40" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "^18,30", "plainTextFormattedCitation" : "18,30", "previouslyFormattedCitation" : "^18,30" }, "properties" : { }, "schema" : "" }18,30Moderate11-15Severe≥ 16KCCQ summary scoreNone/mild> 50Correlation of cut-offs with NYHA class, mortality, and PC needs.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1161/CIRCOUTCOMES.110.958009", "ISBN" : "3037242094", "ISSN" : "1941-7705", "PMID" : "21693723", "abstract" : "Communicating prognosis to enable shared decision-making is strongly endorsed by heart failure (HF) guidelines. Patients are concerned with both their quantity and quality of life (QoL). To facilitate the recognition of patients at high risk for unfavorable future QoL or death, we created a simple prognostic tool to estimate this combined outcome.", "author" : [ { "dropping-particle" : "", "family" : "Allen", "given" : "Larry A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Gheorghiade", "given" : "Mihai", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Reid", "given" : "Kimberly J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Dunlay", "given" : "Shannon M", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Chan", "given" : "Paul S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Hauptman", "given" : "Paul J", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Zannad", "given" : "Faiez", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Konstam", "given" : "Marvin A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Spertus", "given" : "John A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Circulation. Cardiovascular quality and outcomes", "id" : "ITEM-1", "issue" : "4", "issued" : { "date-parts" : [ [ "2011", "7" ] ] }, "page" : "389-98", "title" : "Identifying patients hospitalized with heart failure at risk for unfavorable future quality of life.", "type" : "article-journal", "volume" : "4" }, "uris" : [ "" ] }, { "id" : "ITEM-2", "itemData" : { "ISSN" : "0735-1097", "PMID" : "10758967", "abstract" : "OBJECTIVES To create a valid, sensitive, disease-specific health status measure for patients with congestive heart failure (CHF). BACKGROUND Quantifying health status is becoming increasingly important for CHF. The Kansas City Cardiomyopathy Questionnaire (KCCQ) is a new, self-administered, 23-item questionnaire that quantifies physical limitations, symptoms, self-efficacy, social interference and quality of life. METHODS To establish the performance characteristics of the KCCQ, two distinct patient cohorts were recruited: 70 stable and 59 decompensated CHF patients with ejection fractions of <40. Upon entry into the study, patients were administered the KCCQ, the Minnesota Living with Heart Failure Questionnaire and the Short Form-36 (SF-36). Questionnaires were repeated three months later. RESULTS Convergent validity of each KCCQ domain was documented by comparison with available criterion standards (r = 0.46 to 0.74; p < 0.001 for all). Among those with stable CHF who remained stable by predefined criteria (n = 39), minimal changes in KCCQ domains were detected over three months of observation (mean change = 0.8 to 4.0 points, p = NS for all). In contrast, large changes in score were observed among patients whose decompensated CHF improved three months later (n = 39; mean change = 15.4 to 40.4 points, p < 0.01 for all). The sensitivity of the KCCQwas substantially greater than that of the Minnesota Living with Heart Failure and the SF-36 questionnaires. CONCLUSIONS The KCCQis a valid, reliable and responsive health status measure for patients with CHF and may serve as a clinically meaningful outcome in cardiovascular research, patient management and quality assessment.", "author" : [ { "dropping-particle" : "", "family" : "Green", "given" : "C P", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Porter", "given" : "Charles B", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Bresnahan", "given" : "Dennis R", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Spertus", "given" : "John A", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of the American College of Cardiology", "id" : "ITEM-2", "issue" : "5", "issued" : { "date-parts" : [ [ "2000", "4" ] ] }, "page" : "1245-55", "title" : "Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure.", "type" : "article-journal", "volume" : "35" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "^15,25", "plainTextFormattedCitation" : "15,25", "previouslyFormattedCitation" : "^15,25" }, "properties" : { }, "schema" : "" }15,25Moderate25-50Severe< 25ESAS summary scoreNone/mild0-33Individual symptom score severity based on HF cohort.