Background/Purpose: A considerable body of evidence highlights the negative impact of rheumatic disease on employment. However, most research examines middle- and older-aged adults. We lack information on the employment experiences of young adults with rheumatic diseases who are transitioning to adulthood.

Objectives: To describe the working experiences of young adults (ages 18 to 30 years)  with systemic lupus erythematosus (SLE) and juvenile arthritis (JA) in terms of: 1) employment status 2) disease-related job absenteeism and disruptions and 3) demographic, health, psychological and work factors associated with job disruptions.

Methods: 143 participants (mean age=23.3 years, SD=3.5, 80%=female) with SLE (n=78) and JA (n=65) were recruited from rheumatology clinics in four Canadian provinces (Ontario, Saskatchewan, British Columbia and Alberta). All completed an online questionnaire asking about demographic (age, gender, education), health (diagnosis, pain, fatigue, disease activity), work context (job sector, hours worked), absenteeism, job stress, and psychosocial factors (perceived independence, disclosure of disease). The number of disease-related job disruptions (work interruptions, arriving late/leaving early, missed meetings) were also asked (1=yes; 0=no). A multivariate linear regression analysis examining the association of demographic, health, work context, and psychological factors with disease-related job disruptions was conducted.

Results: 61% of the sample were employed, 26% were students and 13% were not working. Participants mostly reported a well controlled disease with low pain (mean=3.5 SD=3.0), fatigue (mean=4.2, SD=3.1) and disease activity (mean=3.1, SD=3.0). 56% had attended post-secondary school. Among those employed, half worked full-time (54%) and about a third of participants worked in sales and service jobs (36%). Over half of employed participants (53%) reported at least one disease-related job disruption (mean=1.5, SD=2.3; range: 0–7) and 56.5% reported a job absence because of their disease in the previous 6 months. The most common disease-related job disruptions in the past 6 months were work interruptions of 20 minutes or more (33%), lost time because of arriving late/leaving early (22%) and being unable to work requested schedules (20%). Greater job disruptions were significantly associated with older age, greater job stress, workplace activity limitations, and having disclosed arthritis to one’s manager. Increased fatigue and perceiving that one would be able to remain employed were significantly associated with fewer job disruptions.

Conclusion: Similar to their healthy peers, the majority of young adults with SLE and JA in this sample were employed or pursuing an education. However, many experienced disease-related absenteeism or job disruptions that were associated with having discussed their disease with an employer, higher work stress and workplace limitations, signaling the need for intervention. Flextime or workplace self-management are examples of interventions, in this age group, that may improve long-term success in employment.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/transitioning-to-adulthood-employment-experiences-of-young-adults-with-lupus-and-juvenile-arthritis/