Scleroderma, also called systemic sclerosis (SSc), is a spectrum of connective tissue disorders with unknown etiology that are characterized by vasculopathy, autoimmunity, and fibrosis 1. The US incidence and prevalence of scleroderma has been estimated at 15.1 per 100,000 person-years and 25.9 per 100,000 people, respectively 2, and the disease affects millions of people globally. The majority (~ 70–90%) of people with scleroderma develop lung fibrosis 3,4, and 25–30% develop progressive interstitial lung disease which is a leading cause of death among these patients 3,5. However, scleroderma can produce life-threatening complications in multiple organs including the cardiovascular, gastro-intestinal, and renal systems 5,6.
Disease management has improved over the past decade 7,8 largely due to earlier detection which was facilitated by the 2013 release of classification criteria from the American College of Rheumatology and European League Against Rheumatism 9. Currently, standard treatment primarily focuses on controlling or managing disease processes and relies on pharmacologic therapy with immunosuppressive, antifibrotic, and anti-inflammatory medications 1,7,8. Additional treatments include heterologous/autologous stem cell transplantation, organ transplantation, and surgery1,10,11. While standard care can be effective in moderating disease progression, it often fails to address (and can contribute to) secondary symptoms 12 such as dry mouth, dry eyes, fatigue, shortness of breath, muscle weakness, anxiety, depression, pain, and sleep disruption 13,14.
Daily persistence of secondary symptoms, along with the fact that it is a chronic, disfiguring, and progressive disease, take a both a physical and psychological toll 15,16 17. Thus, regardless of an individual’s treatment regimen efficacy, many people with scleroderma continue to experience severely compromised quality of life (QoL) 18–20. Studies find that interventions using formal cognitive behavioral therapy and informal peer support groups can improve QoL and psychological symptoms such as isolation, depression, and anxiety15,16,21,22. However, people with scleroderma may have reduced access to these types of group and in-person interventions for several reasons. Scleroderma is relatively rare, which enhances isolation due to the limited number of people with the disease living locally in any given area or community23. Body image concerns are common among people with scleroderma who are often reluctant to venture into new social settings because the most outward aspects of the body–the face and hands–are often disfigured by the disease’s characteristic skin tightening and joint deformity16,24. Scleroderma patients are highly vulnerable to severe outcomes if exposed to the COVID-19 virus, making face-to-face interactions in a traditional support group setting ill-advised 25. Finally, the fluctuating nature and severity of scleroderma symptoms and the high number of healthcare visits most patients typically have also contribute to limiting in-person attendance at group or individual support sessions.
There is a need for low-cost, effective, non-pharmacological interventions to help people with scleroderma manage secondary symptoms and potentially improve their QoL. A study of women with scleroderma found that self-help interventions focused on maintaining a positive attitude, having a strong support system, committing to moving ahead with life, and accessing high-quality health information cultivated a sense of “taking control of their illness” that they felt improved their QoL. In this study, participants reported feeling better prepared to implement self-advocacy strategies in their own disease management 22.
In recent years, more people have begun using yoga and regulated breathing exercises to support their overall health and sense of well-being. However, while the overall number of people practicing yoga in the US rose by ~ 150% from 2012 to 2018 26, people with scleroderma are less likely to take up yoga due to the previously discussed barriers and that few yoga programs are designed to accommodate their specific needs 27,28. Studies find that practicing yoga and regulated breathing techniques not only produce positive psychological effects but also beneficial physiological effects in the autonomic nervous system, metabolism, immune system, inflammatory processes, electrophysiology, and relaxation response 29–31. For example, yoga is found to reduce feelings of anxiety and depression and support a positive quality of life32,33 in several disease states; decrease inflammatory biomarkers associated with scleroderma such as IL-1β, IL-8, IL-6 and MCP-1 34,35, and increase salivary nerve growth factor, immunomodulators, and tumor suppressing factors 36,37 while reducing salivary pro-inflammatory cytokines associated with stress 38.
More work is needed to provide access to yoga interventions for scleroderma patients who may benefit from the associated positive psychological and physiological effects. For example, delivering gentle yoga and yogic breathing (GYYB) exercises via telehealth systems may reduce barriers to participation by people with scleroderma by allowing at-home access. Telehealth approaches are also thought to help reduce health disparities and promote health equity; however, its use among scleroderma patients has historically been limited 39–41.
We hypothesized that a no-cost gentle yoga and yogic breathing (GYYB) intervention that patients could do at home might support a beneficial sense of empowerment in their symptom management and improve QoL. Here, we report findings from a pilot study of a novel telehealth GYYB intervention for scleroderma patients.