Pos1398-hpr support needed by people with systemic sclerosis to remain in the workforce

Background Systemic sclerosis (SSc) severely limits one’s ability to participate in paid employment, which may threaten an individual’s economic, social, physical, or mental well-being. No programs and very little resources exist to help people with SSc remain in the work force despite the high prevalence of work disability. The few programs that do exist were developed for persons with other rheumatic conditions. One evidence-based program, Making it Work TM (MIW), has the potential to be adapted to meet the specific work related problems faced by people with SSc. Objectives This study identified challenges in the work environment and supports received or desired by persons with SSc as a preliminary step to identify adaptations that could make the MIW TM more relevant to people with SSc. Methods Participants were recruited through virtual communication from the National Scleroderma Foundation and word of mouth to participate in one 2-hour virtual focus group. Participants were > 18 years of age, currently employed or stopped work in the past 5 years, United States residents, English-speaking, and self-reported a diagnosis of SSc and that SSc affected their work ability. Participants were first asked about difficulties working with SSc. The facilitator created a list of challenges based on initial discussion, then participants identified the top five most important challenges according to their experience. Participants were then asked about supports received or desired to help maintain employment. Focus group notes and transcripts were analyzed to determine challenges and supports that must be addressed in an employment intervention for people with SSc. Results The sample included 14 participants (85.7% women, mean age 48.8±10.1 years, mean disease duration 7.7±7.4 years; 78.6% had diffuse SSc). 71.4% had college degrees and 71.4% were employed full time. 42.9% described their jobs as having mostly mental demands while 35.7% had both physical and mental demands. Important challenges prioritized by the most participants were: 1) challenges with physical tasks, particularly related to hand use [11, 78.6%] –“ My hands are pretty messed up; typing is a challenge ”; 2) fatigue [9, 64.3%]-“W hen you say fatigue, people are like, “Well, go take a power nap,” but that’s not what it is. I could sleep 12-hours and still be exhausted”; 3) mental and emotional health, related to coping with how the unpredictability of SSc affects the body, identity, and employment [8, 57.1%]-“ This disease does not just knock us down one time or challenge us on one level. It’s like one body system after another .”“ You have to deal with the issues of your self-esteem, feeling like you’re different than everybody else, mourning that loss of ability or career or work ethic that you had prior to your diagnosis” Participants identified a variety of individualized strategies that enabled them to overcome challenges with SSc at work, including ways to plan ahead, adaptive equipment, and strategies to adapt job tasks. However, participants emphasized that in order to use these tools, it is most helpful to: 1) have the knowledge and advocacy skills to know what to ask for; 2) feel confident that asking for support or accommodations in the workplace will lead to a beneficial change; and 3) be able to problem solve with others (e.g., clinicians, work-related program, therapists, support group). Conclusion This study identified the prominent barriers and supports to employment from the perspectives of patients with SSc. While there is some overlap with issues reported by persons with other rheumatic conditions, there are also SSc-specific concerns. This information will be used to adapt the MIW TM intervention, and warrants further consideration for how to incorporate better supports in healthcare, workplaces, and vocational counseling for people with SSc. REFERENCES: NIL. Acknowledgements: NIL. Disclosure of Interests None Declared.