Stigma and Irritable Bowel Syndrome - a taboo subject?
Stigma and Irritable Bowel Syndrome - a taboo subject?Mark Hearn1,2, Peter J Whorwell MD1,2, Dipesh H Vasant PhD1,21Manchester University Foundation Trust, Neurogastroenterology Unit, Wythenshawe Hospital, Manchester, UK,2The University of Manchester, Manchester, UKShort running title: Stigma and irritable bowel syndromeCorresponding author details:Dr Dipesh Vasant PhD MRCP, Consultant Gastroenterologist, Manchester University Foundation Trust, Neurogastroenterology Unit, Wythenshawe Hospital, Manchester, United Kingdom, dipesh.vasant@mft.nhs.uk Summary:This review highlights the stigma associated with irritable bowel syndrome (IBS) and its impact on patient care and clinical outcomes. Stigma in IBS is prevalent amongst the general public, healthcare professionals and work colleagues, often related to poor understanding of the condition. Furthermore, it is associated with unsatisfactory outcomes including increased healthcare utilisation, psychological distress and impaired quality of life. Comparative studies suggest that stigma is much higher in IBS than in inflammatory bowel disease (IBD), a comparable, but 'organic' gastrointestinal disorder with overlapping symptomatology.? This review highlights the lack of interest in IBS amongst members of the general public and healthcare professionals, and the need for it to be better understood. These problems should be addressed by appropriate educational strategies to raise awareness, and interventions to minimise this problem. Keywords (3-7):Irritable Bowel Syndrome, Stigma, Perceived, Internalised, EnactedINTRODUCTIONIrritable bowel syndrome (IBS) is a functional gastrointestinal disorder, characterised by abdominal pain, abnormal?bowel function and bloating, in the?absence of structural abnormalities (1). As the most common functional gastrointestinal disorder worldwide, with an estimated prevalence of approximately 11% (2), IBS accounts for up to 50% of all gastrointestinal consultations (3). Despite the high prevalence, there remains uncertainty about its’ pathophysiology. Current understanding is that the aetiology is likely to be multifactorial, with studies demonstrating; visceral hypersensitivity (4-5), abnormal gut?microflora (6),?abnormal gut motility (5), and aberrant?central nervous system processing of painful stimuli (7).?Importantly, psychological factors including?stress (8) are factors that are not directly implicated in the pathophysiology, but are known to exacerbate symptoms. Stigmatisation towards a medical condition often arises when a person is linked to socially undesirable features of a disease (e.g. faecal incontinence), which result in stereotyping (9). The resultant labelling and discrimination towards the stigmatised individual and their medical condition, often leads to social exclusion (9). Patients may experience stigmatisation directly from others, termed enacted stigma. The other types of stigma, perceived and internalised stigma, both result from indirect negativity and discrimination towards the condition emanating from others. Unfortunately, IBS is a condition with many features that increase the likelihood of stigmatisation.?These?include?its’?unclear aetiology, the paucity of effective treatment options,?bowel related symptoms considered 'taboo' by many people (10),?high rates of psychiatric comorbidities (11) and?erroneous beliefs that this is a purely 'psychosomatic' illness (12-13).? Moreover, patients with IBS are vulnerable to stigmatisation from family members and colleagues due their unpredictable bowel habit and fear of incontinence. Indeed, many patients withdraw from daily activities or new situations (14). In addition, presenteeism in the workplace, which is where an individual is at work but ineffective, is common in IBS (15).? Patients often report that their abdominal pain severity is?similar to childbirth? (16) and this can lead to hopelessness and suicidal thoughts (17-18). The pain is commonly difficult to control, often leading to?analgesic escalation and?counter-productive overprescribing of opioids (19-20). Patients with IBS also frequently visit many different physicians and may even be subjected to unnecessary abdominopelvic surgeries including; histology negative appendicectomy, cholecystectomy and hysterectomy, due to misdiagnosis of the aetiology of pain (21-23). This can increase frustration and, as a result, patients become vulnerable to stigmatisation from healthcare professionals who have failed to find 'organic' explanations for their symptoms. The aims of this review were therefore to evaluate the evidence for stigmatisation in IBS and its’ detrimental effects on patients and clinical outcomes.?MATERIALS AND METHODSStigma in IBS: search strategy and selection criteriaA PubMed search was completed to identify peer reviewed articles in English. The search terms 