METHODS

The study was undertaken between March 1999 and June 2001. Patients participated in a multicentre randomised controlled trial in which the cost–effectiveness of a multidisciplinary vocational rehabilitation programme was compared with the normal outpatient care initiated by the treating rheumatologist.

The satisfaction study involved only those patients attending the multidisciplinary job retention vocational rehabilitation programme at the department of rheumatology, Leiden University Medical Centre, during this period. The programme had been functioning for a year before the trial started. At the time the study was conducted, the programme was only available for patients participating in the trial, as its capacity was limited.

The satisfaction study comprised the completion by the patients of a single questionnaire concerning various aspects of the programme, and a structured telephone interview with the occupational physicians involved in their vocational guidance.

The medical ethics committees of the hospitals involved approved the randomised clinical trial (including the satisfaction study).

Patients

Patients were eligible for enrolment in the randomised clinical trial if they had a chronic rheumatic disease with arthritis of one or more joints (rheumatoid arthritis or systemic lupus erythematosus (SLE), according to the American Rheumatism Association (ARA) classification criteria,^20,21 ankylosing spondylitis according to the modified New York classification criteria,²² or reactive arthritis, psoriatic arthritis, or scleroderma). All patients perceived challenges in maintaining their jobs and were highly motivated to remain in or return to the workforce. Patients were either still working or had only recently been on sick leave (for less than one year). Allocation to either the vocational rehabilitation programme or the usual type of care was determined by randomisation. Patients were referred for screening for eligibility for the trial by their treating rheumatologist.

The multidisciplinary vocational rehabilitation programme

A multidisciplinary team—involving a rheumatologist, a social worker, a physical therapist, an occupational therapist, and a psychologist—ran the vocational rehabilitation programme. An occupational physician who was linked to the occupational health service of the Leiden University Medical Centre was also connected to the team. This occupational physician was not involved in the guidance of individual patients but had a general advisory role, being present only at the multidisciplinary team conferences. The organisation of the programme was in the hands of a coordinator (a social worker, JB, or a physical therapist, FvdG). All patients made at least two visits to the programme.

After enrolment, a standardised letter confirming the patient’s participation and an information leaflet about the programme were sent by mail to the occupational physician involved in the guidance of the patient. All occupational physicians were invited to contact the coordinator of the team to exchange information or to join multidisciplinary team conferences about their patient. Depending on the company for which the patients worked, these occupational physicians were linked to various different occupational health services. However, according to Dutch law, the occupational physicians were only informed about their patient’s participation in the programme if the patient had given written informed consent.²³

The rheumatologist and the coordinator first carried out a systematic assessment. The assessment by the rheumatologist consisted of a history and physical examination, and included an evaluation of disease activity and joint destruction, and the presence of extra-articular manifestations or comorbidity. The assessment by the coordinator comprised a structured interview concerning the patient’s education and previous jobs, and a systematic record of the problems encountered in the current work environment, using a list of potential challenges. The patient’s psychosocial situation was also recorded.

Within two weeks after the initial assessment, a multidisciplinary team conference was held, at which all members of the team and the advisory occupational physician were present. During the conference, the patients’ health problems, the challenges in remaining at work, and the development of individualised solutions were discussed.^24,25 If necessary, additional team members were asked to see the patient in order to gather more information about specific aspects of the work situation. Depending on the specific problems of the individual patient, the intervention further consisted of counselling, guidance, or treatment (for example, the identification of resources for adapting the work environment or the working hours, promotion of work self efficacy, referrals to other health professionals or adaptation of the medical treatment in consultation with the treating (referring) rheumatologist, exercise therapy, occupational therapy, functional training of relevant activities, or psychological treatment).

All information about the current disease characteristics and prognosis, the work situation, description of work problems, and the counselling or treatment options given by team members were listed in a final report, which was discussed with the patient by the team coordinator.

The final report was then sent to the rheumatologist who referred the patient, but was only sent to the occupational physician if the patient had given written informed consent. The total number of visits in connection with the vocational rehabilitation programme was at least two (assessments by rheumatologist and coordinator and discussion of the final report with the coordinator). The total duration of the intervention varied depending on the content of the individual guidance and treatment process, and lasted on average between four and 12 weeks.

