Background/Purpose: Although work disability presents a substantial burden for people with systemic sclerosis (SS), there are no tailored programs that aim to support their employment. Making it Work^TM (MiW) is an online program that aims to help people continue working with their disease¹. Originally developed in Canada for people with inflammatory arthritis, we adapted the program for the unique challenges faced by people with SS in the USA. Making it Work in Systemic Sclerosis (MiS-SS) consisted of a modular workbook, online group discussions and goal setting with peers, and individual occupational therapy and vocational counseling sessions.

The purpose of the study were: 1) to determine the acceptability of the adapted program format and content of MiW-SS, and 2) to complete a preliminary analysis of its potential impact on job self-efficacy to make changes at work, self-efficacy to use concepts from the MiW-SS program, and risk for job loss. 

Methods: Participants were recruited from the National Scleroderma Foundation and word of mouth.  Inclusion criteria were >18 years of age, employed in the USA, English-speaking and self-reported SS diagnosis affecting work. Sixteen participants were divided into 3 five-week programs and discussed content included managing fatigue, dealing with stress, and communication at work, as well as ergonomic and job accommodations. Pre- and post-intervention, participants completed a job characteristics questionnaire and the Job Related Self-Efficacy Scale (JRSES), Job Self-Efficacy Scale (JSES), and Work Instability Scale (WIS).  Data were analyzed using descriptive and inferential statistics.  Participants also provided qualitative feedback on the program, which were reviewed using rapid analysis.   

Results: Fifteen women and one man completed the program.  Mean age was 46.0±12.6 years; disease duration was 7.75±7.87 years; 38% had diffuse SS; 75% were non-Hispanic White; over 94% competed a college degree; and 50% were married.  Significant improvements were seen in median scores on the total JRSES (p= .004) and subscales for confidence modifying tasks (p=.003) and communicating needs (p=.01). Scores on the JSES (p=.02) and the WIS also improved significantly (p=.01).  Participants stated that hearing from fellow “patients” was one of the “biggest value-added parts” of MIW-SS, especially because everyone was working. Participants noted that other support or online group members were retired or on disability, and therefore in “a different spot in their life.” On the contrary, the commonality of employment fostered much needed connection and empowerment: “it’s encouraging to see people and hear people who have the disease to a certain level and they’re still working- they’re pushing forward and working.”

Conclusion: Participants emphasized that a group focused on employment and scleroderma is needed. MiW-SS resulted in improvements in self-efficacy and reduced risk of work disability in a small group of employed people with SS.  Larger randomized control trials are needed to determine program effectiveness.

< !1. Lacaille D et al. “Employment and Arthritis: Making It Work” program. Arthritis Rheum. 2008; 11:1647-55.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/piloting-an-adaptation-of-the-making-it-work-program-for-systemic-sclerosis-promising-effects-on-job-related-self-efficacy-and-risk-of-work-disability/