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.
Participation and healthcare: a survey investigating current and desired levels of collaboration between patient organizations and hospitals Background: Patient participation is widely seen as a way of improving the quality of healthcare. It is encouraged by public health policies, but the systematic development and implementation of these policies in practice is still lacking. Objective: To facilitate a structural approach to the involvement of patient organizations at the meso level, we conducted an explorative survey to gain an understanding of the current state of collaboration between patient associations and hospitals, and to gain an insight into the needs and wishes of these patient organizations. Design: 111 patient organizations participated in our cross-sectional web-based survey. The results were analysed using a quantitative and qualitative approach. Results: The majority of the patient organizations in the survey aspired to "advise" healthcare professionals regarding service development and evaluations. They wish to participate in hospital processes, produce brochures to inform their peers and provide support for peers. The aim of their collaboration with hospitals is fourfold: to offer complementary services to patients of the hospital, increase patient satisfaction, facilitate patient empowerment and increase the quality of care. In general, the organizations reported a need for increased support. Discussion and conclusion: The ultimate ambition of patient organizations is to collaborate more closely with professionals and become an acknowledged partner in patient care networks. After all, successful collaboration can produce synergies and establish a complementary type of care and information for both patients and caregivers.
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