Job retention vocational rehabilitation for employed people with inflammatory arthritis (WORK-IA): a feasibility randomized controlled trial

Work problems are common in people with inflammatory arthritis. A third of employed people with rheumatoid arthritis (RA) stop working within three years of diagnosis due to arthritis (i.e. become work disabled) and 50% within 10 years [1]. Before this, people experience work instability, i.e. a mismatch between abilities and job demands which threatens employment [2]. This is associated with increased: absenteeism, as employed people with RA average 40 days sick leave per year compared to the 6.5 days United Kingdom (UK) average [1]; and presenteeism (i.e. reduced at-work productivity), with 24% of working time lost due to health problems [3]. Once unemployed, people with RA are unlikely to return to work [4]. Many factors influence work instability and disability including: greater pain, hand pain and fatigue; unadapted work environments and equipment; physically demanding jobs; poor work self-efficacy; job strain; and limited use of self-management strategies [4–8]. Job retention vocational rehabilitation (VR) has the potential to prevent or postpone work disability through modifying such factors. For example, those with workplace ergonomic modifications are 2.5 times less likely to stop work [6]. VR should be provided early, when work instability develops. However, many with arthritis lack access to VR.

A recent systematic review identified only two successful randomized controlled trials (RCTs) of job retention VR in arthritis [9]. These demonstrated: at 4.5 years, significant reductions in job loss (n = 242) [10]; and at six months, improvements in work instability, work satisfaction, pain and self-perceived ability to manage work (n = 32) [11]. Allaire et al. [10] evaluated a brief (three hour) intervention delivered by rehabilitation counsellors in the United States of America (USA), including work assessment and problem-solving participants’ priority difficulties. It is unclear if similar results would occur in the UK, with a different social security system, employment law and rehabilitation services. Macedo et al. [11], in a UK study, evaluated a comprehensive functional, work and psychosocial assessment, followed by six to eight sessions (30–120 min each) of individualised VR and comprehensive occupational therapy, including a group patient education programme. The drive for efficiency in the UK National Health Service (NHS) means many therapy services now provide brief interventions and group education provision is patchy. Thus a longer intervention may not be feasible. Neither study measured effects on absenteeism or presenteeism. These findings suggest brief job retention VR, based on that developed in the USA [10], delivered by occupational therapists with job retention VR training as part of Rheumatology NHS services, could be effective in the UK.

The aims of this study were to determine the feasibility of conducting a full RCT of job retention VR for employed people with inflammatory arthritis, specifically RA, undifferentiated inflammatory arthritis (IA) and psoriatic arthritis (PsA), as these are common conditions seen in Rheumatology departments. We investigated: screening and recruitment processes, study uptake, barriers to participation and retention rates; treatment fidelity; feasibility of assessment methods (proportion of missing data); the most feasible primary work outcome measure (time to job loss; employment status; absenteeism; or presenteeism); estimate a sample size for a definitive RCT; proof of principle by describing any changes in work and health outcomes; and the feasibility of Rheumatology occupational therapists delivering the VR.

This feasibility trial demonstrated job retention VR was credible, acceptable and deliverable to people with RA, PsA or IA. The findings indicate VR may reduce risk of job loss and improve productivity, confidence managing arthritis at work, physical ability, pain and perceived health. The control group remained largely unchanged. Results should be interpreted with caution as this was a feasibility trial, with small numbers and we did not therefore conduct inferential testing.

We also conducted interviews with participants and the occupational therapists to investigate their views of VR and the work advice provided [30, 31]. Intervention group participants valued the VR, particularly the training in work-based pain and fatigue self-management, joint protection, pacing, ergonomic and job adaptations/ accommodations advice. They reported: relief from discussing work problems with the occupational therapists; making behavioural adaptations at work; and improved coping skills [30]. In contrast, the control group discussed the continuing negative impact of arthritis on their work and feeling anxious about continuing working in future. Most participants in both groups had either not read the self-help work information or considered it had little impact [30]. The occupational therapists considered: the VR was beneficial for patients; and they could now provide a more comprehensive and individualised VR service [31].

