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What if you lost hand function? The disabling impacts of scleroderma

What you need to know

Scleroderma is a debilitating inflammatory disease involving a build-up of scar-like tissue that can affect the joints and other organs, including the skin. For people with scleroderma, problems with hand function are a top concern that disrupts their daily lives, and treatment options are limited. A 2018 study identified disease features linked to hand function, which will inform new management approaches to improve quality of life.

What is this research about?

Scleroderma (sometimes called systemic sclerosis) is a rare autoimmune disease that involves a build-up of tough scar-like tissue in the skin and sometimes other organs. This often causes deformities and other problems in the hands, which can make daily activities a struggle. More insights into what impacts hand function were needed to help guide education, prevention initiatives, and new treatment approaches.

What did the researchers do?

Dr. Brett Thombs leads the Scleroderma Patient-centered Intervention Network (SPIN), an international group of researchers, healthcare providers and people living with scleroderma. Since scleroderma is rare, SPIN takes an innovative, coordinated approach to studying people with the disease from 45 sites across North America, Europe, Mexico, and Australia. Dr. Thombs and his team performed a pioneering study of over 1,000 people from 37 of those sites to identify features linked to hand function in scleroderma.

What did they find? 

Hand function was worst in people whose disease caused finger sores, deformities in the hand joints, or Raynaud’s phenomenon – a condition that affects blood flow in the fingers in response to cold or stress. Impaired hand function was also more common in females, smokers, and people with higher body mass index (BMI), rheumatoid arthritis (RA), or unexplained muscle inflammation.

How can this research be used? 

The impact of scleroderma on the hands is pervasive, and while some medications can help manage symptoms, they’re not a solution for everyone. The findings from this study highlight that people with scleroderma need access to therapies for managing the impact of finger sores and hand deformities to maintain the function of their hands.

This can guide studies of new treatment programs, like the ongoing SPIN-HAND study led by this research group. SPIN-HAND is a clinical trial of a hand exercise program that is delivered online, allowing it to reach people with scleroderma across the world. This research can also be used to inform patient education initiatives and strategies to prevent loss of hand function.

What impact could this have?

If the SPIN-HAND trial or other studies of hand exercise programs show them to be an effective way to preserve or improve hand function in people with scleroderma, this could make a vast difference in their daily lives. While the disease is rare, the burden at the personal level can be devastating. An online therapy program like the one in the SPIN-HAND study could offer a cost-effective way to ensure people with scleroderma have access to care no matter where they live – care that could change how they live every day.

About the researcher

Dr. Brett Thombs, who trained as a clinical psychologist, is a professor and scientist at McGill University and the Jewish General Hospital. His research program was supported in part by an Arthritis Society Investigator Salary Award awarded in 2013, and the SPIN-HAND study was supported by an Arthritis Society Strategic Operating Grant awarded in 2016.

Researcher Reflection

Photography of Sowmya Viswanathan

This study underlines why it is so important to develop and test tools, as we are doing in the Arthritis Society–funded SPIN-HAND Program Trial, to meet the specific needs of people living with scleroderma.

–   Dr. Brett Thombs, Jewish General Hospital

Real-world Reaction

For people with scleroderma, problems with hand function can quickly create daily challenges that no one would anticipate. For me, the most impactful component of physiotherapy was going home with stretches, exercises, simple treatments and self-care techniques that I could do every day on my own. Programs like this can help connect a community of people to the information needed to overcome their daily challenges.

–   Tiasha, living with scleroderma

“Nothing about us, without us”: Measuring meaningful patient engagement in research

Publication citation

Kwakkenbos L, Sanchez TA, Turner KA, Mouthon L, Carrier ME, Hudson M, van den Ende CHM, Schouffoer AA, Welling JJKC, Sauvé M, Thombs BD; and the SPIN Investigators. The association of sociodemographic and disease variables with hand function: a Scleroderma Patient-centered Intervention Network cohort study. Clin Exp Rheumatol. 2018;36 Suppl 113(4):88-94.