The online educational site Taking Charge: Managing JIA Online, together with monthly calls from health coaches, can help teenagers with juvenile idiopathic arthritis (JIA) better cope with their disease, according to new research findings.
The data were presented at the 2017 American College of Rheumatology/Association of Rheumatology Health Professionals (ACR/ARHP) Annual Meeting, Nov. 3-8 in San Diego, California. Nearly 3,000 abstracts from health and research professionals around the world were accepted for this international meeting.
Juvenile rheumatic diseases can affect children of any age. These are chronic conditions that require management through regular visits to pediatric rheumatologists.
At a certain age, teens with JIA are usually expected to provide self-care and be more active in the management of their disease. Their involvement in the proper management of the disease can help greatly in preventing a decline in health and an increase of symptoms, as well as in facilitating the transition from pediatric to adult care.
Most young patients do not receive broad education on the self-management of arthritis. There are many reasons for this, including the inability to access services, limited access to trained professionals close to their homes, and therapy costs.
Canadian researchers sought to bypass these obstacles by developing an internet-based intervention program to make it easier for teens with JIA to access help, tools, and information in disease self-management.
“Young people are digital natives, meaning that they are comfortably using technologies such as the internet to access health information resources and it is a mode of social communication for youth,” Jennifer Stinson, RN-EC, PhD, CPNP, one of the study’s co-authors, and assistant professor in child health evaluative sciences at The Hospital for Sick Children (SickKids) in Toronto, Canada, said in a press release.
“Internet-based educational programs are ideally suited to improve the accessibility and acceptability of disease self-management programs for young people with chronic health conditions such as JIA,” Stinson added.
The randomized, controlled trial was performed in 11 pediatric centers in Canada, and lasted three months. More than 300 teens between the ages of 12 to 18 were enrolled. Of those, 109 were boys and 224 were girls. The mean age was 14.5 years.
The study focused on health-related quality of life and pain among JIA patients and also analyzed emotional symptoms, attendance, coping, knowledge, and personal efficacy.
Two groups were formed: an intervention group and a control group. The intervention group had 164 teens who were assigned to review the online tool with 12 modules in disease education and self-management strategies. They finished these modules in an average time of 189.8 days.
In the control group, 169 teens used publicly available standard disease education material online only. They finished this self-study in an average of 123.6 days.
Parents in both groups also received educational modules to inform and encourage their children to become independent and develop disease self-management. In addition, once a month, teenagers in both groups were monitored by health coaches. Health coaches reviewed the modules with the teenagers in the intervention group only.
Completion of outcome measures (such as pain, quality of life, emotional symptoms, and coping) and program fulfillment (such as attendance, knowledge, and personal efficacy ) were performed by all participants at the beginning, upon completion of the study, and at three and six months after the study.
The results showed a significant overall decrease in pain that interfered with enjoying daily life for the teenagers in the intervention group when compared to the control group. Health-related quality of life concerning treatment problems was also improved in the intervention group.
In addition, all teens in the study showed progress over time in pain coping, self-efficacy, disease knowledge, and health-related quality of life, although these results were not statistically significant.
Most of the teenagers were pleased with the monthly contact with their health coaches and reported that such engagement was beneficial. The teens also found the website content, videos, animations, graphics, and relaxation exercises to be helpful.
“Providing credible education about JIA and how to manage it, as well as social support through discussion boards, sharing stories of hope, and health coaching may be key reasons why there were improvements in aspects of health-related quality of life,” Stinson said.
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