Workplace barriers among people with rheumatic and chronic back pain: Results from the work experience survey for rheumatic conditions

1 Introduction

Despite advancements in medical and pharmaceutical interventions in the past two decades, arthritis and chronic back pain are still considered the leading causes of work disability [1, 2]. Work disability is operationalized as loss of employment or limitations in performing work activities [3]. According to a national study of the prevalence of arthritis-attributable work limitations, one in three working adults with arthritis report limitations in their work due to their health condition [4]. Preventing work disability is imperative given the impacts on individuals, their families, and societies. The societal work losses in the United States are estimated to be four times greater than direct medical care costs alone, including losses in presenteeism (loss of work productivity because of health condition when at work), and absenteeism (loss of work productivity due to taking time off because of health condition) [5–7].

Intervening on work factors before health-related work cessation can sustain the individuals’ employment status and improve participation in work-related tasks [8–10]. While evidence-based approaches targeting employed people with arthritis in their workplace are limited, there is one multicomponent intervention effective in reducing the incidence of job loss among employed individuals with arthritis over time. This evidence-based intervention includes: (1) identification and prioritization of work-related barriers, (2) engagement in a collaborative solution generation process to address prioritized barriers, and (3) the provision of resources for advocacy and problem-solving that prevents premature employment cessation [11, 12]. The first two steps of this evidenced-based intervention uses a structured tool called the Work Experience Survey for Rheumatic Conditions (WES-RC).

The WES-RC [2] is a pen and paper interview tool consisting of eight sections. The first section contains items on demographic, health, and work history information. Sections two to seven identified as “barriers,” contain 120 potential barriers or challenges for an employed individual with arthritis in these six domains: (i) getting ready for and traveling to and from or for work, (ii) workplace access, (iii) completing job activities, (iv) relationships with people at work, (v) working conditions and company policies, and (vi) job, career, and home life. The last section, section 8, includes a problem prioritization and solution development worksheet [13].

Of note, the WES-RC includes items that could be barriers to work, but are not workplace-based, e.g., commuting problems, stairs at home, and family responsibilities, as well as items that are explicitly related to rheumatic conditions such as sensitivity to light. These items can be problematic for people with rheumatologic and musculoskeletal conditions and could impact work abilities [2].

The barriers reported on the WES-RC could provide context for the perceived challenges individuals with arthritis encounter relating to work, allowing clinicians to plan and implement interventions to reduce the likelihood of work loss. The degree to which people report barriers on the WES-RC is not known. The purpose of this study was to characterize the types of barriers and approaches reported on the WES-RC among individuals at risk of work loss due to arthritis, rheumatological conditions, and lower back pain, as well as therapists’ perspectives regarding the administration of this tool.

2 Methods

The study was approved by the Boston University Institutional Review Board (IRB) (Jan 2014, IRB approval no. 90RT5009-01). Data were obtained from a larger randomized controlled trial-the “Work-It” study’s intervention arm [11]. The “Work-It” study intervention protocol and results are described in detail elsewhere [11, 12]. In brief, eligible participants in the “Work-It” trial were between 21 and 65 years; self-reported arthritis or another rheumatic condition (including but not limited to rheumatoid arthritis, osteoarthritis, lupus, scleroderma, and others, in addition to chronic lower back pain); worked at least 15 hours weekly; had no plans to discontinue working in the next two years of enrollment; and worked or lived in Massachusetts. The intervention tested in the “Work-It” trial, delivered by trained occupational therapists (OTRs) and physical therapists (PTs), included a one-time, 1.5-hour meeting between the interventionist and the participant. The WES-RC was completed during the 1.5-hour meeting at the beginning of the session to provide a context for the solution-generating discussion and development of a written action plan.

To complete the WES-RC, interventionists start with prompting study participants to complete the first section relating to demographic, health, and work history information. Then, participants were asked to go through barrier section, and check items that are sometimes or always a problem for them within each domain. At the end of each domain, participants were asked to indicate if any of the items they checked were major problems for them. If they answered yes, they were asked to put a circle around that item (See Fig. 1). To complete the last section on the WES-RC, participants were asked to review all the problems identified in the six domains and list the three most bothersome problems or barriers to their employment. Then, participants engaged in a solution generation process with trained interventionists to identify an action plan to address the three most bothersome barriers, including identifying people or resources that can help them. Completed WES-RC’s were obtained from the interventionists.

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Fig. 1

Sample WES-RC entry.

