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The use of key service data to improve resources for lymphoedema services.Development and pilot of a minimum data set for lymphoedema services in the UK and IrelandBackgroundThe National Lymphoedema Partnership (NLP) grew out of a BLS initiative bringing together key lymphoedema stakeholders across the UK and Ireland to share understanding of lymphoedema service provision, address issues of common concern and champion improved care and better outcomes for people with lymphoedema.(1) One of the early objectives of the NLP was to develop a minimum data set (MDS), to stimulate the gathering of consistent data about patients accessing lymphoedema services. An MDS should help to describe the picture of who is receiving care. This is important at both a national and local level. The national picture can only be as good as the pieces of the jigsaw in place, therefore the more services willing to collect and ultimately submit data, the clearer the overall picture that could be presented to the Department of Health to indicate the needs of patients with lymphoedema. Out of this we hope that a national strategy will be prioritised.At a local level, a service that is able to collate the data of its individual patients will be in a better position to justify future resourcing of lymphoedema services. Development of the MDS tool.The items of the MDS were agreed through a consensus process within the membership of the NLP and were recognised as matching many of those within the International Lymphoedema Framework’s (ILF) LIMPRINT prevalence tools.(2)Although discussion had included quality of life and other outcome measures, as the data set is intended to be the minimum amount of information that services should collect, it was agreed that for the MDS, these should be omitted and further work on outcome tools will take place at a later stage.The data fields agreed were subdivided into 3 groups:Items relating to the person themselves: GenderAgeLevel of obesity (preferably with a Body Mass Index (BMI) recorded, or subjective assessment.)Level of mobility.Items relating to the underlying cause of the oedema:Whether Primary or Secondary LymphoedemaWhether cancer-related or notPresence of LipoedemaICD-10 code (International Classification of Disease)Items that could act as markers of complexity.Sites / extent of the oedemaDuration of oedema prior to first assessment by the serviceSeverity - International Society of Lymphology (ISL) staging(3)History of cellulitis (including admission to hospital)Presence of wounds.The simplicity of information is paramount at this early stage to facilitate a consistent approach to collecting data. Analysis may vary from one service to another depending on whether electronic or paper-based clinical records are used.Pilot of the use of the Minimum Data SetA newly established one day per week, keyworker ‘spoke’ clinic in the North of England agreed to pilot the MDS over a 3 month period (May to July 2016)A paper-based proforma was devised to capture the required data fields. As the ‘hub’ service had recently been involved in the ILF LIMPRINT project, the experience of using the LIMPRINT core, oedema and wound tools had been valuable in working out how the data could be collected. Although similar data fields are already present in the electronic documentation used within the service, it was felt that as part of the pilot, the feasibility of collecting data manually should be assessed as this may be the approach needed for some services. In the longer term, electronic records should allow reporting of the data set without the need to gather information separately.ResultsSixty nine individual patients (58 female) were seen over the 3 month period. Patients had an age range of 32-86 years (median 69) at first assessment. Within this new clinic there was no facility to measure the height of patients, so calculation of BMI was not possible. However a subjective assessment categorised the 69 patients into: ‘Obese’ (26, 37.7%), ‘Overweight’ (22, 31.9%), ‘Normal weight’ (20, 29.0%) or ‘Underweight’ (1, 1.4%). Mobility was recorded as ‘Independently mobile without an aid’ (42, 60.9%), ‘Independently mobile with the use of an aid’ (19, 27.5%) and ‘Wheelchair user’ (8, 11.6%). No patients were recorded as ‘Mobile with assistance’ or ‘Bedbound’.Causes of oedemaClassification of Lymphoedema was divided into Primary (5, 7.2%), Secondary (63, 91.3%) and Lipoedema (1, 1.4%)Of the patients with secondary lymphoedema, 33 were cancer related (52.4%), 22 were non-cancer related (34.9%) and 8 were not recorded on the proforma.ICD codes were recorded in 62 patients, including 26 as ‘mastectomy lymphoedema syndrome’ (ICD code 197.2), one as ‘hereditary lymphoedema’ (Q82.0), one as ‘filariasis-unspecified’ (B74.9) and the remaining 34 as ‘lymphoedema not elsewhere classified’ (Q189.0).Markers of complexity of the oedema:Severity of lymphoedema (ISL staging) included 1 patient at ISL stage I, 25 at early stage II, 30 at late stage II and 13 at ISL stage III.Duration of symptoms of oedema prior to first assessment: < 6 months1 (1.4%)6 months to 1 year1 (1.4%)1 - 2 years2 (2.9%)2 - 5 years20 (29.0%)5 - 10 