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1089/jpm.2013.0231", "ISBN" : "1096-6218", "ISSN" : "1557-7740", "PMID" : "24304292", "author" : [ { "dropping-particle" : "", "family" : "Evangelista", "given" : "Lorraine S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Liao", "given" : "Solomon", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Motie", "given" : "Marjan", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Michelis", "given" : "Nathalie", "non-dropping-particle" : "De", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Ballard-Hernandez", "given" : "Jennifer", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Lombardo", "given" : "Dawn", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of palliative medicine", "id" : "ITEM-1", "issue" : "1", "issued" : { "date-parts" : [ [ "2014" ] ] }, "page" : "75-9", "title" : "Does the type and frequency of palliative care services received by patients with advanced heart failure impact symptom burden?", "type" : "article-journal", "volume" : "17" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "³¹", "plainTextFormattedCitation" : "31", "previouslyFormattedCitation" : "³¹" }, "properties" : { }, "schema" : "" }31 No summary score severity available. Moderate34-66Severe67-100SF-12 physical summary scoreNone/mild> 40.28Severity scores based on normative data: Moderate = between 2-3 SD from mean; severe = > 3 SD from mean.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "ISBN" : "1355-8196 (Print)\\r1355-8196 (Linking)", "ISSN" : "1355-8196", "PMID" : "10180648", "abstract" : "OBJECTIVES: The 36 item short form health survey (SF-36) has proved to be of use in a variety of settings where a short generic health measure of patient-assessed outcome is required. This measure can provide an eight dimension profile of health status, and two summary scores assessing physical function and mental well-being. The developers of the SF-36 in America have developed algorithms to yield the two summary component scores in a questionnaire containing only one-third of the original 36 items, the SF-12. This paper documents the construction of the UK SF-12 summary measures from a large-scale dataset from the UK in which the SF-36, together with other questions on health and lifestyles, was sent to randomly selected members of the population. Using these data we attempt here to replicate the findings of the SF-36 developers in the UK setting, and then to assess the use of SF-12 summary scores in a variety of clinical conditions. METHODS: Factor analytical methods were used to derive the weights used to construct the physical and mental component scales from the SF-36. Regression methods were used to weight the 12 items recommended by the developers to construct the SF-12 physical and mental component scores. This analysis was undertaken on a large community sample (n = 9332), and then the results of the SF-36 and SF-12 were compared across diverse patient groups (Parkinson's disease, congestive heart failure, sleep apnoea, benign prostatic hypertrophy). RESULTS: Factor analysis of the SF-36 produced a two factor solution. The factor loadings were used to weight the physical component summary score (PCS-36) and mental component summary score (MCS-36). Results gained from the use of these measures were compared with results gained from the PCS-12 and MCS-12, and were found to be highly correlated (PCS: rho = 0.94, p < 0.001; MCS: rho = 0.96, p < 0.001), and produce remarkably similar results, both in the community sample and across a variety of