'IBS', 'irritable bowel', ‘functional bowel disorder’ and ‘spastic colon’ were used in combination with the terms 'stigma', 'stigmatization', 'stigmatized', 'shame',' stereotype', ‘discrimination’, ‘prejudice’, ‘teasing’, ‘blame’ and ‘identity’ using the 'AND' operator. Search results were included up until 31 January 2019. All titles, abstracts and reference lists from identified articles were assessed for relevance.RESULTS: After excluding articles which did not meet inclusion criteria (n=313), twenty relevant papers on stigma and IBS were identified and included (Figure 1). These studies encompassed three slightly different, but interrelated, concepts of stigma namely; 'enacted' stigma (n=5), 'internalised' stigma (n=4) and 'perceived' stigma (n=6); the other 5 studies included a combination of these types of stigma (Table 1).?Each of these three types of stigma will be defined, and the key findings of the twenty studies are summarised in the relevant sub-sections.Enacted stigma and IBS'Enacted' stigma refers to the extent to which patients experience stigma from others.?For example, by stereotyping, discrimination, negative acts?and beliefs.?Whilst not an exhaustive list, these may come from?the general public or a healthcare setting,?potentially?leading?to unfair treatment, inadequate care or blaming the patient for their?illness (24-25). In the largest study to date, an online survey of 392 members of the general public, compared enacted stigma towards IBS, IBD and adult-onset asthma. Participants were recruited via social media platforms and a dedicated research website and were presented with clinical vignettes in a randomised fashion (25). Participants represented all geographic regions of the USA and the majority were Caucasian (326/392) and non-hispanic (313/392). Whilst 65 participants were noted to have the same diagnosis as the clinical vignette that they were presented with, the authors excluded any significant differences in emotional empathy towards any of the three conditions in these participants that would influence enacted stigma levels, and therefore included them in the overall analyses. Enacted Stigma was evaluated in this study using a 30 item enacted stigma scale questionnaire, which was completed by all participants based upon their reaction to the clinical scenario. Interestingly, there were significantly higher mean enacted stigma levels towards IBS when compared to IBD, and controls with adult-onset asthma (P=0.000). Furthermore, whilst all three groups were gender matched, males with IBS were significantly more stigmatised (P<0.001) compared to males with asthma. There were no other differences between stigma levels and gender between the other groups studied. Whilst the level of familiarity with IBD was inversely associated with stigma levels, this trend, was much weaker in IBS. In this study, members of the public who were judged more empathetic expressed significantly less enacted stigma towards all three conditions (25).?Of concern, enacted stigma also comes from clinicians?caring for?patients with?IBS. Consistent with the observations that patient gender may influence the level of enacted stigma towards a patient with IBS from the general public (25), another study has suggested that not only the gender of the patient, but the gender of the clinician may also influence reactions towards patients with IBS(26). This innovative study of 289 Swedish physicians during a national, written test examination, required them to describe the management of either a male or female IBS patient, after being presented with otherwise identical cases, except for the patient's gender. This IBS case was a specially designed research question that all candidates were required to complete as part of their test paper. Surprisingly, it was found that physicians were more likely to question and investigate alcohol misuse in the male IBS cases, whereas they were more likely to question and investigate thyroid disease in the female IBS cases. Female physicians were found to ask more questions than their male counterparts about previous medications and gynaecological problems to female cases, furthermore, sedating medications were more commonly prescribed to female patients by male physicians (26). Given these findings and that the cases were otherwise identical, the authors suggest that male and female clinicians react differently to gender cues, have different pre-conceptions and differing patterns of gender bias, which seem to impact on decision making and prescribing practice (26). Whilst the exact reasons for the gender dependant differences in clinician attitudes towards patients with IBS remain unclear, some insight is provided by an anonymised survey of sixty physicians (30 males, 30 females) at a large university medical centre in the USA. Significantly more physicians reported that they find IBS more difficult