OP012 Information needs and concerns of patients with Inflammatory Bowel Disease: What can we learn from participants of a national clinical cohort?
V. Pittet*1, C. Vaucher1, M.H. Maillard2, M. Girardin3, P. de Saussure3, G. Rogler4, P. Michetti5
1Institute of Social and Preventive Medicine, Healthcare Evaluation Unit, Lausanne, Switzerland, 2Lausanne University Hospital, Department of Gastroenterology & Hepatology, Lausanne, Switzerland, 3Geneva University Hospital, Division of Gastroenterology & Hepatology, Geneva, Switzerland, 4University of Zurich, Gastroenterology and Hepatology, Zurich, Switzerland, 5Clinique La Source-Beaulieu, Crohn and Colitis Center, Lausanne, Switzerland
Patients suffering from Inflammatory Bowel Disease (IBD) are confronted with needs and concerns related to the specificity and uncertainty of their illness condition. This study aims to explore information expectations of patients in a national IBD cohort in Switzerland (SIBDC) and to assess their association with clinical, socio-demographic and psychosocial characteristics.
A semi-narrative questionnaire survey was conducted to investigate information-seeking behaviour among 1506 patients from the SIBDC, in 4 different stages of their disease: 1) when experiencing the first symptoms, 2) at the time of diagnosis, 3) in active phases, and 4) during remission. Two focus group discussions based on vignette cases describing clinical situations were then conducted with 14 IBD patients to explore and assess the relevance of the survey's findings. Narrative answers and discussions were fully transcribed; content analysis was undertaken, and interactional dynamics were compared for the two discussions. Data collected within the framework of the SIBDC was used to characterize responders to the survey.
728 patients (51%) replied to the survey (responders); half of them were males (N=346), 56% were diagnosed with CD (N=407). Responders had a median duration of disease of 8 years, 90% were secondary/tertiary level educated, and 62% had a full/part-time working activity. Almost half of patients sought for information, regardless of the stage of the disease. Importantly, 27% of them were dissatisfied with information at the time of first symptoms. The main reasons for dissatisfaction were: misdiagnosis, symptoms not taken into consideration, insufficient knowledge on disease from other specialists, and unclear information. During flares, 43% were concerned about drugs and therapies (overall information on drugs and side effects, alternative medicines, surgery), as compared to 11% at diagnosis and 30% in remission. Concerns on research and new developments were those of 57% in remission (5% at diagnosis, 24% during flares). Needs for information related to daily disease management were expressed by 28% of patients with active or quiescent disease. The focus groups confirmed a perceived lack of information about general functioning and course of the disease, treatments and their risks, and extra-intestinal symptoms and manifestations.
This study shows that information remains insufficient for patients with IBD, and their relatives. A lack of information in specific domains can cause stress or anxiety and hinder detection of symptoms, or clinical outcomes. Better information giving should be considered as a decisive mean step to potentially improve outcomes, e.g., patients' adherence to treatment and quality of life.