Patient activation and its association with health indices among patients with inflammatory bowel disease

Background: Patient activation refers to patients’ independence in daily activities, involvement in the therapeutic process, and ability to manage their health. This study examined the association between the activation of patients with inflammatory bowel disease (IBD) and its effect on health indices. Objectives: To evaluate the association between the activation of patients with IBD measured by patient activation measure (PAM-13) questionnaire with disease activity and quality of life in IBD. Design: A retrospective cross-sectional study. Methods: This study included patients with Crohn’s Disease (CD) or ulcerative colitis (UC) followed at a large medical center in Israel, who were recruited during routine visits. They answered weekly questionnaires using a mobile smartphone application that included clinical and emotional disease parameters, including IBD control, quality of life [short IBD quality of life questionnaire (SIBDQ)], patient-reported outcomes measurement information system (PROMIS-10) and PAM-13. Additional clinical parameters were collected from electronic medical records. Results: Among 201 patients (113 females) who responded to the questionnaires, 152 (75.6%) had CD and 49 (24.4%) UC. For PAM-13, 158 (79%) patients were at PAM-13 levels 3–4 (mean score: 68.5, range: 60.0–73.1) and 43 (21%) were at levels 1–2 (mean score: 45.2, range: 40.9–49.9). PAM-13 levels were correlated with IBD control (r = 0.19, p = 0.023), SIBDQ (r = 0.20, p = 0.010), and PROMIS-10 score (r = 0.24, p = 0.017). Conclusions: Our findings demonstrate the importance of patient activation and engagement in IBD. Knowledge of patient activation may enable caregivers to predict levels of self-care and the likelihood of compliance with health behavior recommendations.