1470: Work Disability and Function in Systematic Lupus Erythematosus (SLE): Results from a Mixed-Methods Exploratory Canadian Study

Behdin Nowrouzi-Kia¹, J. Antonio Avina-Zubieta², Mary T Fox³, William Shaw⁴, Maggie Ho⁵, Derek Haaland⁶, Janet Pope⁷, Paul R Fortin⁸, Kathleen Bingham⁹, Nathalie Rozenbojm¹⁰, Mark Matsos¹¹, Christine Peschken¹², Amanda Steiman¹³, Earl Silverman¹⁴, Jiandong Su¹⁵, Jennifer Reynolds¹⁶, Catherine Ivory¹⁷, Dafna Gladman¹⁸, Murray Urowitz¹⁹, Francisco Sanchez-Guerrero²⁰, Lily Lim¹², Stephanie Keeling²¹, Ana Soberanis¹, Patricia Katz²² and Zahi Touma¹⁵, ¹University of Toronto, Toronto, ON, Canada, ²Arthritis Research Canada, University of British Columbia, Vancouver, BC, Canada, ³York University, Toronto, ON, Canada, ⁴University of Connecticut School of Medicine, Framington, CT, ⁵University Health Network, Toronto Western Hospital, Toronto, ON, Canada, ⁶The Waterside Clinic, Oro Medonte, ON, Canada, ⁷University of Western Ontario, London, ON, Canada, ⁸Centre ARThrite - CHU de Québec - Université Laval, Québec, QC, Canada, ⁹Centre for Mental Health, University Health Network; Department of Psychiatry, University of Toronto, Toronto, ON, Canada, ¹⁰University Health Network, Toronto, ON, Canada, ¹¹McMaster University, Hamilton, ON, Canada, ¹²University of Manitoba, Winnipeg, MB, Canada, ¹³Sinai Health System, Toronto, ON, Canada, ¹⁴The Hospital for Sick Children and University of Toronto, Toronto, ON, Canada, ¹⁵Schroeder Arthritis Institute, Krembil Research Institute, University Health Network and University of Toronto, Toronto, ON, Canada, ¹⁶University of British Columbia Dept of Medicine, Division of Rheumatology, Vancouver, BC, Canada, ¹⁷University of Ottawa, Rheumatology, Ottawa, Canada, Ottawa, ON, Canada, ¹⁸Toronto Western Hospital, Schroeder Arthritis Institute, Toronto, ON, Canada, ¹⁹University of Toronto, University Health Network, Schroeder Arthritis Institute, Toronto, ON, Canada, ²⁰University Health Network/Sinai Health system, Toronto, ON, Canada, ²¹University of Alberta, Edmonton, AB, Canada, ²²UCSF, San Rafael, CA

Background/Purpose: Systemic Lupus Erythematosus (SLE) is a chronic, multisystemic, autoimmune disease which can result in disability and mortality. A functional assessment tool that measures the patient's ability to engage in activities of daily living (ADLs) such as commuting, using technology, or climbing stairs is needed because the inability to carry out these activities translates directly into poor quality of life, leading to poor work performance and absenteeism. The study objective was to describe a functional profile using clinical and patient-reported outcome measures, that identifies the underlying factors of disability and lived-experience in SLE patients.

Methods: A mixed-methods sequential explanatory approach was employed; self-administered questionnaires were used to collect data from patients at 8 Canadian centres (7 academic centres and one community centre), followed by individual interviews. In the first phase, patients who consented were asked to complete the self-administered questionnaires while physicians completed the clinical measures (Table 2). For the second phase, patients were individually interviewed using semi-structured questionnaire to understand their feelings and perspectives on facing the challenges that arise at the workplace due to perceived SLE-related disabilities. The interviews were transcribed verbatim and thematically coded (Figure 1). Summary statistics were computed for demographic, clinical and functional outcomes (Tables 1 and 2).

Results: The sample of 192 patients were mostly female (91.7%), Caucasian (67.2%), with a mean age of 47.6 ± 13.9, and a mean SLE duration of 15.6 ± 12.4 years. (Table 1) The clinical measures showed a SLEDAI-2K score of 4.1 ± 3.8 and an SDI of 1.1 ± 1.4. Patient-Reported Outcome Measures revealed that 22.4% suffered from fibromyalgia, and 32% had depression (defined by BDI score >/= 22); the mean score for the WRFQ was 72.4 ± 22.3, showing that patients experienced important limitations at work; the WHO-DAS 2.0 score of 25.8 is around 94th population percentile, which means only 6.2% of the population score higher (more disabled) than our sample (Table 2).

We identified three preliminary themes including: 1) grit and perseverance in managing their condition (adjusting activities and responsibilities when experiencing flare-ups, changing lifestyle such as diet and exercise) 2) resilient workforce (maintain work activities despite debilitating symptoms, disclosing illness to supervisor, fighting stigma of disease) 3) establishing and maintaining social supports at work (e.g., supportive employers and co-workers, workplace accommodations). The integrated findings provide plausible explanations for high levels of disability experienced.

Conclusion: Our preliminary analyses support the impression that work disability in lupus patients reflect a complex interplay of lupus-related, intrinsic (e.g., comorbidities) and extrinsic (e.g., work environment) factors, for which a functional profile could be of benefit in supporting those at highest risk for poor functional outcomes.
Table 1. Cohort Characteristics

Table 2. Clinical Measurements and Patient Reported Outcome Measures


Disclosures: B. Nowrouzi-Kia, None; J. Avina-Zubieta, None; M. Fox, None; W. Shaw, None; M. Ho, None; D. Haaland, AbbVie, Amgen, AstraZeneca, Bristol-Myers Squibb(BMS), Eli Lilly, GlaxoSmithKlein(GSK), Janssen, Novartis, Pfizer, Roche, Sanofi Genzyme, Takeda, Merck/MSD, UCB, Celgene, Adiga Life-Sciences, Can-Fite Biopharma, Regeneron, Gilead; J. Pope, AbbVie/Abbott, Bristol-Myers Squibb(BMS), Eli Lilly, merk, Roche, Seattle Genetics, UCB, Actelion, Amgen, Bayer, Eicos Sciences, Emerald, Gilead, Janssen, Novartis, Pfizer, Sandoz, Sanofi, Boehringer Ingelheim; P. Fortin, AstraZeneca, GlaxoSmithKlein(GSK); K. Bingham, None; N. Rozenbojm, None; M. Matsos, None; C. Peschken, None; A. Steiman, Pfizer, Jannsen; E. Silverman, None; J. Su, None; J. Reynolds, None; C. Ivory, None; D. Gladman, AbbVie, Amgen, Eli Lilly, Janssen, Gilead, Novartis, Pfizer, Bristol-Myers Squibb(BMS), Galapagos, UCB Pharma, Celgene; M. Urowitz, None; F. Sanchez-Guerrero, None; L. Lim, None; S. Keeling, None; A. Soberanis, None; P. Katz, None; Z. Touma, None.