to diagnose in women than men (40/60 vs. 19/60, P=0.0003), but more difficult to manage in men than women (46/60 vs. 28/60, P=0.0014) (27). These data may therefore explain to some extent why male patients with IBS are most vulnerable to more enacted stigma and why the clinicians approach to management may vary to some extent depending on the gender of the patient due to differences in the perceived difficulty of establishing the diagnosis. Further evidence for enacted stigma emanating from healthcare professionals comes from a UK-based qualitative study using in-depth, semi-structured interviews with twelve clinicians (six clinicians working in gastroenterology and six GPs) (28). The six gastroenterology clinicians varied in seniority from senior house officer level to consultant. Overall, whilst most clinicians reported frustration either with treating IBS and/ or intolerance of the personal characteristics of IBS patients,?perhaps of most concern, was that gastroenterology clinicians had more negative views about IBS than GPs (28).?Reasons for these negative feelings and frustration?included medical uncertainty?and the struggle associated with a lack of effective treatments (28).?Also, frustration with the personalities of patients with IBS, often labelled as 'neurotic' or ‘heartsink’ was reported by many in the study (28).?However,?some doctors rejected these?stereotypes, reporting that good explanations, and sensitive, sympathetic ways of communicating with patients was highly effective (28).?Unfortunately, one of the main limitations of this study is that it is unclear whether the seniority of the gastroenterology clinicians participating affected the reported attitudes towards patients with IBS.Further evidence for enacted stigma towards IBS from healthcare professionals comes from a survey of 254 qualified nurses working in 18 UK hospitals. The recruitment for this study was by opportunity sampling with distribution to randomly selected hospital sites that accepted a request to participate. Surveys were largely distributed by senior nursing personnel at each participating hospital, with 10 to 30 completed questionnaires received from each site. Most respondents had very negative attitudes towards IBS regardless of their experience level or whether they suffered with IBS themselves (29). In this study almost all nurses (232/254) suggested that IBS patients 'waste doctor’s time'. Moreover, the majority of nurses that participated felt that the condition is 'all in their minds' (223/254), that patients were?'lazy' and?'craved?attention' (220/254). Many (214/254) said that IBS patients are 'unable to cope with life' and whilst over three quarters (198/254) felt that IBS patients have low pain thresholds.?Fifty percent of nurses in this study also reported a poor understanding of IBS from healthcare professionals (29). Interestingly, a qualitative study of transcripts from group discussions with 46 randomly selected primary care doctors in the UK, showed? more?positive attitudes towards IBS than chronic fatigue syndrome (CFS), which is another commonly stigmatised functional condition(30). Analyses from the group discussions carried out over an eight month period suggested less enacted stigma in IBS compared to CFS. Potential reasons for less stigma towards IBS include the specific anatomical location of the disease meaning a more understandable pathophysiology, as well as the nature of the patients, whereby clinicians stated patients with IBS seemed to 'battle through' their condition more.??Internalised stigma and IBSInternalised stigma is when patients take external negative beliefs, or attitudes about their condition to heart, accepting them and applying them to themselves (31). Internalising stigma can lead to reduced self-esteem and depression (32-33).?Several qualitative studies considering internalised stigma in patients with IBS have illustrated many common themes. For example, a large proportion of patients report shame or embarrassment due to their IBS (14, 34-37), taking in negative beliefs such as the condition being their fault. This leads to patients blaming themselves (35), for instance, because of their eating habits or stress and then feeling guilty (38). Patients also felt alienated due to IBS (14, 36, 39-40) and reported having an altered self-image, with some saying their illness made them feel 'less attractive' (35), or that bloating changed their appearance causing a?feeling of?self-disgust (40). Whilst some felt shame or disgust due to the taboo nature of their IBS symptoms(35, 37), others reported reduced sexuality, avoided getting involved in intimate relationships and found it difficult to share everyday life with a partner. Patients would often hide their IBS diagnosis from others, whilst some would avoid people altogether (34, 36, 40), withdrawing from society and isolating themselves. Patients