patient groups. CONCLUSIONS: The SF-12 is able to produce the two summary scales originally developed from the SF-36 with considerable accuracy and yet with far less respondent burden. Consequently, the SF-12 may be an instrument of choice where a short generic measure providing summary information on physical and mental health status is required.", "author" : [ { "dropping-particle" : "", "family" : "Jenkinson", "given" : "C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Layte", "given" : "R", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of health services research & policy", "id" : "ITEM-1", "issue" : "1", "issued" : { "date-parts" : [ [ "1997" ] ] }, "page" : "14-18", "title" : "Development and testing of the UK SF-12 (short form health survey).", "type" : "article-journal", "volume" : "2" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹⁶", "plainTextFormattedCitation" : "16", "previouslyFormattedCitation" : "¹⁶" }, "properties" : { }, "schema" : "" }16 Moderate30.56-40.28Severe< 30.56SF-12 mental summary scoreNone/mild> 40.28Severity scores based on normative data: Moderate = between 2-3 SD from mean; severe = > 3 SD from mean.ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "ISBN" : "1355-8196 (Print)\\r1355-8196 (Linking)", "ISSN" : "1355-8196", "PMID" : "10180648", "abstract" : "OBJECTIVES: The 36 item short form health survey (SF-36) has proved to be of use in a variety of settings where a short generic health measure of patient-assessed outcome is required. This measure can provide an eight dimension profile of health status, and two summary scores assessing physical function and mental well-being. The developers of the SF-36 in America have developed algorithms to yield the two summary component scores in a questionnaire containing only one-third of the original 36 items, the SF-12. This paper documents the construction of the UK SF-12 summary measures from a large-scale dataset from the UK in which the SF-36, together with other questions on health and lifestyles, was sent to randomly selected members of the population. Using these data we attempt here to replicate the findings of the SF-36 developers in the UK setting, and then to assess the use of SF-12 summary scores in a variety of clinical conditions. METHODS: Factor analytical methods were used to derive the weights used to construct the physical and mental component scales from the SF-36. Regression methods were used to weight the 12 items recommended by the developers to construct the SF-12 physical and mental component scores. This analysis was undertaken on a large community sample (n = 9332), and then the results of the SF-36 and SF-12 were compared across diverse patient groups (Parkinson's disease, congestive heart failure, sleep apnoea, benign prostatic hypertrophy). RESULTS: Factor analysis of the SF-36 produced a two factor solution. The factor loadings were used to weight the physical component summary score (PCS-36) and mental component summary score (MCS-36). Results gained from the use of these measures were compared with results gained from the PCS-12 and MCS-12, and were found to be highly correlated (PCS: rho = 0.94, p < 0.001; MCS: rho = 0.96, p < 0.001), and produce remarkably similar results, both in the community sample and across a variety of patient groups. CONCLUSIONS: The SF-12 is able to produce the two summary scales originally developed from the SF-36 with considerable accuracy and yet with far less respondent burden. Consequently, the SF-12 may be an instrument of choice where a short generic measure providing summary information on physical and mental health status is required.", "author" : [ { "dropping-particle" : "", "family" : "Jenkinson", "given" : "C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Layte", "given" : "R", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Journal of health services research & policy", "id" : "ITEM-1", "issue" : "1", "issued" : { "date-parts" : [ [ "1997" ] ] }, "page" : "14-18", "title" : "Development and testing of the UK SF-12 (short form health