Juvenile and adult patients benefit from digital tools
by John Gever, Managing Editor, MedPage Today  November 10, 2017

SAN DIEGO — Two studies presented here at the American College of Rheumatology’s annual meeting showed that online technologies were able to improve self-management in patients with juvenile idiopathic arthritis (JIA) and rheumatoid arthritis.
For JIA, teens randomized to an Internet-based program providing disease information and social support over 3 months showed significantly better health-related quality of life as well as trends toward improved outcomes by other measures, as compared with a control group receiving education only.
Separately, adult RA patients participating in a digital and telephone-based health coaching program developed by a private company showed improvements from baseline in a variety of health behaviors, including sleep, alcohol and tobacco use, and physical activity.
Speaking at an ACR press briefing, the researchers said these techniques hold significant promise for helping patients cope with their disease without extensive (and expensive) in-person visits with physicians.
JIA Intervention
Teens with chronic diseases such as JIA are an especially challenging population, said Jennifer Stinson, RN-EC, PhD, of Toronto’s Hospital for Sick Children. As adolescents they expect, and are expected by others, to begin taking an active part in their disease management, yet typically aren’t fully able to process informational materials and self-management methods developed for adults.
Stinson noted, for example, that one study had shown that typical parent-directed handouts for JIA were written at a New York Times level of sophistication.
And when the disease verges on rare, as is the case with JIA, most teens don’t know anyone else with the disease and thus have little peer support.
In recognition of these problems, Stinson and colleagues have spent about a decade developing self-management techniques and materials geared specifically toward adolescents. In a presentation here, she reported results of a randomized trial testing what they have come up with so far, an interactive online program called “Teens Taking Charge” (TTC).
That intervention consists of teen-centric educational information about JIA, skills for mitigating symptoms and compensating for disabilities, and a social support platform connecting patients to adult professionals and to each other. (Stinson’s group has posted a YouTube video illustrating the program.)
In the trial, 169 JIA patients age 12-18 were assigned to participate in the TTC program, which also included monthly “coach” calls, goal-setting sessions, and parent modules as well as skills and disease-education components. Another 164 were enrolled in a control program that included only the monthly coach calls, parent modules, and static web-based disease education.
Stinson didn’t report quantitative results, but said the TTC program was associated with statistically significant improvement in health-related quality of life related to treatment problems and in pain interference with enjoyment of daily life. There was also a non-significant trend toward improved self-efficacy.
Improvements in pain coping, disease knowledge, and overall health-related quality of life were seen equally in both groups, Stinson said. There was no important change in either group in treatment adherence, anxiety, or depression, but that was because treatment adherence was relatively high to begin with and because psychiatric complaints were uncommon, she said.
One of the major benefits reported by TTC participants in post-study interviews was simply learning that they were not alone and that one could cope successfully with JIA. The digital social support platform, however, did not work as well as the researchers had hoped; participants said it was too unlike the social media platforms they were accustomed to using and found it boring.
The TTC program is now being integrated into a separate peer support program developed at the Hospital for Sick Children. A U.S. version of TTC, funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases is scheduled to launch in January 2018, she said.
Health Coaching in Adult RA
Teens aren’t the only group that may need more help in self-management than can be delivered effectively during clinic visits, said Uma Srivastava, MS, of Pack Health, a private firm in Birmingham, Alabama. Pack Health has developed some 20 online programs for a range of chronic illnesses including type 2 diabetes, cardiovascular conditions, cancer, pulmonary diseases, and rheumatological disorders including rheumatoid arthritis.
At the ACR meeting, Srivastava presented results of an open-label study of 155 patients participating in a 12-week RA program. Like the others, it adapts to the individual patient’s needs and wants, she explained. Patients lay out their goals and the Pack Health program provides a “game plan” for achieving them through lifestyle changes, all conducted online.
Like the RA program, it also included pairing each patient with a trained layperson serving as a “health coach” who spoke with the patient weekly by telephone. During those conversations, the patient-coach pair discussed goals, progress, and barriers. The coach also helped the patient in coordinating care and services.
Patients completed surveys based on the PROMIS Global-10 instrument for assessing physical and mental health. PROMIS scores are normalized such that 50 represents the average for the general U.S. population. In the current study, patients were scored before and after completing the 12-week program. Disease flares and medication adherence were also evaluated.
Mean numerical results were as follows:
• Physical health: 33.6 at baseline versus 40.6 at completion (P<0.001)
• Mental health: 41.4 at baseline versus 47.6 at completion (P<0.001)
• Flares in previous month: 6.6 at baseline versus 3.3 at completion (P<0.001)
• Drug doses missed per week: 0.4 at baseline versus 0.2 at completion (P=0.01)
Participants also lost a mean 0.55 BMI points during the program (P<0.001), Srivastava reported.
Pack Health’s programs cost $30 per month plus $99 at signup, although the company says that employers and insurers may pay some or all of the costs.
Limitations to the study included its open-label design with voluntary participation — the sample may have represented patients already motivated to improve their health behaviors — and it couldn’t be determined whether certain aspects of the program contributed more than others to the results.

The adult health coaching study was supported by Pack Health, a for-profit developer of similar programs for a range of conditions, and several investigators were Pack Health employees. The JIA study had no commercial funding and investigators declared they had no relevant financial interests.
• Primary Source
American College of Rheumatology
Source Reference: Stinson J, et al “A Randomized Controlled Trial (RCT) of an Internet-Based Self-Management Program for Adolescents with Juvenile Idiopathic Arthritis (JIA)” ACR 2017; Abstract 2952.
• Secondary Source
American College of Rheumatology
Source Reference: Burton BS, et al “Assessing the Impact of a Digital Health Coaching Program for Patients with Rheumatoid Arthritis” ACR 2017; Abstract 2257.