E-health: Web-guided therapy and disease self-management in ulcerative colitis. Impact on disease outcome, quality of life and compliance

Abstract

Ulcerative Colitis (UC) together with Crohn's disease (CD) belongs to inflammatory bowel diseases (IBD). IBD is to date as frequent as Insulin Dependent Diabetes (IDDM) and is second to Rheumatoid Arthritis (RA) in its chronicity. The majority (91%) of patients with UC have a mild to moderate disease course eligible for 5-ASA treatment. Poor adherence in UC is a well known phenomenon, which is associated with a 5-fold increased risk of relapse and increased health care costs. Web-based treatment solution with self-initiated 5-ASA treatment in UC based on the patient's pattern recognition of the disease course had not been published previously. The aims of the thesis were: 1) In a European evidence based consensus to assess the IBD patients' need for Quality of Health Care (QoHC); 2) To validate the influence of a Patient Educational Center (PEC) and a web-based treatment solution program, www.constant-care.dk, on patients' disease self-management, adherence, Quality of Life, and disease course after 1 year of self-initiated 5-ASA treatment. UC patients in a conventional out-patient setting were used as controls; 3) To validate two new quantitative rapid tests (RT scanning and HT photo) for Faecal Calprotectin (FC) measurement, and to assess whether HT photo can be useful as a home test to help the patients deciding on self-initiated treatment. The ECCO Consensus found evidence for optimising QoHC by "information"; "education", "benchmarking", and "psychological analysis", which could help to improve patient compliance, QoL, and to decrease depression and anxiety. UC patients, educated in the PEC, significantly improved the level of disease specific knowledge. Patient education and training on www.constant-care.dk, being validated on first 21 Danish patients and subsequently on 233 Danish and 100 Irish patients, showed that the new web guided approach was feasible, safe, and cost effective for the selected group of the patients included in the trial. Use of the web concept increased patients adherence to acute 5-ASA treatment, (p = 0.005) and community effectiveness up to 33%, improved Quality of Life, (p = 0.004), increased patients' ability to sufficient self-initiated treatment and reduce out-patient visits, (p < 0.0001). Patients' morbidity and depression remained unchanged. Median duration of relapse in the web-group was 59 days shorter than in the control-group possibly due to high dose of systemic 5-ASA treatment, (p < 0.0001). We found that the new rapid home test (HT photo) was accurate and comparable with the Enzyme-Linked Immunosorbent Assay (ELISA) with a 90% specificity and a 96% sensitivity. The rapid test can be useful in clinical settings concerning disease self-monitoring at home, which would decrease the use of endoscopy in some cases. The findings corresponded well with action plan for a European e-Health Area and could be a helpful tool to provide more efficient health care for UC patients. Widespread implementation of the "Constant-Care" is possible, but it may require a reshaping of the current health care for IBD patients both legally and economically. It may also empower patients in disease self-management and reduce dependency on doctors. Future long-term studies are needed to investigate, if this concept could possibly change the natural disease course.