Work Disability Among People With Lupus
Being unable to work has a profound impact on chronically ill people and their families. Self esteem, socializing with peers, current income, and retirement assets can all be greatly reduced when a person becomes work disabled. Arthritis Foundation-funded researcher Ed Yelin, PhD, and his team at University of California, San Francisco, assessed the work patterns of people with systemic lupus erythematosus (SLE or lupus) at diagnosis and several years after diagnosis.
What Problem Was Studied?
Because lupus often begins at a fairly young age, during a person’s career-building phase of life, those people have a lot to lose if they cannot work. If diagnosed at age 30 and work disabled by age 35, a person with lupus may lose up to 30 years of income and have no money saved for retirement. To determine the levels of work disability and characteristics of people who become disabled, Dr. Yelin and team studied a large group of people with lupus over a number of years.
What Was Done In the Study?
Participants of a genetic study of lupus were recruited for the Lupus Outcomes Study (LOS). Of those in the genetics study, 982 enrolled in the LOS and answered questions to an initial interview. One year later, 832 of the participants answered the same questions again. The survey gathered data about the following:
- demographics and socioeconomic status – age, sex, ethnicity, education, income;
- SLE status – disease activity, disease manifestations;
- general health – height and weight, smoking status, diseases other than lupus;
- mental health – depression, cognitive function, stress;
- health insurance – type of coverage, copayments, drug coverage;
- health care utilization – number of doctor visits, medications taken, hospitalizations; and
- employment – if working, number of hours per week, number of weeks per year, occupation, demands of job.
What Were the Study Results?
The LOS participants had lupus for an average of ~12 years. Overall, 74% had been employed in the year of diagnosis, declining to 55% at the time of the first LOS interview and to 54% a year later at the second LOS interview. Among participants who had ever been employed, hours worked per week declined by ~35% between the year of diagnosis and the second interview; weeks worked per year declined by ~24%; and total hours worked per year declined by ~32%. By 5 years after diagnosis, 15% had stopped working; by 10 years, ~36%; by 15 years, 51%; and by 20 years, 63% had stopped working. These numbers represent a much lower employment rate than a similar group without SLE.
What Does This Mean For People With Lupus?
Among these people with lupus, diagnosis occurred in their mid-30s. More than half of those lost 20 years of earning potential. As Dr. Yelin notes in the article’s summary “Because much of the accrual of retirement savings occurs in these last two decades of a career, after one’s responsibilities to one’s children have passed, persons with SLE will have to face retirement with a much greater risk of poverty.” This grim reality brings to the forefront a need for occupational therapy and work maintenance programs that can help people with chronic diseases remain in the workforce. To reduce employment loss, Dr. Yelin recommends, “People with SLE must work with their employers to receive the job accommodations that are their due under the Americans with Disabilities Act (ADA). In particular, flexible work schedules have proven helpful so that those with serious illnesses can fit their illness episodes and need to obtain health care in and around work activities.”