ABSTRACT
BACKGROUND: We examined the degree to which adults with inflammatory bowel disease (IBD) integrated their illness into their identity and linked illness identity to important patient-reported outcomes. METHODS: A total of 109 adults with IBD, aged 18 to 60 (Mage = 35.93; 77% women) completed questionnaires on the four illness identity dimensions (rejection, acceptance, engulfment, and enrichment), medication adherence, depressive symptoms, life satisfaction, health status, and health-related quality of life (HRQoL). The illness identity scores of adults with IBD were compared to existing data from adults with congenital heart disease (CHD), refractory epilepsy (RE), and multisystemic connective tissue disorders (MSDs) using multivariate analyses of covariance. In adults with IBD, associations between illness identity and patient-reported outcomes were examined through hierarchical regression analyses, controlling for sex, age, illness duration, diagnosis, self-reported flares, and co-existing illnesses. RESULTS: Adults with IBD scored higher on rejection and engulfment and lower on acceptance than adults with CHD, lower on rejection but higher on engulfment than adults with RE, and higher on engulfment and enrichment but lower on rejection than adults with MSDs. Higher engulfment scores were related to more depressive symptoms, lower life satisfaction, and a poorer health status and HRQoL. In contrast, higher enrichment scores were related to more life satisfaction and a better HRQoL. Rejection and acceptance were not uniquely related to any of the outcomes. CONCLUSIONS: Adults with IBD showed relatively high levels of engulfment. Substantial associations were observed between illness identity and patient-reported outcomes, with engulfment being the strongest, most consistent predictor.
Subject(s)
Inflammatory Bowel Diseases , Quality of Life , Adult , Humans , Female , Male , Inflammatory Bowel Diseases/complications , Surveys and Questionnaires , Self Report , Health StatusABSTRACT
In 2018, around 1500 self-help groups existed in the Belgian region of Flanders, dealing with almost 200 different diseases or problems. Most have existed for 25 to 35 years, with new initiatives added annually. The first part of this article describes the development of self-help groups and patient participation in Flanders. The second part discusses the legal framework for the participation of patient associations at the micro-, meso-, and macrolevel. The third section describes two current practical examples of patient participation in the health system: the "self-help-friendly hospital" and "the integration of experts by experience in hospitals" with initial interim results. Finally, we discuss development and growth opportunities, as well as needs of self-help groups and patient associations and their support agencies and umbrella associations. More support for self-help groups and increased recognition of their achievements can promote structural forms of cooperation with the professional health system and boost patient participation.
