Design and acceptance of Rheumates@Work, a combined internet-based and in person instruction model, an interactive, educational, and cognitive behavioral program for children with juvenile idiopathic arthritis

Abstract

BackgroundJuvenile idiopathic arthritis (JIA) is a chronic rheumatic disease. Patients suffer daily discomforts such as pain, fatigue, stiffness, and mood disturbances. Their exercise capacity is decreased to a variable degree and physical activity levels may be impaired. To prevent long-term cardiovascular risks associated with JIA and medication, it is important to encourage physical activity. To achieve this we developed Rheumates@Work (R@W), a combined internet-based and in person instruction model, an interactive, educational, and cognitive behavioral program. The aim of this study is twofold: to describe the theoretical background and design of R@W based on Pender’s Health Promotion Model, and to assess its acceptance.MethodsWe enrolled 8 to 13-year-old JIA patients, from 3 outpatients clinics in The Netherlands, in R@W. Inclusion criteria were a low disease activity (VAS physician <20 mm), comprehension of the Dutch language and absence of relevant co-morbidity. We assessed acceptance by measuring the participants’ commitment to the program, the level of interaction on patient’s initiative (f.e. mails send by the patient), technical aspects and satisfaction. Commitment was defined as the percentage of participants that completed the assignments and how much encouragement the participants needed for this. Satisfaction was measured with an anonymous questionnaire concerning f.e. time investment and perceived benefits. Costs were monitored.ResultsOf the 64 patients we enrolled, 23 boys and 41 girls, 93.8 % completed the program. Participant-initiated interaction was seen in 10.7 %, 24.7 % send a mail because of technical problems. Eighty-two percent of the participants and 99 % of the parents liked the program, and 85 % of the participants indicated that they had learnt something, or quite a lot. Development costs of the program were low.ConclusionThe HPM is suitable for a behavioral intervention program such as R@W. Acceptance and satisfaction of R@W were high and the costs of the program were low.Trial registrationTrial Number: ISRCTN92733069Electronic supplementary materialThe online version of this article (doi:10.1186/s12969-015-0029-5) contains supplementary material, which is available to authorized users.

Internet Program for Physical Activity and Exercise Capacity in Children With Juvenile Idiopathic Arthritis: A Multicenter Randomized Controlled Trial

“…The children had to set themselves an attainable goal based on their current physical activity, as recorded in an activity diary, and by their exercise capacity. All elements were based on Pender's health promotion model and were provided through cartoons, puzzles, and brain teasers, supplemented with 4 group sessions . At the time of finishing the intervention (T1), the results of the physical activity and exercise capacity were discussed with the participants in an effort‐affirming way.…”

Fatigue in patients with Juvenile Idiopathic Arthritis: relationship to perceived health, physical health, self-efficacy, and participation

“…The current study includes JIA patients, age 8–13, who participated in an intervention study to improve physical activity (PA), called Rheumates@work (R@W Trial number ISRCTN92733069) [25]. Patients were recruited, between January 2011 and September 2012, from three pediatric rheumatology departments in the Netherlands: Beatrix Children’s Hospital of the University Medical Center Groningen; Wilhelmina Children’s Hospital of the University Medical Center Utrecht; and the Reade Center for Rehabilitation and Rheumatology in Amsterdam.…”

Supporting health-related parenting: A scoping review of programs assisted by the Internet and related technologies

“…Promoting parental motivation to implement a healthier lifestyle for their children, to change specific health behaviors, to increase adherence to preventive or treatment measures, and promoting parental self-efficacy are explicit key dimensions in most of these programs (e.g. Armbrust et al, 2015;Chen, Weiss, Heyman, Cooper, & Lustig, 2011;Merkel & Wright, 2012).…”