reported that these behaviours result from?worrying that they may look or act strangely (39) due to the fear and distress caused by the unpredictability of their symptoms (14, 34). Similarly, and perhaps less well recognised, a survey of 851 school children aged between 11 to 17 years from a single co-education high school in the UK revealed that a large proportion of children (133/851) suffer from IBS symptoms which impact on their lives and those affected are significantly more likely than controls to report feeling 'different', 'embarrassed' or that their condition 'prevented them going out with friends' (36).?Adults with IBS also report that their IBS is extremely disruptive to family, social situations and relationships, to the extent that they lose out on things and describe it as a ‘loss of living’ (34). Whilst there is limited research on stigma in IBS in?different cultures, Hispanic patients with IBS reported more stigma than non-Hispanic participants in a North American study (39). Furthermore, an interesting study using detailed semi-structured interviews over a 14 month period from twelve Iranian patients with IBS at three Iranian university hospitals, revealed a high amount of internalised stigma (40), suggesting cultural differences may be relevant. Similar to the findings in Caucasian populations, Iranian IBS patients described feeling shame, keeping their IBS a secret or avoiding and hiding from society (40).?A Swedish study of nine IBS patients from a hospital outpatient clinic using detailed open interviews has suggested that there may even be gender differences in the ways that?people internalise stigma in IBS, with men tending to feel 'weaker' due to their condition (35). Whereas women felt guilty, believing the disease was their fault, or?felt they were?less attractive (35). Patients often describe guilt or feeling inadequate due to an inability to live up to high expectations of loved ones,?such as parents?feeling unable to look after their children (35). In a North American study of 104 university-based gastroenterology outpatient clinic patients with IBS, and 139 IBS patients fulfilling Rome III criteria recruited online from social media platforms, the authors evaluated the effects of internalised stigma on psychological well-being, health competence, and health outcomes. This study utilised validated tools for IBS related quality of life (IBS-QOL), anxiety and depression (NIH-PROMIS short form anxiety & depression scales) and internalised stigma levels (Internalised stigma for mental illness scale (ISMI)). The data from this study revealed that internalised stigma predicted 25–40% of the variance in psychological functioning, quality of life, healthcare utilisation, and health competence when controlling for stigma perception and disease variables (39). Perceived stigma and IBSPerceived stigma?is the extent to which an individual?with the disease?feels others hold negative beliefs, attitudes or behaviours towards their condition (25, 32). This may occur in social interactions (39), through teasing in schoolchildren (41), from healthcare providers or workplace colleagues (39). Higher levels of perceived stigma can lead to reduced QoL, self-esteem and medication adherence as well as increased psychological distress (42). In a North American study of gastroenterology clinic patients and internet responders with IBS, perceived stigma was found to be common, and was reported by 28/49 patients with IBS. Participants in this study underwent semi-structured interviews and a stigma scale was developed and subsequently validated in a further 148 patients with IBS. Out of 49 patients with IBS, 25 reported that the public’s knowledge of IBS is low, whilst 22/49 felt their condition is not taken seriously by others. Moreover, 22/49 claimed that others imply that their symptoms are 'self-inflicted' and 15/49 reported that others said the disease is 'all in their head' (43). Furthermore, 31/49 limit who they disclose their IBS to, and 16/49 had limited?roles due to their IBS (43). Patients with IBS perceive stigma from several groups of people including those from personal relationships (39) and in the workplace (43-44). Children and adolescents with chronic bowel disorders such as IBS may perceive significantly more stigma from classmates compared to those without bowel disorders. This is suggested by an online survey of 2,625 young adults aged between 18 to 26 years, where those with chronic bowel disorders (76 patients with IBS, 25 patients with IBD and 34 patients with coeliac disease) were 1.5 times more likely to recall being 'made fun of' (P=0.03) or 'laughed at' because of their weight (P=0.01) during childhood, compared to those without bowel disorders (41). Several studies report stigma?is often perceived from healthcare professionals (14, 39, 44), with patients reporting that they feel as though they