P559 Treatment goals in IBD: a perspective from patients and their partners
Peek-Kuijt N., Aantjes M., Verwey M., van der Meulen-de Jong A., Maljaars P.
Leiden University Medical Centre, Department of Gastroenterology and Hepatology, Leiden, Netherlands
As Inflammatory Bowel Disease (IBD) is a chronic disease, many treatment decisions have to be made during its course. For physicians, an important treatment aim is mucosal healing (normal colonoscopy) as it improves long-term outcomes. Little research has focused on what patients see as treatment goals, whether this differs between patients and partners, and whether their views can be adjusted by patient education, to bring patient and physician goals closer together and improve shared decision making.
During an IBD patient information day in our hospital (190 patients and partners), a survey was distributed asking patients and their partners their preferred treatment goals after 6 weeks and 6 months. Treatment goals were divided between short-term goals (such as being symptom-free) and long-term goals (such as preventing surgery). A validated mobile health index (mHI) for Crohn's Disease (CD) and ulcerative colitis (UC) was used to assess disease activity. These two questionnaires consist solely of 4 Patient Reported Outcomes (PROs) for remote monitoring of patients with IBD (van Deen et al). After receiving the initial survey, an IBD specialist gave a presentation about treatment goals and why physicians aim for mucosal healing. After this, patients and partners were asked to fill in the same survey.
91 patients (of which 67% had CD and 33% UC) and 34 partners responded to the initial survey and 114 people (81 patients, 33 partners) to the after-talk survey. Age, gender and education did not affect the individual treatment goals. Most respondents chose “symptom-free” as goal. Patients with higher disease activity chose more short-term goals than long-term goals (p=0.03) at 6 weeks. Compared to patients, partners chose more short-term goals (p=0.03) at 6 weeks. Only 4.2% of all respondents chose a normal colonoscopy as goal at 6 months. After the presentation, the number of people who chose a normal colonoscopy at 6 months as treatment goal increased significantly (18.3%, p=0.001), of which 80% were patients and 20% partners.
Patients' 6-week treatment goals focused on being symptom-free and a high QOL, especially those patients with high disease activity. Partners chose more short-term goals than patients at 6 weeks. Six month-goals are more balanced between long- and short-term goals in both groups. The discrepancy between the physician's treatment goal, “a normal colonoscopy”, and goals of patients and partners, can be improved by providing patients tailored information regarding treatment goals. This proves that better information and/or improved communication techniques help patients understand that a normal colonoscopy as treatment goal may lead to achieving other treatment goals.