All data from the completed WES-RC packets were extracted and recorded on a master WES-RC score sheet. Demographic, health, and work history information was analyzed, and participant selection of each barrier in the six domains on the WES-RC was tallied. We report all items with at least 25% of participants indicating the item was a barrier. In the last section of the WES-RC, where participants prioritized the top three problems and developed solutions, we counted the number of times each item was reported as the 1st, 2nd, and 3rd most bothersome barrier. We tallied the counts and report descriptive statistics characterizing the findings.

The WES-RC was completed by 143 participants. The mean age for this study sample was 50.3 years (range 23–66), 73% were female, 66% white, 68% not currently married, and 59% had a college degree or higher. Osteoarthritis was the most commonly reported condition (43%), followed by rheumatoid arthritis (23%), chronic back pain (13%), fibromyalgia (11%), and psoriatic arthritis (5%). Systematic lupus erythematosus, psoriatic arthritis, ankylosing spondylitis, and systemic sclerosis were reported by 2%, 1%, 1%, and 1% of respondents, respectively. Seven percent also reported a condition classified as ‘other.’ Over 50% of the sample reported pain, fatigue, and stress, followed by sudden change in symptoms and depressive symptoms (Table 1).

All 120 barrier items of the WES-RC were checked by at least two participants overall, except three ‘other’ open-ended items that did not have any write-in responses. Thirty-four items were checked by fewer than 10 participants; the remaining items had 10 or more respondents indicating the item was a barrier. In the WES-RC ‘Getting Ready for Work and Travelling to and from or for Work’ and ‘Workplace Access’ domains, eight items were reported by at least 25% of participants: doing stairs at home, lifting and/or carrying things, driving (sitting for a long time), getting out of bed, extra time needed for dressing, preparing breakfast, stress of getting to work on time, stairs (workplace access domain) and walking (workplace access domain) (Fig. 1). Of the other barriers in these sections, the most commonly reported barriers were related to driving, walking to work, and using public transportation, with frequencies ranging from 10% to 23%. The ‘Completing Job Activities’ domain had 19 items that were reported by at least 25% of the respondents (See Fig. 2). The most frequently reported barriers in this domain were prolonged sitting (55%); standing or being on feet too long (54%); bending, kneeling, squatting, or picking things up from low places (52%); and getting up and down from sitting (48%). In terms of the ‘Relationships with People at Work,’ ‘Working Conditions and Company Policies’, and ‘Job Career and Home Life’, 7 items were reported by at least 25% of participants: feeling self-conscious about your health condition, limitations, or appearance; being pleasant and upbeat with others when in pain or tired; feeling the need to hide your health condition from others; being afraid or hesitant to ask for a job accommodation; getting household work and/or shopping done; considering what work you would do if you needed or wanted to change jobs; and caring for yourself, such as taking medications, getting rest, proper diet and exercise.

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Fig. 2

WES-RC sections 1 and 2: Getting ready for and traveling to and from or for work and workplace access.

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Fig. 3

WES-RC section 3: Completing job activities.

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Fig. 4

WES-RC sections 5, 6, and 7: Relationships with people at work, working conditions and company policies, and job, career, and home life.

When asked to check the three most ‘bothersome’ barriers, no single barrier was reported by more than 25% of participants. For the 1st most bothersome barrier, ‘standing or being on feet too long’ and ‘prolonged sitting’ were the most commonly reported barriers, with 21 and 18 participants reporting the barrier, respectively. The remaining barriers were reported by 1 to 6 participants as the first major barrier, with ‘getting out of bed’ and stairs scored as the 1st most bothersome barrier by 6 participants. For the 2nd most bothersome barrier, the item pertaining to ‘bending, kneeling, squatting, or picking things up from a low place’ was reported by 11 participants. ‘Standing and being on feet too long’ and ‘prolonged sitting’ were reported by 9 participants as was ‘lifting and carrying objects’. The other items ranged from 1–5 participants indicating the barrier was bothersome for them. In terms of the 3rd most bothersome barrier, ‘getting housework or errands done’; ‘caring for yourself, such as taking medications’; and ‘getting rest’, ‘proper diet and exercise’, and ‘changing careers’ were the three top barriers reported by 9, 7, and 6 participants.

Through characterizing responses on the WES-RC we gain important insights into the types of challenges people with arthritis and rheumatic conditions experience in relation to concerns about maintaining employment. First, it was notable that almost all items on the WES-RC were noted as a barrier by at least one person, with the majority of items reported by at least ten people. In terms of the most bothersome barriers, physical functioning (i.e., standing for long periods of time; prolonged sitting; and bending, kneeling, squatting, and picking things up) were noted as the first or second most bothersome barrier. For the third most bothersome barrier, items pertaining to personal roles were noted (i.e., housework or errands, caring for oneself, and changing careers).

