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Young Rheum Patients Face Big Hurdles at Work

At what is arguably the most important juncture in anyone’s working life — their first “real” jobs — those with rheumatologic conditions believe their employers could do more to help them, survey data indicated.

Some 53% of respondents, whose mean age was 29 (SD 4.5), said they had unmet support needs at work, according to Arif Jetha, PhD, of the University of Toronto, and colleagues.

Moreover, disclosing their condition to employers may have added to the workplace pressures that respondents felt. Levels of “presenteeism” — showing up for work despite experiencing symptoms that impair their performance — were greater among those who disclosed than for those who didn’t (mean rating 5.2 vs 4.2 on an 11-point scale), the researchers reported in Arthritis Care & Research.

These data “underscore the importance of equipping young people with resources that can be used to navigate disease disclosure and requests for support as they establish their careers with a rheumatic disease,” Jetha and colleagues concluded.

As young people seek to establish themselves on a career path, having to deal with a chronic disease certainly doesn’t make it easier. Illnesses such as autoimmune arthritis, Jetha’s group noted, are often “seen by others as a condition of older adults.”

Furthermore, they wrote, “research has found that intermittent and unpredictable disease symptoms coupled with less job tenure, inexperience with workplace self-advocacy, and poorly established relationships with a supervisor are commonly described barriers to communicating needs and requesting workplace supports.” The survey indicated that respondents were most interested in having modified job requirements, more flexibility in scheduling, and/or help with drug coverage.

As a result, when a young person develops such an illness, “there may be apprehension in requesting assistance out of concern of a negative reaction from supervisors,” the researchers observed. But most of the existing research on how rheumatologic conditions affect people’s work lives has focused on older people.

To explore how these issues play out in a younger population, Jetha and colleagues sought to find young adults with jobs and rheumatologic diagnoses, eventually recruiting a total of 306. Inclusion criteria were ages 18-35, employment during the past year, and a physician diagnosis of conditions such as juvenile idiopathic arthritis, rheumatoid arthritis, lupus, and certain others. About two-thirds of participants were located through a large, privately run survey panel in Canada; the rest were recruited from Canadian rheumatology clinics and nonprofit support groups for young rheumatology patients.

Some 70% of respondents said they had told their supervisors about their diagnoses. Those who had not disclosed it tended to have less severe illness and were more likely to rate their overall health as good or better. The non-disclosing group also reported fewer limitations on their work abilities. The two groups were otherwise similar in sociodemographic and workplace characteristics.

Of note, those who disclosed their condition and who reported unmet needs at work were more likely to rate their presenteeism higher — by 1.59 points on the 11-point scale relative to the 16% of respondents who said their support needs were exceeded.

Limitations to the study included its reliance on respondents’ self-reports for most data, and details of communications between participants and their employers were lacking. Also, as the survey was conducted in Canada where health insurance is universal, the results may not be generalizable to the U.S. and its spotty insurance system.

  • John Gever was Managing Editor from 2014 to 2021; he is now a regular contributor.

Disclosures

The Arthritis Society helped fund the study.

The authors declared they had no relevant financial interests.

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