Assessments

Patients’ sociodemographic variables and clinical data

The following data were recorded before the patient entered the programme: age, sex, diagnosis, disease duration, and education level (divided into three categories based on the Dutch school system, primary education 0–8 years, secondary education 9–16 years, and higher vocational education/university 17+years). Work history and current working situation were recorded using parts of a Dutch generic structured instrument—the vocational handicap questionnaire (VHQ)—which has previously been validated in chronically ill Dutch people.^26–28 Current occupation was grouped into four categories, each representing different levels and types of objective physical and mental demands at work.²⁹ For the description of problems encountered in the current work situation, the team coordinator’s records were used. Finally, the patients’ overall satisfaction with their current job was scored on a visual analogue scale (VAS, range 0–10; anchor on the left: not at all satisfied; anchor on the right: fully satisfied). The VAS was only filled in by those patients who had worked for at least a few days in the last month.

Patient satisfaction

The patient satisfaction questionnaire comprised 22 questions and was based on two multidimensional questionnaires. One questionnaire was designed to describe satisfaction with occupational rehabilitation in employees with low back problems,³⁰ and the other was developed and validated to measure satisfaction with multidisciplinary care in patients with rheumatoid arthritis.³¹ The final questionnaire comprised those domains of health care that have previously been found to be the most important according to the perception of quality of care by patients with rheumatoid arthritis.³² The seven different domains in the final questionnaire comprised 22 statements on the following: the usefulness of the given advice (n = 2), the interpersonal approach (n = 3), communication (n = 2), professional knowledge (n = 5), effectiveness (n = 2), quality of information (n = 3), coordination of care among team members (n = 2), and the quality of the final report (n = 3). The domains communication, interpersonal approach, professional knowledge, and usefulness of the advice given were derived from the back pain questionnaire. The domains effectiveness, quality of information, and coordination of care among team members were derived from the multidisciplinary care questionnaire. The questions on the quality of the final report were designed specifically for the present study. With each statement the patient was asked to agree or disagree using a five point Likert scale (1, totally agree to 5, totally disagree). Patients had the opportunity to give a written comment on each assertion in the questionnaire. In addition overall satisfaction with the vocational rehabilitation programme was measured on a rating scale (0–10 points: 0, not satisfied; 10, very satisfied). Patients were also asked if they would recommend the job retention vocational rehabilitation programme to others (yes or no).

Patients received the satisfaction questionnaire four to six weeks after termination of the programme. To prevent response bias, the questionnaire was filled in anonymously and sent back by mail to the principal investigator (PdB), who was not personally involved in the vocational rehabilitation programme.

Occupational physicians satisfaction

Six to 12 weeks after a patient had ended the vocational rehabilitation programme, the occupational physician from the occupational health service that was linked to the patient’s company was contacted by telephone for a structured interview by the principal investigator (PdB). This was done only if the patient had given written informed consent for the exchange of information. The interview comprised 28 questions on the following: the occupational physicians’ sociodemographic data (sex; in training or not), overall satisfaction with the written information concerning the vocational rehabilitation programme (n = 7), whether they had received and read the final report (n = 2), familiarity with the patient’s problems at work (n = 1), satisfaction with the specific information provided concerning diagnosis, prognosis, work situation, and psychosocial situation, and satisfaction with the advice/suggestions given by the team to address these problems (n = 15).

The occupational physicians were also asked if they would have wanted to join the team meetings (n = 1). Their general opinion about the initiative of a hospital based team actively passing on information about the work situation to the occupational physician was sought (n = 1), and they were asked about any suggestions for optimising the programme (n = 2). The average duration of the interview was 20 minutes.

Analysis and statistical methods

Data management was undertaken using the Project Manager software package, version 6.1 based on the Knowledge Man relational database system.³³ Data were automatically and integrally converted to SPSS 10 for Windows for statistical analysis. Measures with a gaussian distribution are expressed as mean (SD); otherwise, medians and ranges are presented.

RESULTS

Patients

In all, 140 patients were enrolled in the randomised controlled trial. Using stratified randomisation by rheumatic disease and hospital, 75 were assigned to the vocational rehabilitation programme. Sixty five of these paid at least one visit to the hospital in connection with the programme and were included in the satisfaction study. In table 1, characteristics of the 65 participants in the programme are presented. Their median age was 45 years (range 21 to 57), and 37 (57%) were female. The median disease duration was 16 months (range 0 to 158) and half the patients had rheumatoid arthritis. Fifty (77%) of the patients had secondary education or less, which appeared to be a representative sample given the distribution in a nationwide sample of Dutch patients with rheumatoid arthritis³⁴ and the Dutch population.³⁵ Thirty one of the patients (48%) reported mentally demanding or mixed mentally and physically demanding work, 18 (28%) reported light physical demands, and 16 (24%) reported heavy physical demands at work. Thirty four patients (52%) were on sick leave because of their rheumatic disease. In these patients the mean duration of sick leave was 16 weeks (range 1 to 52). Mean (SD) level of job satisfaction before participation in the vocational rehabilitation programme, as measured with a VAS, was 5.4 (2.5) (n = 51).

