Internet Enhanced Self Management
Small group self- management programs have been demonstrated to be effective in improving arthritis-related pain and disability by educating and training patients as to how best to modify certain health-related behaviors. These programs have been so successful in fact, that both the American College of Rheumatology and the Centers for Disease Control and Prevention have advocated for increased use of such programs in the standard of care for arthritis. However, for some individuals, such programs may not be available due to location or other circumstances, or they may not be a viable option due to limited mobility or unwillingness on the individual’s part to participate. As an alternative, some researchers have begun to evaluate the effectiveness of online self-care management systems to replicate the small group treatment approaches that have proven to be so successful.
With over 70% of the U.S. population utilizing the Internet on a regular basis, and upwards of 90 million individuals using the Internet to search for health-related information, this is a logical and feasible approach to deliver self-care management program information for not only arthritis sufferers, but individuals with other diseases and conditions as well (Lorig et al. 2008).
A 2008 randomized trial (considered the “gold standard” for research study designs) was conducted by Lorig and colleagues in order to determine the effectiveness of an Internet-based self-management program. Although primarily focused on arthritis patients, individuals with rheumatoid arthritis or fibromyalgia were also recruited and allowed to participate. Subject recruitment occurred over an 18 month period via online advertisements on web sites, online newsletters, and discussion boards. A total of 855 individuals were randomized to receive either usual care or to the online self-management program. Each subject, regardless of group, completed a series of questionnaires designed to measure six health indicators (health distress, self-reported global health, disability, activity limitation, fatigue, and pain), four health behaviors (aerobic exercise, stretching and strength, communication with physician, and stress management practices), as well as self-efficacy and health care utilization (physician visits, emergency visits, days in hospital, chiropractic visits, and physical therapist visits). Those randomized to usual care received a $10 gift card for each questionnaire they completed.
The online self-management program was contained on a password-protected website and consisted of the following components: web-based instruction (via The Learning Center); web-based bulletin board discussion (via The Discussion Center); various individual tools, including exercise logs, medication diaries, and tailored exercise plans (via My Tools); and access to all of the intervention program reference content (via The Arthritis Helpbook). The goal of the Learning Center was to improve self-efficacy by providing education related to symptom management, physician-patient communication, diet and exercise, fatigue management, and problem solving, among others. While content delivery was pre-programmed, the online workshops were assisted by the presence of two peer moderators who facilitated discussions and monitored program participation. The intervention lasted six weeks, and participants were asked to log in a minimum of three times for a total of one to two hours and participate in all weekly activities. The weekly activities included reading the new Learning Center content posted each week, posting an action plan on the bulletin boards for discussion, and participating in various self-administered tests. Email reminders were sent to encourage participation.
Of the 855 who were initially enrolled, 570 completed questionnaires at all three time points of measurement for the study (enrollment, six months after intervention, and one year after intervention). Of the participants, 63.9% had osteoarthritis, 27.8% had rheumatoid arthritis, and 51.6% had fibromyalgia. On average, the participants in both groups were comparable in age (low 50s, range 22-89 years), predominantly female (90%), and predominantly of non-Hispanic white race.
The study found that those in the online self-management program had significant improvements in health distress, activity limitation, self-reported global health, and pain at both six months and one year following completion of the intervention. In addition, self-efficacy also showed significant improvement in those in the intervention group, but not in the usual care group. Furthermore, those in the usual care group had a tendency to remain the same or have their symptoms worsen slightly over the first six months of the study. With regard to diagnosis, those with a diagnosis of rheumatoid arthritis or osteoarthritis responded better to the intervention than did those with fibromyalgia. This could be because many of the fibromyalgia patients simply did not have very severe symptoms to begin with, which would preclude much room for improvement and ultimately influence the ability of the program to show an effect for fibromyalgia patients. Additionally, the intervention was modeled after a program specifically designed to address arthritis. Although arthritis and fibromyalgia share a number of overlapping symptoms, they are clinically separate diagnoses that are managed in different ways.
The Lorig et al. study results show that there are considerable benefits to be realized from an online self-management care program. Furthermore, additional research has shown promise for the use of such programs in the self-management of fibromyalgia. A 2010 randomized controlled trial by Williams et al. randomly assigned 118 fibromyalgia patients to either usual care or usual care plus access to an Internet-enhanced behavioral self-management program rooted in both cognitive and behavioral pain management strategies. The corresponding website contained 13 educational modules divided among three groups: 1) background knowledge regarding fibromyalgia as a disease; 2) education, behavioral, and cognitive skills to promote lifestyle changes for managing fibromyalgia; and 3) behavioral and cognitive skills to assist with symptom management in fibromyalgia. Each module included a video lecture with written summary, homework, and self-monitoring forms. Patients randomized to the intervention arm were encouraged to use the website as much as needed within the six month time frame of the study; no additional coaching was given to encourage participation.
At the start of the study, both intervention and usual care participants were asked to complete a series of questionnaires to assess physical function status and pain severity, as well as fatigue, sleep, anxiety, and depression. At the completion of the study, the researchers found that those who utilized the Internet-based self-management program experienced significant improvements in pain intensity and physical function; however, measures of sleep, fatigue, and mood did not show any significant differences between the two groups. Nevertheless, the findings of this study demonstrate that Internet-based self-management program can be effective to improve pain and physical function in fibromyalgia patients.
Unlike the systems utilized in the study by Lorig et al., which were originally designed for use exclusively in arthritis patients, FibroTrack has been designed from the ground up for the management of fibromyalgia. FibroTrack provides an integrated approach to the management of fibromyalgia, by offering a number of research-backed capabilities, including emotional state education, symptom tracking software, treatment program validation, and social support groups.