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.
"+ + Guendelman et al. (2002) +/= b = Holden et al. (2000) + Homer et al. (2000) + = = Horan et al. (1990) = = Huss et al. (2003) = = NR Iafusco et al. (2011) + Jan et al. (2007) = = Johnson et al. (2001) - + Jones et al. (2010) = +/= c = Joshi et al. (2009) + Krishna et al. (2003) + = + = McPherson et al. (2006) + + = + Mosnaim et al. (2008) + Mulvaney et al. (2010) + Palermo et al. (2009) + Rubin et al. (1986) + + = = Shegog et al. (2001) = + Stinson et al. (2010) + = = Whittemore et al. (2010) "
[Show abstract][Hide abstract] ABSTRACT: Advances in technology have offered health professionals alternative mediums of providing support to patients with long-term conditions. This critical review evaluated and assessed the benefit of electronic media technologies in supporting children and young people with long-term conditions. Of 664 references identified, 40 met the inclusion criteria. Supportive technology tended to increase disease-related knowledge and improve aspects of psychosocial function. Supportive technology did not improve quality of life, reduce health service use or decrease school absences. The poor methodological quality of current evidence and lack of involvement of users in product development contribute to the uncertainty that supportive technology is beneficial.
"To broaden access to effective cognitive-behavioral treatment in children, CD-ROM and internet-based pain management programs have been developed and tested with children and adolescents with migraine [12-14] and other recurrent or persistent pain conditions [15-17]. In general, these studies have found positive outcomes forreducing pain relative to control conditions and the results are similar to those found in traditional biobehavioral interventions delivered in face-to-face contacts. "
[Show abstract][Hide abstract] ABSTRACT: The purpose of this study was to evaluate the efficacy of a self-guided CD-ROM program ("Headstrong") containing cognitive-behavioral self-management strategies versus an educational CD-ROM program for treating headaches, headache-related disability, and quality of life.
Participants were 35 children ages 7-12 years with migraine recruited from one university medical center and two children's hospital headache clinics. Participants were randomly assigned to complete the Headstrong or educational control CD-ROM program over a 4-week period. Data on headache frequency, duration, and severity, migraine-related disability, and quality of life (QOL) were obtained at baseline, post-intervention, and 3-months post-intervention.
At post-intervention, Headstrong resulted in lower severity (on a 10-point scale) than the control group by child report (5.06 +/- 1.50 SD vs. 6.25 +/- 1.92 SD, p = 0.03, ES = 0.7). At 3-months post-intervention, parents reported less migraine-related disability (on the PedMIDAS) in the Headstrong group compared to the control group (1.36 +/- 2.06 SD vs. 5.18 +/- 6.40 SD; p = 0.04, ES = 0.8). There were no other group differences at post treatment or at 3-months post-intervention.
When compared to an educational control, Headstrong resulted in lower pain severity at post-treatment and less migraine-related disability at 3-months post-intervention, by child and parent report respectively. Headache frequency and quality of life did not change more for Headstrong versus control. Additional research is needed on the Headstrong Program to increase its efficacy and to test it with a larger sample recruited from multiple centers simultaneously.
The Journal of Headache and Pain 02/2014; 15(1):12. DOI:10.1186/1129-2377-15-12 · 2.80 Impact Factor
"In regard to delivery of the program, three involved a trained interventionist [67–69], two were clinician-led [70,71] and one by a program co-ordinator . Two interventions had telephone support for participants [69,71]. "
[Show abstract][Hide abstract] ABSTRACT: Purpose:
Evidence shows that effective self-management behaviors have the potential to improve health outcomes, quality of life, self-efficacy and reduce morbidity, emergency visits and costs of care. A better understanding of self-management interventions (i.e. programs that help with managing symptoms, treatment, physical and psychological consequences) is needed to achieve a positive impact on health because most children with a disability now live well into adulthood.
A systematic review of self-management interventions for school age youth with physical disabilities was undertaken to assess their effectiveness. Comprehensive electronic searches using international web-based reference libraries were conducted for peer-reviewed and gray literature published between 1980 and January 2012. Eligible studies examined the effectiveness of self-management interventions for children and youth between 6 and 18 years of age with congenital or acquired physical disabilities. Studies needed to include a comparison group (e.g. single group pre/post-test design) and at least one quantifiable health-related outcome.
Of the 2184 studies identified, six met the inclusion criteria; two involved youth with spina bifida and four with juvenile arthritis. The majority of the interventions ran several sessions for at least 3 months by a trained interventionist or clinician, had one-to-one sessions and meetings, homework activities and parental involvement. Although outcomes varied between the studies, all of the interventions reported at least one significant improvement in either overall self-management skills or a specific health behavior.
While self-management interventions have the potential to improve health behaviors, there were relatively few rigorously designed studies identified. More studies are needed to document the outcomes of self-management interventions, especially their most effective characteristics for children and youth with physical disabilities. Implications for Rehabilitation There is some evidence to suggest that self-management interventions for children and youth with spina bifida and arthritis can improve self-management behaviors and health outcomes. Parents' involvement should be considered in encouraging self-management behaviors at different stages of their child's development. Much work is needed to explore the longer term implications of self-management interventions for youth with physical disabilities as well as the impact on health care utilization.
Disability and Rehabilitation 04/2013; 36(4). DOI:10.3109/09638288.2013.785605 · 1.99 Impact Factor
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