The positive quantitative and qualitative findings suggest this VR intervention is promising. Healthy work has positive health benefits [32, 33]. People with health conditions who lose their job can struggle to get back to work, have financial difficulties, reduced retirement pensions, loss of positive psychological and social support from working, reduced wellbeing and worse health. Employers lose valuable skills and health services bear additional costs [34]. Forced retirement at 65 years of age no longer exists, the UK state pension age is rising and many people will need to work for longer. Initiatives supporting helping people with arthritis stay in work for longer are of benefit to both employees and employers. Direct VR averaged under four hours and the total cost was £135/ participant (including indirect VR). If job retention VR is proven effective in an RCT, this is a relatively low cost for a potentially large saving to people with arthritis, the NHS, employers and society. In future, employer insurance could potentially pay for such services from the NHS.

The study built on previous successful job retention VR research [10], whilst making VR pragmatic and deliverable in a UK NHS setting. The intervention was individualised, flexible and spread over several months to allow participants time to make changes between sessions and reduce the impact of taking time out of work. The resource use questionnaire identified how frequently many patients have to attend other appointments, highlighting the need for flexible VR and minimising disruption to patients’ work schedules.

Whilst workplace visits are beneficial [35], we decided to make them optional as these can only be undertaken if the person has disclosed their condition to their employer and agrees to them. Accordingly, the benefits of disclosure, employer liaison and workplace visits were discussed during VR, as relevant. Only three work visits were undertaken. Most participants either did not want a workplace visit, or felt confident to address job accommodation needs with employers and a visit was not essential, which also helped reduce costs. Relatively few participants agreed to employer contact for interviews. We had anticipated higher levels of workplace engagement as national guidelines recommend a workplace component [36]. The occupational therapists delivered VR in less than the planned time and budget, with results indicating improvements in outcomes. Accordingly, providing job retention VR in these Rheumatology occupational therapy services was feasible. The control group only received written advice (reflective of that provided to many with arthritis). As no or only small effects were seen in work and health outcomes in the control group, written advice was an appropriate control intervention.

Of the candidate primary outcome measures, the absenteeism measure (monthly calendar) provided detailed data but completion rates were lower than for presenteeism and had too high a responder burden. Three monthly self-report of sick leave days (with average number of days normally worked per week) would be less onerous and could lead to better response rates. The WLQ and RA-WIS presenteeism measures are considered the best options. The Outcome Measurement in RA Clinical Trials (OMERACT) Work Group previously had identified the WLQ, WALS and RA-WIS as presenteeism measures [37, 38]. However, subsequently they determined the RA-WIS is not a presenteeism measure, although still important as a prognostic measure [39], as scores >11 are predictive of future reduction in work hours and >13 of disability leave of absence [39]. Accordingly, the WLQ is the most applicable primary outcome for an RCT. Presenteeism has the greatest impact on costs for people with RA [40], confirming the relevance of this. Sample sizes of 120 to 140 would be required for a definitive RCT with 90% power, two-sided 5% significance level and allowing for a 20% loss to follow-up, using published data on minimum clinically important differences for these presenteeism outcomes [21, 41, 42] and using the standard deviations observed in this feasibility trial.

Only 20% of people with RA consider they receive sufficient information and practical support about employment issues from their Rheumatology service [1]. Many employees with arthritis are unaware of job retention VR services available and provision of these is patchy in the UK. VR is currently available from: occupational health departments, usually only available in larger organisations, but 60% of employees work for small to medium sized enterprises; the “Fit for Work Service,” although referral to an occupational health professional is made only when an employee has been off sick for four weeks or more (before then self-help internet advice and telephone support are available) [43]; the Access to Work scheme, which the person applies for themselves, can provide grants for job accommodations (e.g. transport, equipment at work) [44]; and Job Centre Disability Employment Advisors, although services are primarily for the unemployed. NHS occupational therapists, with additional VR training, are well-placed to provide early job retention VR. Occupational analysis and therapeutic interventions in the workplace are a core part of occupational therapy practice [45]. Employed people with inflammatory arthritis experiencing work problems, can be readily identified when patients attend Rheumatology out-patients and referrals made to occupational therapy. NHS-based VR means it is also available to those who have not disclosed or do not want employer contact. This job retention VR could also be applicable for a wider range of rheumatological conditions.

