An internet-based self-management program with telephone support for adolescents with arthritis: a pilot randomized controlled trial.

Child Health Evaluative Sciences, Chronic Pain Program, Department of Anesthesia and Pain Medicine, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada.
The Journal of Rheumatology (Impact Factor: 3.17). 09/2010; 37(9):1944-52. DOI: 10.3899/jrheum.091327
Source: PubMed

ABSTRACT To determine the feasibility of a 12-week Internet-based self-management program of disease-specific information, self-management strategies, and social support with telephone support for youth with juvenile idiopathic arthritis (JIA) and their parents, aimed at reducing physical and emotional symptoms and improving health-related quality of life (HRQOL).
A nonblind pilot randomized controlled trial (NCT01011179) was conducted to test the feasibility of the "Teens Taking Charge: Managing Arthritis Online" Internet intervention across 4 tertiary-level centers in Canada. Participants were 46 adolescents with JIA, ages 12 to 18 years, and 1 parent for each participant, who were randomized to the control arm (n = 24) or the Internet intervention (n = 22).
The 2 groups were comparable on demographic and disease-related variables and treatment expectation at baseline. Attrition rates were 18.1% and 20.8%, respectively, from experimental and control groups. Ninety-one percent of participants randomized to the experimental group completed all 12 online modules and weekly phone calls with a coach in an average of 14.7 weeks (SD 2.1). The control group completed 90% of weekly attention-control phone calls. The Internet treatment was rated as acceptable by all youth and their parents. In posttreatment the experimental group had significantly higher knowledge (p < 0.001, effect size 1.32) and lower average weekly pain intensity (p = 0.03, effect size 0.78). There were no significant group differences in HRQOL, self-efficacy, adherence, and stress posttreatment.
Findings support the feasibility (acceptability, compliance, and user satisfaction) and initial efficacy of Internet delivery of a self-management program for improving disease-specific knowledge and reducing pain in youth with JIA.

1 Bookmark
  • [Show abstract] [Hide abstract]
    ABSTRACT: 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 [1] accrual/attrition rates, [2] willingness to be randomized, [3] compliance with the program/outcome measures and [4] 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.
    Haemophilia 10/2014; · 2.47 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Thousands of children undergo surgery each year, and a shift toward same-day surgeries and decreased lengths of hospital stay results in parents being increasingly responsible for their child's postoperative care. Recent studies have tested interventions designed to improve parent management of their children's postoperative pain at home, but progress in this area has been limited by a lack of synthesis of these findings.
    07/2014; 19(4):e115-e123.
  • [Show abstract] [Hide abstract]
    ABSTRACT: Background Juvenile idiopathic arthritis (JIA) is one of the most common diseases of childhood causing pain, swelling of joints and reduced mobility. Previous research has focused on the challenges and psychosocial impact of JIA, but there has been limited attention given to how young people adjust and adapt to living with a long-term condition such as JIA. The aim of this qualitative study was therefore to explore adolescents' experiences of living with JIA, with particular focus on the process of adjustment.Methods Ten adolescents (7 female, 3 male) aged 13–17 years with good treatment adherence were recruited from an adolescent arthritis clinic. In-depth interviews were conducted, and data were analysed by two researchers independently using interpretative phenomenological analysis.ResultsThese adolescents described the physical and psychosocial ‘burden of living with JIA’ and the challenges faced by an underlying preoccupation ‘to be a normal teenager’. However, their accounts also revealed ways in which they regained agency and developed ‘resilience through taking control’ over their lives. This resilience helped the adolescents re-establish a sense of well-being through an ongoing process of ‘acceptance and self-growth’.Conclusions Although much research has adopted a deficit model that focuses on adjustment problems, the current study highlights the resourcefulness of young people in managing the challenges of living with a long-term condition. These experiences of successful adjustment can be used as the basis of positive, strength-based intervention approaches for adolescents with arthritis to enhance resilience and well-being.
    Child Care Health and Development 11/2014; · 1.70 Impact Factor