The vocational rehabilitation programme

The median number of visits in connection with the vocational rehabilitation programme was three (range one to six). The median number of health professionals involved was five (range two to six). After the initial assessment by the rheumatologist and the coordinator, the social worker was involved with 41 patients (63%), the occupational therapist with 50 (77%), the physical therapist with 48 (74%), and the psychologist with four (6%).

The self reported challenges in remaining at work are presented in table 2. The mean (SD) number of problems reported per patient was 5 (3). Pain and fatigue were the most cited disease related challenges. Overall, more than 30% of the patients reported challenges associated with specific labour conditions such as using grip force, carrying loads, standing, and exposure to climatic conditions such as cold, heat, and damp.

Patient satisfaction

Fifty nine (91%) of the 65 patients returned the satisfaction questionnaire. The results show that the aspects of care most highly rated were the interpersonal approach and the professional knowledge of the health professionals involved in the programme (table 3). Patients were least satisfied with the waiting time for the final report and the application of the advice given in the actual work situation. The mean satisfaction score was 7.3 (1.0). Eighty five patients (98%) said they would recommend the programme to other patients. Most additional written comments were confirmations of the answers on the Likert scales. None of the comments were about a lack of understanding of a question. These findings substantiate the feasibility of the questionnaire.

Occupational physician satisfaction

Fifty three patients (82%) gave permission to contact their occupational physician. We were able to interview 28 (53%) of these. Twenty five (47%) could not be interviewed for the following reasons: six had changed jobs, eight stated they did not know the patient well enough to answer the questions, six did not respond to our repeated telephone calls, one required reimbursement for participating in the interview, two found that the patients’ files were missing, and a further two could not be reached at all. Fifty per cent (n = 14) of the occupational physicians had been trained as such and had been working as occupational physicians for a median period of 6.2 years (range 1 to 22). Ten were in training to become occupational physicians, and four were general practitioners working as occupational physicians. These latter were not in training.

Occupational physicians’ satisfaction ratings are is presented in table 4. Overall satisfaction with the information provided was good. Almost all the occupational physicians stated that they thought it was a good initiative to pass on information from a hospital based vocational rehabilitation programme to the occupational health services. However, they found that the role of the occupational physician as a potential participant in the vocational rehabilitation programme should be explained more clearly in the information leaflet and letter provided at the start of the intervention. They also thought that communication should take place at an even earlier stage of the guidance process in cases of work problems.

All but one of the occupational physicians were familiar with the patient’s problems at work. Most (n = 23; 82%) had received the final report. The number of occupational physicians agreeing with the statement that the final report contained sufficient information about the disease and prognosis was 16 (57%); about the work situation and the challenges in maintaining work, 11 (39%); and about the psychosocial situation of the patient, 12 (43%).

According to 21 (75%) of the occupational physicians, the information on the disease characteristics and prognosis was helpful. Information about the work and psychosocial situation was found to be sufficient by 16 (57%), but only a small number thought that it was of additional value in providing guidance. Several of the occupational physicians felt that if the team members could have visited the workplace, the practical application of the advice given might have improved.

DISCUSSION

Our study uncovered several areas of satisfaction or dissatisfaction with a job retention vocational rehabilitation programme for patients with chronic rheumatic diseases. This information may be helpful in improving the content and organisation of similar programmes that are executed in the complex context of vocational guidance. Overall, satisfaction with the programme was good. Points that needed attention as indicated by the patients were the waiting time for the final report, and the application of the given advice or potential solutions in the actual work situation. The occupational physicians felt that their role as potential participants in the vocational rehabilitation process should be explained more clearly, and there should be more communication at earlier phases of the vocational guidance.

This study is the first to examine satisfaction ratings by patients as well as by their occupational physicians in relation to a multidisciplinary job retention vocational rehabilitation programme in a health care setting.

