As the study by Jazayeri et al in this issue of The Journal of Rheumatology points out, the prevalence of unemployment in people with systemic sclerosis (SSc) is estimated at 40.5%, and SSc is associated with “presenteeism (ie, working while unwell), lack of participation in employment, and ultimately, absenteeism.”1 This is of course true of patients with the many other musculoskeletal diseases that we as rheumatologists treat.

I suspect that many rheumatologists assume the direct cause of the various levels of unemployment in our patients is related solely to their various diseases and the associated disabilities that accompany that. However, as Jazayeri et al state,1 personal factors, work context, and workplace practices all play a role in an individual’s work performance. The hypothesis of their study is that disease factors are not the sole contributors in maintaining employment; rather, other factors such as demographics and job context need to be accounted for to ensure meaningful employment.

An important aspect of the job context is the willingness of the employer to provide, and that of the patient to request, accommodations in the workplace for the patient’s disabilities.

In Canada, where this study took place, the Canadian Human Rights Act gives effect to the following principle: “all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society” (section 2 of the Act).2 The Act protects against discriminatory practices, based on one or more of the prohibited grounds of discrimination, which would hinder this principle. The grounds of discrimination prohibited by the Act include disability.2

Employers are expected to take steps to adjust practices that have a negative impact on an individual’s full participation in the workplace based on prohibited grounds of discrimination in the Canadian Human Rights Act. This is called the “duty to accommodate.”3

The duty to accommodate means that sometimes it is necessary to treat someone differently in the workplace in order to prevent discrimination. Employers have a duty to accommodate an employee’s needs when they are based on any of the grounds listed in the Act.3 Because the needs of each individual are different, accommodation requires an individualized approach.

Despite the duty to accommodate being the law in Canada, the law also recognizes that this duty ends when an employer reaches the point of undue hardship, which is when accommodations would be prohibitively expensive or could create health or safety risks.

However, accommodations can only be given if the employee discloses their accommodation needs to the employer. Unfortunately, people do not always come forward. The employee’s responsibilities include making their accommodation needs known. This does not require the disclosure of the specific cause of their needs but only the effects that create the need for accommodation. They must also supply documentation in support of their request, including information about any restrictions or limitations. In most cases this would require a written document by a health professional.

In the study by Jazayeri et al, patients with SSc were asked about the availability of job accommodations at their workplace via a list of 9 workplace practices, benefits, and policies, including items such as flexible hours, extended health benefits, modified work, special equipment, work at home, and wellness programs.1 Participants were asked whether the accommodation was available, whether they needed it, whether they used it, and whether it was helpful.

They studied 110 patients with SSc who were employed and 30 who were unemployed but had worked in the previous 5 years. Those who had no flares, less pain, and greater self-rated health were more likely to be employed. However, very strikingly, the availability of workplace accommodations was more commonly reported by those employed than those who had given up employment: more flexible hours, more rest periods, more special equipment, and more work schedule flexibility. Eighty percent of those unemployed needed flexible hours or flex time, and only half of those thought it was available at their jobs. The same applied to the need for rest periods and was somewhat similar for other work accommodations.

What is not described is how many subjects in either group asked for specific accommodations they felt they needed; how many of those patients were offered accommodations; and of those who were offered accommodations, how many accepted them and found them either adequate to continue working or not.

It would also be interesting to better understand the landscape regarding awareness of the protections afforded by the Canadian Human Rights Act2 by both patients and physicians: the role of physicians in making patients aware of their rights, and the availability of healthcare personnel to provide patients with an accurate assessment and report of their disabilities with regard to their particular type of work.

It was only after reading this study1 and being asked to write this editorial that I became aware of the importance of the Canadian Human Rights Act and the details of the duty to accommodate at a person’s place of work.2,3 I have very little knowledge of how many of my own patients are aware of their workplace rights and have rarely had any discussions with them about their right to job accommodations.

Another issue that arises in the discussion of helping patients with their jobs is their need for comprehensive, detailed assessments of their disabilities. Time and again I have been asked to fill out questionnaires about disability, which included items such as how far the patient can walk uninterrupted and how high a step they can climb. Frankly, I feel I am not competent to answer many such questions and have asked that the patient be assessed by an occupational therapist (OT) with the appropriate expertise. That has often led the patient into a black hole. In Canada, health services are provincial responsibilities. When I started practice, and I can speak only for my province of Quebec, almost all hospitals had OT departments where outpatients could be referred, and the service would be free for the patient. This is now a thing of the past. Free access to an OT is relegated to contacting a local community service center that employs OTs and is run by the provincial government. The waitlists are enormous and for a work disability assessment it could take a year or longer to be assessed. There are also private OTs in the province, but their fees may be out of reach for an unemployed patient.

Although the study by Jazayeri et al1 is restricted to one of the rheumatic diseases and to Canadian patients only, numerous studies have addressed the issues of job accommodation in other rheumatic diseases and other causes of disabilities.4-19 It is interesting that in systemic lupus erythematosus, the most common job accommodation used was sick leave days, which is not an unusual accommodation and does not require any true workplace adaptations.4 It has been found that inclusive and supportive workplace environments—not employee psychosocial factors—are the key factors in increasing the likelihood of receiving accommodations as well as the subsequent association between receiving the accommodation and job satisfaction.5 However, it is also true that many patients with arthritis do not use their benefits and/or accommodations until needed, and in those who use them, the various employment outcomes were generally positive.7

Episodic or intermittent disability is also an important issue and perhaps needs to be addressed differently from permanent disabilities. Although there are many people with arthritis who report some intermittent difficulty with workplace activities, they may not experience changes in their work productivity unless the difficulties are consistently high.8

There are of course some barriers, such as fear of losing one’s job, that may prevent patients from disclosing disabilities. It appears that “approach goals (eg, desire support, want to build trust, maintain the status quo at work) were significantly associated with perceived positive work outcomes regardless of whether a participant disclosed or did not disclose a disability at work, whereas avoidance goals (eg, concerns about losing one’s job, feeling forced to disclose because others notice a problem) were associated with perceived negative work outcomes.”13 An extensive review of workplace accommodations has shown that “attitudinal and social barriers stemming from stereotypes, ignorance, and lack of knowledge are as important as physical barriers to employment for persons with physical disabilities.”15

The study by Jazayeri et al1 should be a reminder to rheumatologists that they can help patients experiencing work issues, not only by addressing their disease issues but also by reminding them that workplace accommodation may be available to them and guiding them through that process.

The author declares no conflicts of interest relevant to this article.

See Employment landscape in SSc, page 622