ABSTRACT
Objective: To identify and compare treatment goals between IBD patients and partners, and how these change upon receiving information. Methods: During a patient information day a self-made survey was distributed before and after a lecture about a physicians' view on treatments goals. Patients and partners were asked for their preferred treatment goals at 6 weeks and at 6 months and could choose between short-term goals (symptom free, improved functioning, better QOL, normal colonoscopy) and long-term goals (prevention of surgery, complications, flares and no steroids). Results: Being "symptom-free" (55.9%) was the preferred goal. Patients with higher disease activity chose more short-term goals (p=0.03) at 6 weeks. Age, gender and education did not affect treatment goals. Partners chose more short-term goals (p=0.03) at 6 weeks. Post-lecture, answers shifter to normal colonoscopy (4.2% versus 18.0%, p=0.001), and a better QOL (21.2% vs 33.3%, p=0.039) as goal at 6-months. Conclusions: Patients' 6-week treatment goals focused on being symptom-free and having a high QOL, especially those patients with high disease activity. Partners chose more short-term goals than patients at 6 weeks. Innovation: General health information can be applied and translated into treatment goals. This may assist in remote shared goal setting and decision making.
Subject(s)
Colitis, Ulcerative/complications , Colitis, Ulcerative/nursing , Crohn Disease/complications , Crohn Disease/nursing , Nurse's Role , Colitis, Ulcerative/diagnosis , Colitis, Ulcerative/therapy , Communication , Consensus , Crohn Disease/diagnosis , Crohn Disease/therapy , Humans , Patient Advocacy/standards , Patient Education as Topic/organization & administration , Patient Education as Topic/standards , Telemedicine/organization & administration , Telemedicine/standardsABSTRACT
BACKGROUND: Tight control of disease activity, medication side effects, and adherence are crucial to prevent disease complications and improve quality of life in patients with inflammatory bowel disease (IBD). The chronic nature and increasing incidence of IBD demand health care innovations to guarantee future high-quality care. Previous research proved that integrated care by telemedicine can improve outcomes of chronic diseases. Currently available IBD telemedicine tools focus on specific patient subgroups. Therefore, we aimed to (1) develop a telemedicine system suitable for all patients with IBD in everyday practice and (2) to test this system's feasibility. METHODS: With a structured iterative process between patients, dietitians, IBD nurse-specialists, and gastroenterologists, myIBDcoach was developed. During 3 months, myIBDcoach's feasibility was tested by 30 consecutive outpatients with IBD of 3 hospitals. Thereafter, patients and health care providers completed a questionnaire covering satisfaction, accessibility, and experiences with myIBDcoach. RESULTS: MyIBDcoach enables continuous home-monitoring of patients with IBD and optimizes disease knowledge and communication between patients and health care providers. Besides disease activity, medication adherence, and side effects, myIBDcoach monitors malnutrition, smoking, quality of life, fatigue, life-events, work participation, stress, and anxiety and depression and provides e-learnings for patient empowerment. Patients graded the system with a mean of 7.8 of 10, and 93% would recommend myIBDcoach to other patients. CONCLUSIONS: We developed myIBDcoach, which enables integrated care for all patients with IBD, regardless of disease severity or medication use. The feasibility study showed high satisfaction and compliance of patients and health care providers. To study myIBDcoach's efficacy, a multicenter randomized controlled trial has been initiated.
Subject(s)
Inflammatory Bowel Diseases/psychology , Mentoring/methods , Mobile Applications , Self Care/psychology , Telemedicine/methods , Adult , Chronic Disease , Communication , Feasibility Studies , Female , Humans , Inflammatory Bowel Diseases/therapy , Male , Medication Adherence , Middle Aged , Patient Satisfaction , Professional-Patient Relations , Program Evaluation , Quality of Life , Self Care/methodsABSTRACT
BACKGROUND: It is important to identify factors that can reduce the incidence of immunogenicity against anti-tumor necrosis factor medication in patients with inflammatory bowel disease. The objective of our study was to evaluate the influence of cotreatment with immune modulators (IMs) on trough levels (TLs) and antidrug antibodies. METHODS: The records of all patients with inflammatory bowel disease at the Leiden University Medical Center who received either adalimumab or infliximab (IFX) in the year 2011 and/or 2012 (n = 352) were retrospectively evaluated about the assessment of TL and antibodies and use of IM. RESULTS: Two hundred seventeen patients were included (108 patients IFX; 109 patients adalimumab). Mean TL in the IFX group was higher in the combination therapy group compared with the monotherapy group, 4.6 versus 7.5 µg/mL, P = 0.04. In the adalimumab group, the difference was not significant. In patients with IFX monotherapy, the incidence of antibody formation was higher compared with patients with combination therapy (29.8% versus 5.7%, P = 0.001). IFX patients with a suboptimal dose of IM had a higher TL compared with patients who had an optimal dose, P = 0.02. The incidence of antibody formation was lower in IFX patients who immediately started with IMs compared with patients who did not (33.3% versus 66.7%, P = 0.04). CONCLUSIONS: The influence of combination therapy with IM on TL and antibodies to anti-tumor necrosis factor medication was significant for IFX-treated patients. Patients who started combination therapy immediately developed antibodies less often than patients who started later with concomitant medication.