aren't being listened to (45), taken seriously (37, 43), or their IBS is trivialised (28) and this is consistent with the literature on enacted stigma in IBS which has already been discussed. Women in particular may be vulnerable to this, with one study showing they are commonly treated as though they are 'whiny' or 'neurotic' by their healthcare providers. The majority of patients with IBS have been shown to be dissatisfied with their healthcare professional. This is highlighted by a USA national survey of IBS patients recruited via IBS related websites and networks which reported only 22/197 positive comments about their relationship with their healthcare provider, with a much higher proportion of negative comments (106/197) (45). Many patients have reported distrust with their clinicians (38, 45). However those who reported positive interactions were said to involve doctors acting as if they had something worth treating and giving legitimate medical explanations as well as being supportive and sympathetic (14, 28).???Interestingly, two studies on perceived stigma involved comparisons between IBS and IBD. The largest study, using a series of questionnaires, compared perceived stigma in 269 patients with IBS, and 227 patients with IBD (44). Patients were recruited from a university hospital gastroenterology outpatient clinic in USA and via online support message boards. This study found that IBS is far more stigmatised than IBD, with 73/269 patients with IBS reporting moderate to high levels of perceived stigma, compared with just 18/227 patients with IBD. Disappointingly, healthcare professionals were perceived to be the worst offenders, stigmatising IBS much more than IBD. The second study, based in a university teaching hospital in Canada, limited by its’ smaller sample size (only 38 patients with IBS and 51 patients with IBD), included data from several other functional conditions and controls with patients recruited from different specialty clinics. Although finding no significant difference between perceived IBS and IBD, this study demonstrated that patients with functional conditions perceived more stigma than controls (46). ??Perceived stigma in IBS is associated with poorer outcomes (44),?depression (46) and reduced QoL (47).?One study suggested perceived stigma affects QoL through illness intrusiveness?which is where an illness affects involvement in valued activities and interests (47).?These negative clinical outcomes are linked most strongly with perceptions of stigma from family members and significant others (44).?DISCUSSIONDespite progress in the understanding, diagnosis and management of functional gastrointestinal disorders (48), this review, which is the first to cover all aspects of stigma, highlights the fact that this is a major problem in IBS. Research in this area consistently finds that stigma associated with IBS is common and associated with significantly poorer outcomes. When considering strategies to reduce stigmatisation, it is striking that the detrimental effect on QoL from IBS stigma appears to be mediated by?illness intrusiveness, with fear of stigmatisation from others often leading to the disruption of daily activities, absenteeism, and social withdrawal. Given the very high prevalence of psychiatric comorbidities and suicidal thoughts present in IBS patients (18), internalised stigma, in particular, appears to be an important factor that needs addressing. Indeed, this type of stigmatisation in other health conditions is known to cause detrimental psychological effects and impairment of QoL (49-53). Importantly, internalised stigma in IBS appears to be associated with 'perceived' stigma from significant others and healthcare professionals (39). Notably, our literature review suggests that stigma often emanates from healthcare professionals (28-29, 39). In several studies, healthcare professionals admitted that 'medical uncertainty', and the struggle to find effective treatments, poor understanding and misconceptions about the condition (28-29) contributed to their frustration. Similar experiences have been reported by patients suffering with gastrointestinal motility disorders (54). This review has identified a strong need to improve training for healthcare professionals in managing functional gastrointestinal and motility disorders, as this is likely to be an effective way of reducing stigmatisation. Not only is better training in neurogastroenterology and motility disorders needed (55-56), but healthcare professionals caring for these patients should be provided with specific communication skills training in order to optimise the patient-provider relationship (57). This would help them to avoid 'enacted' and 'perceived' stigmatisation during their consultations, which have consistently been shown to result in poor doctor-patient interactions, poor adherence, reduced QoL, anxiety, depression, and