The fact that almost all the items on the WES-RC were noted as a barrier shows that people with arthritis and rheumatic conditions at risk of work loss experience diverse portfolios of barriers and challenges, requiring tailored interventions. The WES-RC is a tool that captures the breadth of barriers and can help facilitate directed conversations with health care professionals [14]. This approach aligns with the recent research showing that a personalized approach to medicine optimizes outcomes rather than generic treatment patterns [15].

As expected, the most frequently reported symptoms were pain and fatigue. These are commonly occurring symptoms with rheumatic conditions and are related to work limitations [16]. Anxiety and poor sleep were also reported by more than 25% of the sample, not surprisingly, as these systems coincide with pain and fatigue and are common among people with rheumatic conditions [17]. It is possible the items on the WES-RC could also be relevant for other chronic conditions, though rheumatic conditions may also have unique features such as rheumatic nodules, skin lesions, and uveitis [18–20].

Notably, many of the most commonly reported barriers pertained to physical movement such as standing for prolonged times, sitting for prolonged times, carrying objects, stairs, squatting and kneeling, and getting up and down from sitting. These types of barriers can be addressed by many health providers, in particular occupational and physical therapists. Possible solutions could involve timed position changes, use of chairs or stools for standing breaks, stretching, carrying objects close to one’s body, using carts or rolled bags to carry objects, or arranging shipments of heavy material. Other providers, such as nurse practitioners, could also suggest solutions to these types of recommendations. Importantly, solutions to these barriers typically involve movement strategies, not necessarily costly equipment or resources. It is worth noting the most frequently reported barriers in the “Work It” study did differ somewhat when compared to people with systemic sclerosis [20]. These differences can reflect the widely varied samples; however, the ability of the WES-RC to identify barriers appeared to be relevant in both studies.

The WES-RC tool guides respondents to identify the top three most “bothersome” barriers. The intent of this approach is to prioritize barriers and identify three barriers that people would be interested in changing. In this sample, the most bothersome barriers were highly varied and individualized. However, it was notable that physical barriers were the most prominent bothersome barriers: ‘standing or being on feet too long’, ‘prolonged sitting’, ‘getting out of bed’ and ‘stairs’. Factors related to personal and social roles were the most frequently reported as the 3rd most bothersome barrier. This finding shows the importance of considering physical as well as personal and social activities for employed people with arthritis, highlighting the importance of work-life balance and home and family needs as well as work factors. Lastly, some individuals indicated an interest in exploring a new job given the challenges they were having with their current job, indicating a need for a broad interdisciplinary team to support people who are at risk of work disability [21, 22].

Assisting individuals at risk of job loss to overcome the difficulties they encounter while participating in their work activities due to their health conditions is a major intervention area for OTs and PTs [20, 21]. Occupational and physical therapists report that delivering services and interventions to people with arthritis, specifically for work-related limitations and disability, is within their scope of practice [2, 21]. However, clinicians report needing supports to provide solutions to the wide array of barriers that may be experienced by people with arthritis at risk of work disability. This concern is understandable as each barrier may have a specific solution and it is clear that a wide range of barriers is likely to be experienced.

There are a few limitations of this study that are noteworthy. First, the majority of participants were in managerial and administrative jobs; jobs in the labor workforce may have a very different presentation in terms of work barriers. Second, the sample in the “Work It” study was educated. Vulnerable populations may experience different barriers to employment and may need different supports to sustain employment. Third, the data were collected in the context of a clinical trial and may not generalize to actual clinical practice.

Despite these limitations, this study provides important empirical evidence to the field of arthritis work disability. Our study is the first study that comprehensively describes the types of barriers individuals with arthritis and rheumatic conditions who are at risk of work disability have and provides insights into the supports and interventions that may be needed to sustain employment.

5 Conclusion

The WES-RC is a useful tool to help people with arthritis who experience difficulties related to work activities identify and prioritize individual challenges and barriers. The checklist tool can be used to identify a breadth of factors across different job contexts and physical, social and emotional needs. More research is needed to understand use of the tool in clinical practice as well as the utility of the tool for underrepresented groups and people working in manual labor jobs.

Ethical approval

The study was approved by the Boston University Institutional Review Board (IRB) (Jan 2014, IRB approval no. 90RT5009-01).

Informed consent

Not applicable as secondary data was used.

Conflict of interest

No conflict of interest was declared for any of the authors.