DESTIN, FLA. – Arthritis self-management programs can ease the transition from pediatric to adult care for many adolescents with juvenile idiopathic arthritis, according to Dr. Brian Feldman.

Not only are adolescent patients coping with rapid physical growth and pubertal changes that can have detrimental effects in patients with chronic conditions, they also are developing a personal identity and seeking independence. As a result, adolescence is a time when parental influence can disintegrate, risk-taking behaviors may increase – and medication adherence may go by the wayside, he said at the Congress of Clinical Rheumatology.

A meta-analysis involving 569 studies of adults and children with various chronic conditions showed that on average, medication adherence was 75%, but a closer look at the pediatric population shows that adherence declines substantially during the teenage years, said Dr. Feldman, professor of pediatrics and medicine at the University of Toronto, and head of the division of rheumatology at the Hospital for Sick Children, also in Toronto.

In another study of 40 juvenile arthritis patients started on NSAID treatment, only 60% took their medications as prescribed.

These issues are not new, but they have garnered increasing attention in the past decade, beginning with a 2002 consensus statement on health care transitions for young adults with special health care needs (Pediatrics 2002;110[Suppl. 3]:1304-6). The statement, developed by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians–American Society of Internal Medicine stresses the importance of the transition process, and characterizes it as a dynamic lifelong process with a goal of maximizing lifelong functioning and potential through high-quality, uninterrupted, developmentally-appropriate health care services.

The transition, according to the statement, should be patient centered, flexible, responsive, and comprehensive, and should involve a coordinated effort by all parties.

This requires considering the developmental stage of the child and the family and developing a three-way partnership between the pediatric health care provider, the adult health care provider, and the child and family, Dr. Feldman said.

"We need to provide support not just to the child, but also to the family through the transition process. It’s very important as the children start to grow that we take advantage of this burgeoning autonomy and give them skills for self-management; that we coordinate our adult and pediatric services so that the transition is smooth; and that we plan for an active transfer of care. Arthritis self-management is an important aspect of this process," he said.

Arthritis self-management programs have been around for a long time, and studies consistently demonstrate that they can be of benefit for adolescents and young adults, particularly with respect to improving medication adherence.

The Canadian Arthritis Society and the Arthritis Foundation are among organizations that have long offered self management programs. A new Internet-based program, webSMART, currently in development through the Childhood Arthritis & Rheumatology Research Alliance also is showing promise.

The program, which promotes coping skills training for English-, French-, and Spanish-speaking adolescents with juvenile idiopathic arthritis, currently is being evaluated in a large, randomized, controlled, trial across North America.

The website has a "funky" design to appeal to the adolescents, and covers subjects such as nonmedical therapies, stress management, relaxation, arthritis medications, self-monitoring, and looking ahead. Each page includes videos, tips and interactive features, Dr. Feldman said.

In a pilot study, 24 teens were randomized to a group that was exposed to the program, and 22 were randomized to a control group who received a phone call each week from a counselor who would answer questions the teen had about his or her care.

Pain intensity declined significantly in the experimental group, but increased or remained the same in the control group. The difference between the groups was statistically significant, and the effect size was moderate, Dr. Feldman said.

Furthermore, knowledge about disease management increased significantly in the experimental group, compared with the control group, and this effect size was large, he noted.

"So our website was able to change not just knowledge, but also symptoms," he said, noting that while the program is "not ready for prime time," it is expected to be made available to the public once the randomized trial is complete.

Self-management programs can be ideal for many adolescents, including those who live in rural areas without easy access to rheumatologists, because they provide a unique strategy that makes the most of the unique characteristics of this population, Dr. Feldman said.

"Self management is important, and because of the unique issues we deal with in the pediatric population, we should be considering Internet strategies," he concluded.

Dr. Feldman is a member of the data safety monitoring board for Novartis and Bristol-Myers Squibb. He has received research grant support from Baxter and Bayer.

*Correction, 6/18/2013: An earlier version of this story did not include a photo of Dr. Brian Feldman of Ontario, Canada.

Self-management programs benefit adolescent arthritis patients