P707 Healthcare expectations of patients with inflammatory bowel disease: a survey amongst 1 089 participants in a European bilingual clinical cohort
V. Pittet*1, C. Vaucher1, M. H. Maillard2, F. Froehlich3, B. Burnand1, P. Michetti4
1Institute of Social and Preventive Medicine, Healthcare Evaluation Unit, Lausanne, Switzerland, 2Lausanne University Hospital, Department of Gastroenterology & Hepatology, Lausanne, Switzerland, 3University Hospital Basel, Division of Gastroenterology & Hepatology, Basel, Switzerland, 4Clinique La Source-Beaulieu, Crohn and Colitis Centre, Lausanne, Switzerland
Patient-reported perceptions on healthcare are important components to be considered within a holistic view of quality of care. Patients’ expectations on treatments and disease management may be indicative of their illness representations and of how they perceive quality of care. Our aim was to explore expectations of patients included in the national bilingual Swiss IBD cohort (SIBDC).
Two focus groups were conducted with 14 IBD patients, to explore expectations on treatments and disease management. Using results from qualitative content analysis, we built a questionnaire comprising 22 questions that was sent to 2 350 SIBDC patients. Answers were collected on a Visual Analogue Scale (VAS) ranging from 0 to 100. Medians (interquartile range [IQR]) were calculated. Principal component analysis (PCA) was used to draw main expectations dimensions, and linear multiple regressions were performed to assess associations with patients characteristics.
In total, 1 089 patients replied to the survey: 54% females, 54% CD, 35% tertiary level educated, and 72% full- or part-time employed. The 9 most important expectations are listed in Table 1.
Table 1 Median (IQR) of the top 9 expectations; * Wilcoxon rank-sum test p < 0.002
|All||Men||Women||German- speaker||French- speaker||Age < = 40||Age > 40|
|Easier drug administration||90 (71–96)||88 (66– 95.5)*||90 (75–97)*||87 (65–96)*||92 (81–9 7)*|
|Having information on treatment adverse effects||89 (71–96)||85 (65.5–96)*||90 (76–96)*|
|Good coordination between general practitioners and specialists||89 (71–96)||87 (67–96)*||92 (75–97)*||81 (61–96)*||91.5 (79–9 6)*|
|A quality healthcare system||89 (66–96)|
|Having information on extra-intestinal symptoms and manifestations||87 (64–96)||80 (54–95)*||90 (71–97)*|
|Receiving appropriate care for physical symptoms||79 (50–94)||72 (49–90)*||85 (52–95)*|
|Receiving advices on diet||76 (48–94)||70 (47–92)*||82 (48–95)*|
|Acknowledgement of the disease by general practitioners||76 (48.5–95)||67.5 (48–93)*||81 (49–96)*|
|Having overall information on existing treatments||76 (46–94)||72 (44–93)*||86 (53–96)*|
Depending on expectations, significant differences were observed according to gender, age, or language. PCA yielded 4 main dimensions: expectations linked to communication around the disease (D1), appropriate information related to daily disease management (D2), information related to treatments (D3), and disease recognition (D4). Level of expectancy was higher for women (D1 to D4), French-speakers (D2, D3), age (D3), and tertiary level educated patients (D2).
Expectations were focused on information and communication, and seem to pave the way for quality assessment initiatives. Women and French-speakers had increased expectations in specific domains as compared with men and German-speakers, which might indicate care variations according to gender and regions. In addition, patients seem to request a more active participation in disease management.