During the study, some research facilitators highlighted patients, particularly in areas with higher social deprivation and in precarious employment, expressed concerns about taking time out of work and/ or did not want VR, influencing their non-participation. The British Society of Rheumatology is now supporting training for Rheumatology teams to have “work conversations” with patients to promote the importance of staying working and obtaining work advice. In a future trial, ensuring teams have training in, and implement work conversations, could prime patients to perceive VR as important to receive.

There were limitations in this study. The two groups differed in occupational groupings and, in a definitive RCT, trial stratification by occupational group (levels 1 to 4) would reduce this disparity. The recruitment time was nearly half that planned, partly due to the time obtaining R&D approvals. The NHS Health Research Authority has since streamlined approvals processes, with targets for completions and recruitment. Our recruitment strategy was screening in two Rheumatology clinics per week. However, limited research facilitator availability caused delays in sites starting, periods of no screening and early site closure. Only 10% of patients screened were randomised into the study. This was however, consistent with pre-trial predictions. A two-week audit before the trial at one site identified 25% of Rheumatology out-patients were employed people with RA, PsA or IA. Studies evaluating RA-WIS scores in employed people with RA identified 34 to 69% had scores ≥10%, i.e. moderate to high risk of work disability [11, 46–49]. We estimated nine to 18% of Rheumatology out-patients could meet key eligibility criteria, but that the other criteria and unwillingness to participate would reduce recruitment to 10% or less of out-patients.

Research facilitators had problems contacting up to 20% of those identified to complete screening or consent. Research facilitators worked only during the day and often only had patients’ home landline telephone numbers and not work/ mobile telephone numbers and e-mail addresses. This prevented contacting employed patients in the evenings. It is clearly important to ensure a range of contact details are obtained at the point of first contact with potential participants. In consequence, in a future trial, employing a research fellow, working flexibly into some evenings, would assist contacting patients outside normal work hours. The research fellow can then complete screening and consent by telephone with patients, ensure baseline questionnaires are sent out/returned and patients randomised (subject to patients’ permission for contact details to be forwarded). When research facilitators are unavailable to complete screening and recruitment, a research fellow can also complete study procedures. To increase numbers of people with RA, PsA or IA referred for screening, working age/ employed patients could be identified by healthcare team members/ research facilitators from department databases, medical and therapy notes and in therapy departments. Such patients could be mailed invitation packs by research facilitators, with interested patients returning a reply form to the research fellow who completes study procedures.

Whilst an 80% retention rate is suggested as near the limit of validity for RCTs [50], our 20% attrition was similar to other job retention VR trials [10, 51] and other RA rehabilitation trials e.g. [52, 53]. This retention rate may reflect the more adherent, motivated group of people choosing to participate and willing to commit the time, which arguably reflects the situation in every trial. The trial manager contacted participants by telephone in the evenings to give questionnaire reminders to promote retention. A research fellow could also contact participants, day and evenings, to assist questionnaire completion and obtain a minimal data set, when necessary. Additional retention strategies could be considered, such as advance postcards and text reminders indicating questionnaires will be sent shortly, a second questionnaire reminder and using financial rewards or incentives [54, 55]. We had many measures in the questionnaire, as an aim was to identify the most applicable primary work outcome measure. Accordingly, responder burden would be reduced in a definitive trial, which may encourage better completion.

The findings from this study suggest job retention VR provided by NHS occupational therapists with VR training is credible, acceptable, deliverable and promising for employed people with arthritis with concerns about continuing to work in future because of their condition. The finding regarding screening and recruitment suggest recruitment could be challenging and requires additional research fellow support. Consideration needs to be given to the number needing to be screened (around 1350) to achieve the recruitment target, the number of sites and length of recruitment period required to achieve the target. There is a need for a definitive trial of this brief job retention VR in the UK, with the caveat of ensuring sufficient funding for out-of-hours and remote screening, recruitment and retention support to ensure timely recruitment and maximised response rates.