Young Rheum patients face big hurdles at work

At what is arguably the most important time in anyone’s working life – their first “real” job – people with rheumatological conditions believe their employers could do more to help them, according to survey data.

According to Arif Jetha, PhD, of the University of Toronto, and colleagues, some 53% of respondents, with a mean age of 29 (SD 4.5), reported having unmet support needs at work .

Additionally, disclosing their condition to employers may have added to the workplace pressures felt by respondents. Levels of “presenteeism” – showing up for work despite having symptoms that impair their performance – were higher among those who disclosed than among those who did not (mean score of 5.2 versus 4.2 on an 11-point scale), the researchers reported. in Arthritis care and 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 illness certainly doesn’t make things any easier. Diseases such as autoimmune arthritis, Jetha’s group noted, are often “considered by others to be a condition of the elderly.”

Further, they wrote, “research has found that intermittent and unpredictable symptoms of the disease, associated with less job tenure, inexperience with self-representation in the workplace, and poorly established relationships with a supervisor are commonly described barriers to communicating needs and seeking support in the workplace”. The survey indicated that respondents were more interested in having modified job requirements, greater schedule flexibility, and/or assistance with drug coverage.

As a result, when a young person develops such an illness, “there may be apprehension about asking for help for fear of a negative reaction from supervisors,” the researchers observed. But most of the existing research on how rheumatological conditions affect people’s working lives has focused on older people.

To explore how these problems manifest in a younger population, Jetha and her colleagues sought to find young adults with jobs and rheumatology diagnoses, ultimately recruiting a total of 306. Inclusion criteria were ages 18 to 35 years, a job in the past year and a doctor. diagnosis of conditions such as juvenile idiopathic arthritis, rheumatoid arthritis, lupus and some others. About two-thirds of the participants were located through a large private investigation panel in Canada; the rest were recruited from Canadian rheumatology clinics and non-profit support groups for young rheumatology patients.

Some 70% of respondents said they informed their supervisors of their diagnosis. Those who did not disclose tended to have less severe disease and were more likely to rate their overall health as good or better. The non-disclosure group also reported fewer limitations on their working abilities. The two groups were otherwise similar in terms of sociodemographic and workplace characteristics.

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

Limitations of the study included that it relied on respondents’ self-reports for most data, and details of communications between participants and their employers were lacking. Also, because the survey was conducted in Canada where health insurance is universal, the results may not be generalizable to the United States and its unequal insurance system.

  • John Gever served as editor from 2014 to 2021; he is now a regular contributor.


The Arthritis Society helped fund the study.

The authors have declared that they have no relevant financial interests.

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