Improving Care for Recently Diagnosed Inflammatory Bowel Disease Patients: Lessons Learned From a Patient-Centred, Mixed-Method Study.

BACKGROUND AND AIMS: Newly diagnosed inflammatory bowel disease [IBD] patients need to deal with the physical and emotional impact of the disease. We aimed to evaluate care for recently diagnosed IBD patients from the patient perspective and assess themes for improvement. METHODS: A mixed-method study with adult IBD patients 4-15 months after diagnosis was performed. First, relevant themes were identified through semi-structured interviews until data saturation. Next, a questionnaire assessing satisfaction with care [SATI-Q] was developed and validated with 15 items divided into two domains: medical care and information and psychosocial care. Higher scores indicate higher patient satisfaction [0-100]. RESULTS: We interviewed 20 patients. Next, 84/107 patients completed the SATI-Q: 51% female, aged 37 years (interquartile range [IQR 25-58]), 36% Crohn's disease, disease duration 9 months [IQR 6-12] and 74% in clinical remission. The median SATI-Q score was 82 [IQR 72-92]. Patients were more satisfied with medical care than with information and psychosocial care (score 92 [IQR 81-98] vs 74 [IQR 60-90], p < 0.001). Patients were least satisfied with the attention given to IBD-related emotions and information on IBD medication, diet and future perspectives [77, 76, 57 and 54% of patients satisfied]. Patients [81%] preferred spoken information. Only 26-27% preferred brochures and websites. CONCLUSIONS: In this study, the SATI-Q questionnaire was developed and validated to assess patient satisfaction with care in early IBD. Our findings suggest that psychosocial care and information on IBD medication, diet influence and future perspectives for recently diagnosed IBD patients require improvement.

Mobile application to monitor inflammatory bowel disease patients on intravenous biologic treatment: a feasibility study.

BACKGROUND: Monitoring of IBD patients on intravenous biologic treatment is recommended but time-consuming for patients and nurses. We developed a mobile application (app) to promote self-management and studied its feasibility in clinical practice. METHODS: Adult IBD patients treated with intravenous infliximab or vedolizumab used the app over four biologic treatments. The app includes information modules and an interactive timeline with notifications of blood tests and health checks before treatment. RESULTS: In total, 55 patients participated of whom 71% had Crohn's disease and 85% used infliximab. Compliance with health checks and blood tests was 67% before the first biologic treatment and 70, 87, and 80% before the second, third, and fourth treatment, respectively. The median number of times the app was used per treatment varied from 6 to 8 times (≥4 considered sufficient). Patients were satisfied with the app [median VAS score 8 (IQR 7-9)] and remained equally satisfied with IBD care [score 8 (IQR 8-9) before and after app use]. Nurses contacted all patients by telephone before the first biologic treatment, as previous standard care. Before the second, third, and fourth treatment only 47, 35, and 49% of patients were contacted. The majority (92%) wanted to continue using the app after the study. CONCLUSIONS: Monitoring of IBD patients treated with intravenous biologics using an app is feasible. We saw high compliance, sufficient app use, and high patient satisfaction. Moreover, health-care utilization was reduced and almost all patients preferred using the app over previous standard care (ClinicalTrials.gov NCT04254614).

Improvement of Fatigue and Quality of Life in Patients with Quiescent Inflammatory Bowel Disease Following a Personalized Exercise Program.

BACKGROUND AND AIMS: Fatigue significantly impacts the quality of life of patients with inflammatory bowel disease (IBD). This study aimed to assess the effect of a personalized, intensive exercise program on fatigue, health-related quality of life (HRQoL), and cardiorespiratory fitness in patients with quiescent IBD and severe fatigue. METHODS: A pilot study was performed including IBD patients in remission with severe fatigue. The 12-week exercise program consisted of three times per week 1-h sessions, including aerobic- and progressive-resistance training at personalized intensity based on a cardiopulmonary exercise test (CPET) and one-repetition maximum. CPET was repeated after 12 weeks. Fatigue and HRQoL were assessed using the checklist individual strength and 32-item IBD questionnaire. RESULTS: Twenty-five IBD patients with mean age of 45 (± 2.6) years were included of which 22 (88%) completed the exercise program. Fatigue significantly improved from 105 (± 17) points on the checklist individual strength before, to 66 (± 20) after completion of exercise program (p < 0.001). Patients' HRQoL significantly improved from 156 (± 21) to 176 (± 19) (p < 0.001). When looking at the subdomains of HRQoL, significant improvement was seen in emotional (58 ± 12 vs. 69 ± 9.1, p = 0.003), systemic (19 ± 3.9 vs. 24 ± 4.7, p < 0.001), and social function (25 ± 5.4 vs. 30 ± 3.9, p < 0.001). Bowel symptoms did not change (53 ± 7.7 vs. 55 ± 7.3, p = 0.208). Repeat CPET showed a significant improvement in maximum power patients were able to deliver (2.4 ± 0.5 vs. 2.7 ± 0.5 W/kg, p = 0.002). CONCLUSIONS: A personalized, intensive exercise program can lead to significant improvement of fatigue, HRQoL, and cardiorespiratory fitness in patients with quiescent IBD and severe fatigue.