survey).", "type" : "article-journal", "volume" : "2" }, "uris" : [ "" ] } ], "mendeley" : { "formattedCitation" : "¹⁶", "plainTextFormattedCitation" : "16", "previouslyFormattedCitation" : "¹⁶" }, "properties" : { }, "schema" : "" }16 Moderate30.56-40.28Severe< 30.56Overall severity categorySeverely impairedSevere in any PROM categoryEdmonton symptom assessment scale; HADS= hospital anxiety and depression scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; PROM= patient reported outcome measure; SF-12= short form-12; SD= standard deviation.Table 2- Baseline PROM resultsSPC Needsn = 74Not SPC Needsn = 198pQOL assessmentKCCQ Severity, n(%)<0.001None/ mild6 (8) 54 (27) Moderate17 (23)100 (51) Severe51 (69)44 (22)KCCQ Summary Score16 [8-27]39 [27-52]<0.001SF-12 Physical Severity, n(%)<0.001None/ mild22 (31) 101 (57) Moderate34 (48)57 (32) Severe15 (21)20 (11)SF-12 Physical Summary Score27 [21-31]32 [25-38]<0.001SF-12 Mental Severity, n(%)<0.001None/ mild45 (63) 154 (87) Moderate15 (21)22 (12) Severe11 (16)2 (1)SF-12 Mental Summary Score36 [26-44]45 [37-53]<0.001Symptom burden assessmentESAS Severity, n(%)<0.001None/ mild14 (19) 94 (48) Moderate45 (62)90 (46) Severe14 (19)12 (6)ESAS Summary Score53 [36-63]34 [18-49]<0.001Mood AssessmentHADS-anxiety Severity, n(%) <0.001None/ mild38 (54) 158 (82) Moderate22 (31)28 (15) Severe11 (16)6 (3)HADS-Anxiety Summary Score10 [6-13]6 [3-9]<0.001HADS-depression Severity, n(%)<0.001None/ mild44 (61) 174 (89) Moderate24 (33)15 (8) Severe4 (6)6 (3)HADS-depression Summary Score9 [7-12]6 [3-9]<0.001Values are expressed as median [interquartile range] unless otherwise statedESAS= Edmonton Symptom Assessment Scale; HADS= Hospital Anxiety and Depression Scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; SPC= specialist palliative care; QOL= quality of life; SF-12= Short Form-12.Table 3- Baseline characteristics SPC Needsn = 74Not SPC Needsn = 198pAge, years73 [65-81]77 [71-83]0.041Female sex28 (38)100 (51)0.076SBP, mmHg127 [112-152]136 [120-158]0.018BMI, kg/m228 [24-32]26 [24-32]0.245NYHA Class0.031 II20 (27)62 (31) III33 (45)108 (55) IV21 (28)28 (14)Medical HistoryPrevious HF diagnosis38 (51)82 (41)0.170HF diagnosis > 2 years19 (26)58 (29)0.651HF hospitalisation in preceding 6 months10 (14)12 (6)0.077Hypertension52 (70)132 (67)0.663Myocardial infarction41 (55)70 (35)0.004Atrial fibrillation41 (55)103 (52)0.683TIA/CVA11 (15)41 (21)0.385Peripheral arterial disease11 (15)27 (14)1.000Diabetes32 (43)57 (29)0.029COPD23 (31)46 (23)0.211Depression14 (19)23 (12)0.164Cancer7 (10)24 (12)0.670ICD / CRT5 (7)13 (7)1.000Discharge medicationACEi/ARB48 (65)?137 (69)?0.559Beta-blocker48 (65)144 (73)0.232MRA24 (32)67 (34)0.886Digoxin20 (27)56 (28)0.880LaboratoryBNP, pg/ml807 [471-1810]683 [417-1329]0.192Na+, mmol/L138 [134-140]138 [135-140]0.621eGFR, ml/min/1.73m255 [38-80]63 [40-82]0.639Hb, g/L120 [108-133]123 [109-138]0.346EchocardiographyEF <= 50%52 (70)131 (66)0.564EF, %36 [24, 50]40 [27-54]0.191LVIDD/BSA, mm/m230 [26-35]29 [26-33]0.397Physician completed assessmentsAKPS60 [50-80]80 [60-90]<0.001NAT-PD-HF- significant concern28 (38)42 (21)0.008Caregiver Burden AssessmentZBI Severity* <0.001None/ mild9 (33) 48 (73) Mild-Moderate12 (44)13 (20) Moderate-Severe6 (22)5 (8)ZBI Summary Score24 [15-38]12 [6-22]<0.001Values are expressed as n (%) or median [interquartile range].ACEi = angiotensin converting enzyme; ARB= angiotensin receptor blocker; AKPS= Australia Modified Karnofsky Performance Status scale; BMI= body mass index; BSA = body surface area; BNP= B-type natriuretic peptide; COPD= chronic obstructive pulmonary disease; CRT= cardiac resynchronisation therapy; CVA= cerebral vascular accident; EF= ejection fraction; eGFR= estimated glomerular filtration rate; Hb= haemoglobin; HF= heart failure; LVIDD= left ventricular internal diameter diastole; MRA= mineralocorticoid receptor antagonist Na+= sodium; NAT-PD-HF- needs assessment tool- progressive disease- heart failure; NYHA= New York Heart Association; SPC= specialist palliative care; TIA= transient ischaemic attack; ZBI = Zarit Burden Interview. * 93 caregivers completed the ZBI questionnaire at