ultimately higher healthcare utilisation (28, 39, 42-45). Patients often feel their condition is trivialised or not taken seriously by their healthcare professionals with the implication that their illness is self-inflicted or 'all in their head'. As a result, many patients report a lack of satisfaction from consultations and a lack of trust in their doctors. Traditionally there have been few effective pharmacological options for patients with IBS which may explain some of the difficulties experienced by healthcare providers. In fact the lack of effective therapies has previously been cited as the reason for relatively low pharmaceutical costs in IBS, with most of the expenditure consumed by recurrent outpatient attendances, hospital admissions and significant indirect costs (58). However, in recent times there has been the emergence of several novel medications which have been shown to be effective in moderate to severe IBS (59). Two of these, Eluxadoline, for IBS-D (60) , and Lubiprostone, for IBS-C (61) were initially approved in the UK and in Europe but were subsequently withdrawn due to lack of demand and poor sales. Whilst the exact reasons for this poor uptake of these medications are unclear, the lack of interest in IBS is likely to be an important factor. Although there are few comparative studies, the apparent differences in IBS and IBD stigma are striking. Despite the fact that many of the symptoms of these two conditions overlap, IBS sufferers clearly endure more stigma than their IBD counterparts (25, 44). Similar trends have been observed in other 'functional' conditions which have been shown to be more stigmatised than comparable non-functional diseases (46). There is also evidence that stigmatisation in chronic diseases may negatively influence on the amount of research that is carried out in such conditions (9, 62-63). Research funding allocation from major national funding bodies is recognised as a major driver for scientific and medical progress and therefore it is vital that resources are allocated proportionately to disease burden and prevalence (64). Interestingly, despite the prevalence of IBS being approximately 10 times higher than IBD, comparative studies on research funding in gastrointestinal diseases conducted in both North America and Europe have confirmed a marked disparity which is disproportional to the prevalence and relative burden of these diseases (58, 64-66). Whilst the exact reasons for the significant underfunding of IBS relative to IBD remains unclear, it is possible that stigmatisation may be a factor. For example, previous work has shown that stigma and discrimination can lead to negative effects on public views about resource allocation (67-68). Single disease charities and advocacy groups can have a large impact on policy and research funding (69) and it may be harder for stigmatised diseases to achieve the same level of support from such organisations. Moreover, if a condition is seen as having a cause that 'should be controllable by the patient', it is possible that funding bodies may feel that such disorders are 'less deserving' of resources (70). ?This review, in addition to raising awareness of stigmatisation in IBS, has highlighted some areas for future research and development to address the problem. Reassuringly, stigmatisation was not universal amongst all healthcare providers in these studies, with some doctors and patients reporting good outcomes, when stereotypes were avoided, communication was sympathetic as well as empathetic and symptoms were legitimised (28). Consequently, it may be worth trying to identify what patients find most useful from an IBS consultation so that this information can be used for training purposes in the future. A recently proposed, dedicated training neurogastroenterology and motility curriculum is a positive step, but is in its’ infancy (71). It is also imperative that medical students are taught how to hide their frustration when confronted with a patient with negative tests and continuing gastrointestinal symptoms or any other unexplained medical symptoms, as this is also likely to improve outcomes. The data presented here have also indicated that a lack of understanding and emotional empathy amongst the general public is also associated with stigmatisation. In other commonly stigmatised conditions, increasing education and familiarity with a disease has been shown to reduce stigma and promote a more positive attitude towards the illness (72-73). Efforts to increase public understanding of IBS may, therefore, be effective in reducing enacted stigma.?Finally, all the studies identified, with one exception, were confined to Caucasians. As IBS has a worldwide prevalence, it would be interesting to compare stigmatisation across different cultures,?to observe whether some areas?are better or worse than others. ?In conclusion, IBS is associated with high levels of stigma, which detrimentally affects clinical outcomes. There is, therefore, an urgent need for further research into stigma and interventions to minimise this problem.References1.Drossman DA. Functional Gastrointestinal Disorders: History, Pathophysiology, Clinical Features, and Rome IV. Gastroenterology. 