A limitation of the study was the lack of any measurement of the patients’ expectations before the intervention, so we cannot relate the satisfaction scores to individual levels or needs.³⁶ Moreover, selection bias may play a role in the interpretation of the levels of satisfaction. The patients described in this study were a highly motivated group who had high hopes of remaining at work or returning to the workforce. It is not clear whether this selection bias influences satisfaction levels positively or negatively, but nevertheless the results cannot be generalised to the total population of rheumatic patients taking part in job retention programmes.

Selection bias might also have played a role in the occupational physicians’ satisfaction results, as we were able to interview only 53% of the physicians involved. This relatively low response rate did, however, appear to be related mainly to the organisation of occupational health care services rather than to the quality of the vocational rehabilitation programme.

The patient satisfaction results obtained in our study are in general slightly less positive than those obtained in a recent study by Allaire et al. In that study, the investigators measured the patients’ satisfaction with and the perceived helpfulness of a vocational rehabilitation programme run in a community setting in the USA.³⁷ In all, 242 employed patients with rheumatoid arthritis, osteoarthritis, or SLE, who perceived they were at risk for work disability, were enrolled in the trial. Using stratified randomisation by age, type of rheumatic disease, and location, 122 subjects were assigned to the experimental group. They received job retention vocational rehabilitation services—for example, assessment of work related problems and development of solutions—during two meetings with a rehabilitation counsellor, each lasting 1.5 hours. Satisfaction and perceived helpfulness were measured using 1–10 scales (10 = very helpful or satisfied). Median satisfaction score was 10 (interquartile range, 1.0) and median helpfulness was scored 9 (interquartile range, 2.0).

As the setting of the interventions and the process of vocational guidance vary greatly between the USA and the Netherlands (mostly because of differences in the occupational health care and social security systems), a direct comparison of the results of the study by Allaire and the present study is difficult.

In our study, we also measured satisfaction on the part of the occupational physicians—who in the Dutch situation may be considered as an additional group of clients of the programme. Almost all occupational physicians stated it was a good initiative to pass on information from within a hospital based vocational rehabilitation programme to the occupational health services. However, according to the occupational physicians their role as potential participants in the vocational rehabilitation process should be explained more clearly. In our study, the occupational physicians were not a part of the vocational rehabilitation team but were asked to collaborate with the team by keeping in contact by mail or phone. However, most of them did not feel sufficiently involved in the process, or appeared not to be aware of the working methods of the programme. Our study substantiates the results of earlier ones in which it was shown that there is a need for better job descriptions and improved cooperation between health professionals working in vocational rehabilitation.^38,39 Within the field of rheumatology, a perceived lack of clarity about mutual tasks has been presented before as a major obstacle in communication between Dutch rheumatologists and occupational physicians.⁴⁰ This highlights a limitation of the intervention employed in the present study. Because the setting of the intervention was hospital based, communication was confined to areas where occupational physicians might have been able to provide additional information. The intervention as described in the present study was therefore predominantly concerned with the one sided perspective of the patient-perceived challenges of remaining at work. Extended cooperation with occupational physicians might improve the analysis of the work problems and the practical application of advice and solutions provided by the team members. However, our results indicate that contacting occupational physicians can be difficult or may be considered undesirable by the patient in some cases. The fact that many occupational physicians wished to play a more active role is nevertheless a positive starting point for improving the vocational guidance process.

In contrast to most published reports on vocational rehabilitation programmes, which have focused on patients with permanent work disability or job loss, the focus of our programme was on patients who were still employed and on the identification of challenges in their current workplace. Only a few previous studies have addressed these issues and our results are in general agreement with their findings.^41–44 Disease related challenges that were most often cited in our study were pain and fatigue, while more than 30% of the patients reported challenges that were associated with specific labour conditions such as the use of hand grip, load carrying, standing, and exposure to climatological circumstances like cold, heat, and damp.

Now that we are aware of the challenges faced by patients with chronic rheumatic diseases in their workplace, and the perceived bottlenecks in the process of vocational rehabilitation, the results of this study will help us to improve our own and similar vocational rehabilitation programmes for patients with rheumatic diseases. To determine the exact place of such programmes in the management of such patients we need greater knowledge about their efficacy in different settings. Apart from the results of some uncontrolled studies,¹⁷ the preliminary results of a randomised controlled trial⁴⁵ describing the efficacy of a job retention vocational rehabilitation service show promise for the future. The results of the present randomised clinical trial are about to be published.