baseline. Table 4- Multivariable logistic regression of predictors of SPC needsVariable OR95% CIpMAGGIC risk score, per 5 unit increase1.03 (0.76, 1.40) 0.861 AKPS score, per 10 unit increase0.98 (0.95, 1.01) 0.161 NAT-PD-HF significant needs1.03 (0.44, 2.42) 0.947 KCCQ summary score, per unit increase0.97 (0.94, 0.99) 0.021 HADS Depression summary score, per unit increase1.03 (0.92, 1.15) 0.610 HADS Anxiety summary score, per unit increase1.03 (0.94, 1.13) 0.526 ESAS summary score, per unit increase1.00 (0.98, 1.02) 0.952 SF-12 Physical summary score, per unit increase0.97 (0.92, 1.03) 0.311 SF-12 Mental summary score, per unit increase0.97 (0.92, 1.02) 0.222 AKPS= Australia-modified Karnofsky Performance Status scale; CI= confidence interval; ESAS= Edmonton symptom assessment scale; HADS= hospital anxiety and depression scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; MAGGIC = Meta-Analysis Global Group in Chronic Heart Failure; NAT-PD-HF= needs assessment tool progressive disease heart failure. OR= odds ratioSF-12= short form-12.FiguresFigure 1: Definition of SPC needs Legend- SPC= Specialist palliative care. Definition of SPC needs: Persistently impairment (≥ 2 consecutive assessments) of any PROM without recovery OR severe impairment of any PROM without recovery preceding death. Patient 1 did not have SPC needs as there was improvement of PROM(s) where there was persistent impairment without improvement in patient 3. Patient 4 has SPC needs as there was severe impairment of PROM(s) preceding death, where patient 2 did not have severe impairment preceding death.Figure 2- ESAS symptom distribution at baselineFigure 3- Median symptom score in patients with and without SPC needs Figure 4- QOL- adjusted, symptom-adjusted, and mood-adjusted DAOH analysisLegend: DAOH= days alive and out of hospital; ESAS= Edmonton Symptom Assessment Scale; HADS= Hospital Anxiety and Depression Scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; SH12= Short Form 12; SPC= specialist palliative care.Supplementary AppendixList of tablesSupplementary Appendix Table S1- Completion of patient reported outcome measuresSupplementary Appendix Table S2- Severity of PROM by study visitSupplementary Appendix Table S3- Multivariable logistic regression of predictors of PC needs sensitivity analysis- KCCQ removed from definition of PC needsSupplementary Appendix Table S4- Multivariable logistic regression of predictors of PC needs best fit model using backwards selectionSupplementary Appendix Table S5- Multivariable logistic regression of predictors of PC needs best fit model using backwards selection- sensitivity analysis- KCCQ removed from definition of PC needsList of figuresSupplementary Appendix Figure S1- Calculation of DAOHSupplementary Appendix Figure S2- Screening and recruitmentTable S1- Completion of patient reported outcome measuresBaseline4 month8 month12 month16 month20 month24 monthStudy visit not possible due to time in study002 (1)24 (957 (21)88 (32)124 (46)Died023 (9)48 (18)64 (24)80 (29)91 (34)97 (36)Possible study assessments 272 (100)249 (92)222 (82)184 (68)135 (93)93 (34)51 (19)Study assessment (% of possible study assessments)Completed at least 1 PROM272 (100)187 (75)159 (72)136 (74)94 (70)61 (66)34 (67)Did not complete any PROMs0 4 (2)4 (3)2 (1)2 (2)2 (3)0Did not attend for reasons other than death058 (23)59 (27)46 (25)39 (29)30 (32)17 (33%)Missing PROM (% of possible assessments)HADS-Anxiety9 (3) 72 (29)68 (31)55 (30)50 (37)33 (36)19 (37)HADS-Depression5 (2) 65 (26)66 (30)55 (30)43 (32)32 (34)17 (33)KCCQ overall0 (0) 62 (25)63 (28)48 (26)41 (30)32 (34)17 (33)ESAS overall3 (1) 65 (26)64 (29)48 (26)41 (30)32 (34)17 (33)SF-12 Physical23 (9) 73 (29)75 (34)56 (30)49 (36)36 (38)19 (37)SF-12 Mental23 (9) 73 (29)75 (34)56 (30)49 (36)36 (38)19 (37)Values expressed as n (%)ESAS= Edmonton symptom assessment scale; HADS= hospital anxiety depression scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; PROM= patient reported outcome measure; SF-12= short form 12.Table S2- PROM severity during follow-upBaseline4 month8 month12 month16 month20 month24 