2016 2016/05/01/;150(6):1262-79.e2.2.Canavan C, West J, Card T. The epidemiology of irritable bowel syndrome. Clinical epidemiology. 2014;6:71-80.3.Gunn MC, Cavin AA, Mansfield JC. Management of irritable bowel syndrome. Postgraduate medical journal. 2003 Mar;79(929):154-8.4.Mertz H, Naliboff B, Munakata J, Niazi N, Mayer EA. Altered rectal perception is a biological marker of patients with irritable bowel syndrome. 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Social psychiatry and psychiatric epidemiology. 1996 Nov;31(6):321-6.Author Contributions: MH performed a literature review and wrote the manuscript, PJW and DHV were involved in conception, helped write and revise the manuscript and provided critical intellectual input.Acknowledgements: The authors are extremely grateful to Mrs Vivien Miller who proof read the final version of the manuscript.Funding source: No external funding was received for this work.Conflicts of Interest/ financial disclosures: Over the last 3 years, DHV has acted as a consultant for Allergan and Shire and PJW has acted as a consultant or received research funding from Danone, Allergan Pharma, Ironwood Pharma and Salix Pharma but it is not felt that the contents of this paper have been influenced at all by any of these relationships.Tables Table 1 Summary of published studies on Irritable Bowel Syndrome and StigmaAuthor et al. (year)Type(s) of Stigma studiedPopulation MethodsKey FindingsBj?rkman I (2013)(38)Internalised, PerceivedPatients with Rome II IBS, tertiary clinic, n=19 (10 male).Qualitative interviews individually and in groupsPatients reported; guilt, self-blame, embarrassment and shame and perceived stigma and gender stereotyping from healthcare providers.Borum ML (2002)(27)EnactedInternal Medicine physicians, n=60 (30 male)Survey of physicians perceptions on the ease of diagnosis and management of IBSDoctors have preconceptions about the difficulty of diagnosis and management of IBS depending on the patient’s gender. Dancey CP (2002)(47) PerceivedPatients with IBS diagnosed by a qualified doctor, recruited by 2 IBS charities, n=117 (54 males) Mail questionnaires including; 11 item perceived stigma questionnaire, IBS-QoL, and the illness intrusiveness ratings scale.Significantly correlation between perceived stigma and decreased QoL in men (r=-0.63, p <0.001) and women (r=-0.39 p<0.001), but this association was stronger in men (P=0.02). Perceived stigma correlated with illness intrusiveness in men (r=0.62, p<0.001) and women (r=0.4, p<0.001).Dixon-Woods M (2000)(28)Enacted, perceivedGastroenterologists n=6, General Practitioners n=6 and n=14 patients with clinical diagnosis of IBS from gastroenterology clinicsQualitative semi- structured interviews with patients and clinicians.Gastroenterologists held more negative views towards IBS patients than GPs. Positive interactions were when patients were taken seriously.Drossman DA (2009)(34)InternalisedPatients meeting Rome III IBS criteria, n=16, recruited by the International Foundation for Functional Gastrointestinal Disorders Qualitative: Structured/ facilitated group discussionPatients reported shame, avoiding others, losing out on things and a loss of living.Farndale R (2011)(14)Internalised, perceivedPatients with either clinical diagnosis of IBS or Rome II/III criteria, n=18, identified from primary care databaseQualitative semi-structured interviews Patients reported shame, embarrassment, alienation and IBS being part of their identity. Stigma perceived from HCPs. Better experiences when HCPs were sympathetic.H?kanson C (2009)(35)InternalisedPatients with clinical diagnosis of IBS n=9 recruited from gastroenterology clinicQualitative open-ended interviews with IBS patients.Patients reported an altered self-image, shame, distrust of body, feeling tired, self-blame, finding solutions.Halpert A (2011)(45)PerceivedPatients with Rome III criteria for IBS, n=57, recruited via IBS websites, advertisements by support groupsBaseline IBS-QoL and IBS-SSS, Qualitative online expressive writings in IBS patients and quantified what can be done to improve patient-HCP relationship Patients reported not being listened to, not trusting and not being satisfied by their HCP. Listening and empathy from HCP important to maximise relationship.Hamburg K (2004)(26)EnactedTrainee doctors (n=289) taking a national examination with a research case includedRandomly allocated case studies (identical apart from patient gender) with open-ended questions answered by doctors under examination conditions.Patient gender, and gender of