Background/Purpose: Systemic sclerosis (SSc) limits participation in paid employment, threatening well-being. Few resources exist to help people with SSc remain in the work force despite the high prevalence of work disability¹. The programs that do exist were developed for other rheumatic conditions such as arthritis.² The objective is to engage workers with SSc to adapt the Making it Work^TM (MiW) program, an evidence-based program developed to prevent work loss and maintain productivity for Canadians with arthritis.

Methods: Participants were adults ≥18 years of age who were currently employed in the United States (U.S.), English-speaking, and self-reported SSc diagnosis affecting work. Participants were recruited through the National Scleroderma Foundation and word of mouth. This session provides results from the first steps of the ADAPT-ITT model of implementation science.³ Fourteen people with SSc engaged in 3 focus groups to help the researchers understand the unique needs of workers with SSc in the U.S. Nine people with SSc reviewed at least one online module from the MiW program with researchers, and described their perceptions using the think-aloud technique. Participants completed a survey rating the relevance of the content to SSc. Interviews were recorded and transcribed.

Results: Focus group participants generated a list of over 50 unique workplace challenges. While some challenges overlapped with those identified in the original MiW program, notable differences included an emphasis on hand function, sensitivity to temperature, and the systemic nature of SSc affecting all body systems. Think-aloud interview participants confirmed that the adapted MiW program should include accommodations and strategies for pulmonary, cardiac, and systemic affects for people with SSc. Also echoing focus groups, interview participants emphasized that oftentimes, people with SSc “don’t even know any of [the MiW resources] exists” and therefore cannot ask for them. While many had already worked through their own employment issues, they stated that had it been available, the MiW program would have efficiently guided their work plans. Participants reacted positively to plans to add a fillable workbook to increase interaction and implementation of the content, promote goal setting and follow through, and act as a resource during discussions with their employers and healthcare professionals.

Conclusion: Workers with SSc have unique needs that remain unaddressed in existing programs tailored to other rheumatic conditions. Our next step is to continue working with patients and other topic experts to make the necessary adaptations to the MiW program for SSc and pilot test its effectiveness.
1.Lee JJ et al. Employment outcomes in systemic sclerosis. Best Pract Res Clin Rheumatol. 2021;35:101667. 2. Luquini A, et al. Effectiveness of the Making It Work™ Program at Improving Presenteeism and Work Cessation in Workers with Inflammatory Arthritis–Results of a Randomized Controlled Trial. Arthritis Rheum. 2020;72(S10):2960-62.
3.Wingood GM, DiClemente RJ. The ADAPT-ITT model: a novel method of adapting evidence-based HIV Interventions. J Acquir Immune Defic Syndr. 2008:1;47:S40-6.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/adaptation-of-the-making-it-worktm-for-people-with-systemic-sclerosis/