How it all began…
Many individuals living with scleroderma face challenges in daily life due to their illness. These can include fatigue, limitations in hand function, or emotional distress. There is currently no cure for scleroderma. Thus, maintaining and improving the quality of life of people living with the disease is an important health care priority. There are obstacles, however, to developing, evaluating, and delivering psychosocial and rehabilitation programs for people living with scleroderma. Few centers around the world treat enough patients with scleroderma to provide psychosocial and rehabilitation interventions designed specifically for them. Furthermore, many patients live far from major treatment centers. Thus, these kinds of interventions are typically not available for people with scleroderma.
Dr. Brett Thombs, a researcher at the Lady Davis Institute for Medical Research of the Jewish General Hospital and McGill University in Montreal put forth a plan to change this. Prior to launching the Scleroderma Patient-centered Intervention Network (SPIN), a series of studies were conducted in collaboration with patients from organizations across Canada (e.g., Scleroderma Societies of Canada and Ontario, Sclérodermie Québec, the Scleroderma Association of British Columbia), the US (US Scleroderma Foundation) and Europe (Federation of European Scleroderma Associations). This has helped to better understand important problems faced by people living with scleroderma and to target gaps in access to psychosocial and rehabilitation services. For instance, the Canadian National Patient Survey on Health Concerns and Healthcare Needs was a survey initiated by Dr. Thombs’ research team within the framework of the Canadian Scleroderma Research Group and the Scleroderma Society of Canada. The survey was designed to identify under-researched topics important to people with scleroderma. The results from this survey were published in a National Survey report and went a long way toward identifying patients’ unmet psychosocial and rehabilitation needs, which SPIN has now prioritized.
The Scleroderma Patient-centered Intervention Network (SPIN).
In 2008, Dr. Thombs brought together patient organizations from around the world, along with top researchers and scleroderma experts from Canada, the US, the Netherlands, and France to create SPIN. SPIN is an organization designed to develop and test online programs to help people with scleroderma cope with important problems, such as fatigue, pain, hand function problems, coping with stress, and body image concerns due to changes in appearance from scleroderma. An important part of SPIN’s creation over the years was the active participation and involvement of scleroderma patients and patient organizations.
The objectives of SPIN are (1) to learn more about important problems faced by people living with scleroderma (e.g., fatigue, emotional distress, physical limitations); (2) to develop and test Internet-based programs to support people in their efforts to cope with living with scleroderma; (3) to work with patient organizations to make these programs available on an ongoing basis to people with scleroderma.