monthCompleted at least 1 PROMn=272n= 187n=159n= 136n=94n= 61n= 34Severe PROM (% of those with PROM information)HADS-Anxiety17 (7)4 (2)4 (3)3 (2)1 (1)1 (2)2 (6)HADS-Depression10 (4)4 (2)7 (5)2 (2)3 (3)5 (8)2 (6)KCCQ overall95 (35)28 (15)27 (17)24 (18)14 (15)14 (23)6 (18)ESAS overall26 (10)13 (7)13 (8)13 (10)7 (8)5 (8)5 (15)SF-12 Physical35 (14)28 (16)30 (20)17 (13)10 (12)10 (18)6 (19)SF-12 Mental13 (5)5 (3)5 (3)5 (4)0 3 (5)1 (3)Overall Severe114 (42)52 (28)55 (35)41 (30)24 (26)22 (36)12 (34)Number of Severe PROMs0158 (58)135 (72)104 (65)95 (70)70 (75)39 (64)22 (66)159 (22)31 (17)36 (23)26 (19)16 (17)13 (21)6 (17238 (14)15 (8)11 (7)10 (7)4 (4)4 (7)4 (11)310 (4)3 (2)5 (3)2 (2)4 (4)3 (5)044 (2)3 (2)2 (1)3 (2)02 (3)2 (6)53 (1)01 (1)0000Values expressed as n (%)ESAS= Edmonton symptom assessment scale; HADS= hospital anxiety depression scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; PROM= patient reported outcome measure; SF-12= short form 12.Table S3- Multivariable logistic regression of predictors of PC needs sensitivity analysis- KCCQ removed from definition of PC needsVariable OR95% CIpMAGGIC risk score, per unit increase1.39 (0.96, 2.01) 0.078AKPS score, per 10 unit increase0.98 (0.94, 1.01) 0.91 NAT-PD-HF significant need1.12(0.44, 2.87) 0.816 KCCQ summary score < 29 3.44 (1.20, 9.88) 0.022 HADS Depression summary score, per unit increase1.00(0.95, 1.14) 0.954 HADS Anxiety summary score, per unit increase1.05 (0.95, 1.17) 0.355 ESAS summary score, per unit increase1.01 (0.98, 1.03) 0.584 SF-12 Physical summary score, per unit increase0.97 (0.92, 1.03) 0.378 SF-12 Mental summary score, per unit increase0.97 (0.92, 1.03) 0.300 AKPS= Australia-modified Karnofsky Performance Status scale; CI= confidence interval; ESAS= Edmonton symptom assessment scale; HADS= hospital anxiety and depression scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; MAGGIC = Meta-Analysis Global Group in Chronic Heart Failure; NAT-PD-HF= needs assessment tool progressive disease heart failure. OR= odds ratio; SF-12= short form-12.Table S4- Multivariable logistic regression of predictors of PC needs best fit model using backwards selectionVariable OR95% CIpMAGGIC risk score, per 5 unit increase*1.01 (0.75, 1.36) 0.946 AKPS score, per 10 unit increase0.98 (0.95, 1.00) 0.053 KCCQ overall summary score < 29 0.96 (0.93, 0.98) < 0.001 SF-12 Mental summary score, per unit increase0.97 (0.94, 1.00) 0.085 AKPS= Australia-modified Karnofsky Performance Status scale; CI= confidence interval; ESAS= Edmonton symptom assessment scale; HADS= hospital anxiety and depression scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; MAGGIC = Meta-Analysis Global Group in Chronic Heart Failure; NAT-PD-HF= needs assessment tool progressive disease heart failure. OR= odds ratio; SF-12= short form-12.*MAGGIC variable was forced to be kept in the model during selection processTable S5- Multivariable logistic regression of predictors of PC needs best fit model using backwards selection- sensitivity analysis- KCCQ removed from definition of PC needsVariable OR95% CIpMAGGIC risk score, per 5 unit increase*1.40 (0.98, 2.00) 0.061 AKPS score, per 10 unit increase0.97 (0.94, 1.00) 0.034 KCCQ summary score < 29 5.43 (2.23, 13.2) < 0.001 SF-12 Mental summary score, per unit increase1.10 (1.01, 1.19) 0.024 AKPS= Australia-modified Karnofsky Performance Status scale; CI= confidence interval; ESAS= Edmonton symptom assessment scale; HADS= hospital anxiety and depression scale; KCCQ= Kansas City Cardiomyopathy Questionnaire; MAGGIC = Meta-Analysis Global Group in Chronic Heart Failure; NAT-PD-HF= needs assessment tool progressive disease heart failure. OR= odds ratio; SF-12= short form-12.*MAGGIC variable was forced to be kept in the model during selection processFigure S1- Calculation of DAOHLegend: KCCQ= Kansas City Cardiomyopathy Questionnaire; QOL= quality of life. A= days alive and out of hospital calculation. B= Quality of life adjusted days alive and out of hospital calculation.Figure S2- Screening and recruitment ................
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