clinician, may affect physician reactions to IBS cases and influenced clinical decision making including prescribing practice.Jones PJ (2009)(43)PerceivedPatients with Rome II IBS criteria(n=49 interviewed and n=148 questionnaire study)Part 1: Structured interviews to develop perceived stigma scale. Part 2: Patients completed 10-item perceived stigma scale questionnaire57% of interviewees perceived stigma. Patients report highest stigma from co-workers, employers, friends. Patients perceived lack of interest and understanding from others.Letson S (1996)(29)EnactedQualified nurses (n=254) from 18 hospitals Nurses completed 54-item questionnaire.Majority of nurses reported IBS patients were lazy and craved attention (87%), wasted doctors time (92%), unable to cope with life (83%), had low pain thresholds (78%) and condition was all in their minds (88%).Looper K (2004)(46)PerceivedPatients with functional somatic syndromes and comparable medical conditions n=238 (IBS n=38, IBD n=51)Perceived stigma measured by attitudes of others scale. Comparison of patients with functional conditions vs similar organic disease. Patients with Functional conditions perceived more stigma than controls (p<0.005). No significant difference found between IBS and IBD.McCormick JB (2012)(37)Internalised, PerceivedPatients with chronic GI conditions n=136 (IBS n=38, Crohn's n=47, Ulcerative colitis n=33)22 focus groups of 4-10 patients with chronic GI conditions. Qualitative semi-structured open questions.Patients report questioning self-identity, shame, embarrassment due to taboo symptoms. Report not being taken seriously by HCPs, told it is all in their heads. Mohebbi Z (2017)(40)Internalised IBS patients Rome III criteria n=12, from three clinics in Iran Qualitative, semi-structured interviews.Patients report stigma through bad sense of self, shame, keeping their IBS a secret and avoiding people in fear of being stigmatised.Quick V (2015)(41)PerceivedYoung adults (aged 18-26 years) n=2625 participated, n=135/2625 had a bowel disorder Online questionnaires including self-esteem scale, depression, QoL and Perception of teasing scale Young adults with symptoms of chronic bowel disorders were 1.5 times as likely to be ‘made fun of’ (P=0.03) or ‘laughed at’ due to their weight (P=0.01) than healthy controls. They were also more likely to be upset from weight teasing insults (P=0.006).Raine R (2004)(30)EnactedGeneral Practitioners n=46Qualitative analysis of group discussions of clinical scenarios and/or a systematic review of mental health interventions, comparing CFS and IBSThe GPs negatively stereotype chronic fatigue syndrome more than IBS.Taft TH (2014)(39)Perceived, InternalisedPatients with Rome III IBS (n=243)Questionnaire study including; adapted Internalised Stigma scale for mental illness and perceived stigma scale for IBS.Internalised stigma predicted impairment in QoL and psychological distress. Patients reported perceived stigma from HCPs, work colleagues and personal relationshipsTaft TH (2011)(44)PerceivedPatients from a gastroenterology outpatient clinic n=496 (IBS n=269, IBD n=227)IBS and IBD patients completed series of online questionnaires including PSS-IBS (Perceived stigma scale-IBS) , BSI-18 (Brief symptoms inventory-18), RSES (Rosenburg self-esteem scale), GSES (General self efficacy scale), SF-12 (short form 12-health status/outcomes)27% of patients with IBS report moderate to high levels of stigma, compared to 8% in IBD (P≤0.002). Stigma commonly emanates from HCPs and workplace. Perceived stigma linked to negative outcomes such as depression. Stigma from family and significant others associated with worst outcomesTaft TH (2017)(25)EnactedGeneral public (n=392) recruited via social mediaVignette presented electronically in randomised order to participants (asthma, IBS, or IBD case) and then 30 point enacted stigma scale (ESS) questionnaire completedParticipants stigmatised IBS more than asthma and IBD (P=0.000). Reduced IBS stigma associated with higher levels of familiarity with the condition (P<0.05) and more emotional empathy (P<0.01).Thompson S (1996)(36)InternalisedSchool children (aged 11-17 years) n=851School children completed at 20-item questionnaire about bowel symptoms and psychosocial pared to controls, children with IBS symptoms were more likely to report being different than others (P=0.002), embarrassed to talk about their health (P=0.0001) and that their health prevented them going out with friends (P=0.03)Abbreviations: IBS, irritable bowel syndrome; QoL, quality of life; GP, general practitioner; HCP, health care professional; IBS-SSS, IBS-symptom severity scale; IBS-QoL, IBS-Quality of life; IBD, inflammatory bowel disease; CFS, chronic fatigue syndromeFigure LegendsFigure 1. Flow diagram for literature review of stigma in irritable bowel syndrome ................
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