P375 Self-management in inflammatory bowel disease: A perspective of patients and caretakers

Abstract

Background: In recent years, self-management (SMN) has been advocated as an instrument to empower patients and to reduce healthcare costs in chronic diseases. Although SMN programs have been developed for inflammatory bowel disease (IBD) patients, little is known about SMN preferences of IBD patients and caregivers. This study aimed to gain insight in what caregivers and patients consider good SMN-options, and which patient or disease-related factors caregivers consider of influence on patient SMN preference. Method(s): Caregivers (46 nurses and 50 gastroenterologists) and 100 patients were invited to participate either when visiting the hospital or by email survey. The survey contained questions regarding the patients and caregivers perspective on ways to apply SMN in an outpatient setting (12 options). Both caregivers and patients were asked to name their top three options. Also, caregivers were asked which factors might influence a patients' SMN preference (disease duration, activity and perception). For patients, disease activity was scored using the mobile health index, long-term disease course was scored using the Ibsen-4 score, and illness perception was scored using the b-IPQ. 73% of caregivers and 88% of patients approached responded to the survey. Result(s): 38 nurses, 32 physicians and 88 patients responded to the survey. Only 50% of patients were willing to be more involved in SMN. The three most appealing options for nurses regarding SMN were: availability of a telemedicine app, Skype/Facetime caregiver consultations, and an at-home calprotectin test. Physicians preferred the availability of a telemedicine app, an at-home calprotectin test, and giving patients control of their own records. Patients preferred measuring blood levels at home, an at-home calprotectin test, and access to laboratory test results. Physicians thought that the three most important factors influencing SMN in patients were: level of trust between physician and patients, self-efficacy, and disease perception. Nurses suggested that self-efficacy, disease perception, and disease activity were most important. However, disease perception and disease activity did not influence patients' SMN preferences. Patients and caregivers agreed that a combination of online and regular outpatient consultations were the most appealing. Conclusion(s): Overall, nurses and physicians agree on many aspects of SMN in IBD-care. However, more physicians are in favour of making patients in charge of their patient records. Nurses and physicians agree that patient characteristics, in contrast to disease characteristics, influence SMN, with self-efficacy being the most important. This study calls for further research on what patients and caregivers want and need from SMN, as SMN is a team sport.