Four literature reviews revealed the evidence in support of non-pharmacological interventions is accumulating.
4 Literature Reviews
Dr. Poole has studied the needs of patients with scleroderma, as well as the non-pharmacological interventions developed to help this patient population. To date, four literature reviews have been conducted on interventions for scleroderma. The first review, performed in 1995, concluded adjunctive therapies, such as physical and occupational therapy, although not well studied, may be helpful in preventing secondary disability.1
The second review, in 1997, included six intervention studies and noted that no control trials had been performed in rehabilitation.2
The 2010 review summarized 14 studies and four randomized, controlled trials on musculoskeletal interventions. Although the studies were small, they suggested exercise and physical activity could be beneficial.3
The 2015 review included 23 studies, nine randomized, controlled trials and four controlled clinical trials.4 Again, although exercise appeared beneficial, the strength of the evidence was limited by the great variety of the interventions. Taken together, however, the four literature reviews revealed the evidence in support of non-pharmacological interventions is accumulating.
A closer examination of the currently available evidence for non-pharmacological interventions for scleroderma suggests it is fairly strong. Dr. Poole noted scleroderma is a rare disease, so it is noteworthy that many of these studies had 20–30 patients per arm. The 2015 review article, which she co-authored, identified four studies that fell under the category of comprehensive multidisciplinary programs.4 These included land- and water-based programs; home programs; general stretching exercises for the arms, legs, face and mouth; and strengthening exercises for the arms and legs. The review found these multidisciplinary programs were associated with improvements in quality of life and functional ability.
Unfortunately, the improvements were generally not maintained after follow-up, which typically occurred six months to a year after termination of the official program. “What happens a lot of time with exercises is that people don’t continue to do them,” explained Dr. Poole.
Using Patient Needs to Guide Treatment
Dr. Poole emphasized the importance of using evidence and patient needs to guide treatment. She encouraged healthcare providers to become aware of and point patients to credible resources and tools. In particular, she highlighted the Taking Charge of Systemic Sclerosis (TOSS) internet self-management program. TOSS, developed with input from people with scleroderma, consists of educational modules, resources and videos on such topics as scleroderma, organ involvement, exercises, coping with and managing pain, fatigue, ulcers, activities of daily living and tips for caregivers. Dr. Poole also directed the audience to other resources, such as the Scleroderma Foundation, the Scleroderma Research Foundation and the Scleroderma Patient-centered Intervention Network (SPIN).
