A pilot randomized control trial to evaluate the feasibility of an Internet-based self-management and transitional care program for youth with haemophilia

• Published in: Haemophilia : the official journal of the World Federation of Hemophilia Vol. 20; no. 6; pp. 784 - 793
• Main Authors: Breakey, V. R., Ignas, D. M., Warias, A. V., White, M., Blanchette, V. S., Stinson, J. N.
• Format: Journal Article
• Language: English
• Published: England Blackwell Publishing Ltd 01.11.2014
• Subjects: Adolescent; adolescents; Age Factors; education; Female; haemophilia; Health Knowledge, Attitudes, Practice; Hemophilia A - therapy; Hemophilia B - therapy; Humans; Internet; Male; Outcome Assessment (Health Care); Pilot Projects; Self Care; Self-Evaluation Programs; self-management; Surveys and Questionnaires; transition; haemophilia; education; Internet; adolescents; self-management; transition
• ISSN: 1351-8216; 1365-2516
• DOI: 10.1111/hae.12488

Summary Adolescents with haemophilia must assume responsibility for their health and management of their disease. An online self‐management program was developed to support adolescents during this transition. To determine the feasibility of the program using a randomized control trial (RCT) design in terms of accrual/attrition rates, willingness to be randomized, compliance with the program/outcome measures and satisfaction. Adolescents, ages 13–18, were enrolled in a pilot RCT (NCT01477437) and randomized to either the intervention (8‐week program with telephone coaching) or the control arm (no access to the website, weekly telephone call as attention‐strategy). All participants completed pre/postoutcome measures. Twenty‐nine teens participated (intervention n = 16, control n = 13). Participants in the intervention arm spent an average of 50 min on the website per week and completed the modules in an average of 14 weeks (SD = 4.9). Attrition was higher in the control group compared to the intervention group (54% vs. 25%). 17/18 (94%) who completed the program also completed the poststudy measures. Teens on the intervention arm showed significant improvement in disease‐specific knowledge (P = 0.004), self‐efficacy (P = 0.007) and transition preparedness (P = 0.046). There was a statistically significant improvement in knowledge in the intervention group when compared to the control group (P = 0.01). Overall, the teens found the website to be informative, comprehensive and easy to use and were satisfied with the program. This pilot RCT study suggests benefit to the program and indicates an RCT design to be feasible with minor adjustments to the protocol.