years23 (33.3%)> 10 years19 (27.5%)(blank)3 (4.3%)Overall, there were 42 patients with lower limb oedema (of which 38 were bilateral), 26 upper limb (2 bilateral), 8 patients with breast oedema and one with head and neck oedema. The means of documenting sites of oedema has been adapted for future versions of the proforma.The number of patients with a wound was recorded as only 4, with 3 of these being a foot/leg ulcer, the other not being specified.Forty-three (62.3%) reported an episode of cellulitis at some point in the past with 11 (15.9%) an episode within the last 12 months with 2 of these requiring admission to hospital on one occasion each.Feedback from the pilot / DiscussionOverall there was a high level of completion of the data set, with very few data fields left blank (27 out of a total of 1104). This was very positive and reflected the commitment from the practitioner running the clinic. As they had previous experience of using the LIMPRINT tool, they were able to use the MDS with only a brief explanation and guidance. They did report that it added an extra task and a few minutes to complete within each appointment. Some clinic settings may lack the ability to measure height and for some patients it may be impractical. In the absence of a BMI, a subjective assessment can be made, though there is little evidence on the reliability of this. However BMI itself is only a proxy measure for the level of body fat.(4) For simplicity where the MDS is concerned, reporting is likely to be most useful if BMI is categorised according to the World Health Organisation (WHO) BMI classification system. This defines the categories as Underweight (BMI<18.5), Healthy Weight (BMI 18.5-24.9), Overweight (BMI 25-29.9), Obese (BMI 30+). These definitions will be added to the MDS proforma.The ISL staging was straightforward to complete, though it was suggested that the descriptor for each stage could be added to the proforma as a reminder. Stage II was used as a single stage with the key feature being early fibrosis. Stage 0 was also added.The site of swelling was documented by placing a tick against each individual site involved eg right toes, left toes, right foot, left foot etc. An alternative approach has been proposed that should be more straightforward to analyse, separating sites into upper limb/lower limb, unilateral/bilateral, distal/proximal including root of limb +/- truncal, head and neck, breast, genital oedema present. It was felt that this would give adequate detail for MDS purposes, although clinical records would need to record the full detail from the assessment.Classification of the cause of oedema was also adapted. This could be viewed at a number of different levels: Primary or secondary, and whether the latter were related to cancer or its treatment. Cancer-related causes could be expanded to the primary site of cancer. Non-cancer causes could be further analysed in terms of being ‘primary’ or secondary to: venous/dependency, infection, obesity, lipoedema and other. It could be questioned as to whether this level of detail is required, however, this data could potentially have an impact on levels of commissioning for different groups of patients. Currently, ICD-10 coding is the internationally accepted approach for monitoring the incidence and prevalence of diseases and for allocation of resources. Unfortunately it is dependent on clear diagnostic categories and recent developments in the understanding and terminology of chronic oedema has not yet permeated through to ICD. Conclusions and Next StepsFrom the pilot, it appears that it is feasible to collect information at the initial patient assessment that allows the minimum data set to be completed. The pilot service plans to incorporate the MDS questions into the ordinary clinical documentation within the electronic record so that the data can be reported electronically.From discussion at national level, the MDS has been modified and simplified to facilitate the gathering of comparable data with the view to strengthening the argument for improved resourcing of lymphoedema service provision. The National Lymphoedema Partnership and BLS, as one of its constituent members strongly encourage the use of the MDS to achieve this aim. Further work will take place to facilitate its roll out and the MDS tools will be made available on the BLS website in the near future.Andrew Hughes, Consultant in Palliative Medicine, St Oswald’s Hospice and member of the National Lymphoedema Partnership, Andrew Stoddart RGN, Lymphoedema Practitioner, St Oswalds Hospice, Newcastle upon Tyne.Rankin, J. (2016). The National Lymphoedema Partnership. Br J Community Nursing 21 (4 Suppl): S40-1International Lymphoedema Framework. LIMPRINT [online]. [Accessed 19 March 2017]The International Society of Lymphology (2013). The diagnosis and treatment of peripheral lymphoedema: 2013 Consensus document of the International Society of Lymphology. Lymphology 46(1): 1-11National Obesity Observatory (2009). Body Mass Index as a measure of obesity. [online]. [Accessed 16 March 2017]World Health Organisation. Classifications. [online]. [Accessed 19 March 2017] ................
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