Table 1.

Relevant studies exploring stigmatisation in patients with inflammatory bowel disease

Authors	Year	Country	Type of stigma	Sample size	Key points
Wyke et al.	1988	UK	Perceived, enacted	170	Most individuals disclosed IBD, most co-workers/employers were understanding, IBD led to changes in work
Drossman et al.	1989	USA	Perceived	150	Most common concerns related to surgery, energy level and body image
Salter	1990	USA	Internalised	Not clear	Ostomy allows “to control” the disease, feeling clumsy during sexual intercourse
Mayberry et al.	1992	UK	Enacted	58 (CD only)	Unemployment, CD patients more likely to conceal their disease to employers
Moody et al.	1992	UK	Enacted	53	Employers unwilling to employ an individual with IBD and to give time off to attend clinics
Mayberry	1999	UK	Enacted	195 (personnel managers)	Unwillingness to provide time to see the physician, IBD jeopardises promotions
Moody et al.	1999	UK	Perceived	64	Many students complain of teachers not being sympathetic, underachievement due to ill health
Moskovitz et al.	2000	Canada	Perceived	86	Poor social support is related to worse surgical outcomes
de Rooy et al.	2001	Canada	Perceived	241	Greater stigma perceived by elderly, females, patients with UC, and with low level of education;
Levenstein et al.	2001	Cross-national	Perceived, internalised	2002	Complications and variable disease evolution elicit concern; specific issues vary among countries
Daniel	2002	USA	Perceived, enacted, internalised	5	Impaired body image, feeling different, ashamed and worried about others thinking IBD is used for secondary gain
Krause	2003	Chile	Internalised	19	IBD as illness that invades all dimensions of life
Looper and Kirmayer	2004	Canada	Perceived	89 (51 IBD)	Higher level of perceived stigma in functional disorders vs other medical conditions (including IBD)
Finlay et al.	2006	USA	Perceived	148	Major differences across ethnic groups regarding knowledge of disease and social support
Smith et al.	2007	USA	Internalised	195 (71 with IBD)	Disgust related to low colostomy adjustment, low life satisfaction, low quality of life and to stronger feelings of stigmatisation
Simmons et al.	2007	UK	Internalised	51	Stoma acceptance, interpersonal relationship and location of the stoma were associated with adjustment
Taft et al.	2009	USA	Perceived	211	Perceived stigma affects quality of life
Voth and Sirois	2009	UK	Internalised	259	IBD self-blame is related to poorer outcomes
Taft et al.	2011	USA	Perceived	496	Greater stigma in IBS than IBD, patient outcomes more affected in stigmatised IBD patients
Dibley and Norton	2013	UK	Perceived	611	Emotional and psychological impact, feelings of stigma, limited lives, practical coping mechanisms
Czuber-Dochan et al.	2013	UK	Perceived	46	IBD-related fatigue not addressed in medical consultations
Taft et al.	2013	USA	Internalised	191	Social isolation common due to stigma
Czuber-Dochan et al.	2014	UK	Enacted	20 (healthcare professionals)	IBD-related fatigue poorly understood
Frohlich	2014	USA	Perceived	14	Feeling stigmatised by partner, healthcare professionals, and colleagues
Saunders	2014	UK	Perceived	16	Non-disclosure because of shame may lead to experiencing blame
Bernhofer et al.	2017	USA	Perceived	16	Feeling labelled as unable to tolerate pain
Rohde et al.	2018	USA	Enacted	127	Enacted stigma among college students decreases when IBD is disclosed
Gamwell et al.	2018	USA	Perceived	80	Indirect effect of perceived stigma on depressive symptoms as it impacts on social belongingness
Dibley et al.	2019	UK	Perceived, internalised	18	Kinship stigma is present in IBD patients

CD Crohn’s disease, IBD inflammatory bowel disease, IBS irritable bowel syndrome