If you don't remember your password, you can reset it by entering your email address and clicking the Reset Password button. You will then receive an email that contains a secure link for resetting your password
If the address matches a valid account an email will be sent to __email__ with instructions for resetting your password
HAN University of Applied Sciences, Department Occupational Health, Prevention and Reintegration, Nijmegen, The NetherlandsRadboud University Nijmegen Medical Centre, Scientific Institute for Quality of Healthcare, Nijmegen, The Netherlands
Minis MA, Cup EH, Heerkens YF, Engels JA, van Engelen BG, Oostendorp RA. Exploring employment in consultation reports of patients with neuromuscular diseases.
To explore consultation reports for patient and employment characteristics and recommendations on employment regarding patients with neuromuscular diseases (NMDs).
Retrospective study of multidisciplinary reports.
An outpatient neuromuscular clinic at a university hospital.
Reports (N=102) of patients with NMDs.
Based on one-off consultations by occupational therapists, physical therapists, and speech therapists and a multidisciplinary meeting, recommendations were developed regarding therapy content and volume in primary care or rehabilitation settings.
Main Outcome Measures
A checklist has been developed to examine employment characteristics. A general questionnaire has been used including demographic variables and data on employment.
Of the 102 reports available, 86 were included for analysis. Sixty-nine reports contained information on employment. Thirty-seven patients (43%) with NMD were employed, most in white-collar or moderately strenuous jobs. Of the 37 employed patients, 28 (76%) worked using adaptations. Thirty-two (87%) had employment problems; of these, 15 (40%) needed improvement in 1 or more environmental factors. Twenty patients (54%) needed advice regarding participation in employment, of whom 19 were referred to primary care or rehabilitation settings for treatment to enhance employment participation.
Eighty percent of the included consultation reports contained information on employment. Less than half the patients with NMD were employed, most in office-related jobs, using some kind of adaptations. Nineteen of 20 patients who agreed to recommendations regarding therapy were adequately referred by occupational therapists and physical therapists for treatment of employment problems.
of factors influencing employment of patients with NMD, few studies were found in which patients with a slowly progressive NMD were the subject of investigation. In addition to factors affecting employment of healthy people, such as age, sex, and education, the type of NMD also influenced possibilities for employment.
of 591 patients with NMD, employment status varied from 47.8% for patients with myotonic dystrophy, to 63.7% for patients with hereditary motor and sensory neuropathy type I, to 70.3% for patients with facioscapulohumeral muscular dystrophy. Early identification of the aforementioned factors is important in facilitating continued engagement in employment activities for patients with a progressive disease such as NMD. Because of the slow progressive deterioration, patients with NMD need regular support (eg, by a job coach or case manager) to maintain employment participation.
Based on their professional domain, occupational therapists, physical therapists, and speech therapists who support chronically ill patients in their daily performance may play a role in preventing job loss.
Generally, patients with NMDs visit neurologists for medical diagnoses and treatment, not primarily for participation problems regarding employment. After a visit to the neurologist, a group of patients with NMD were consecutively referred to a specialized team of occupational therapists, physical therapists, and speech therapists for a one-off consultation.
Based on the results of these consultations and a multidisciplinary meeting in which a neurologist, a rehabilitation physician, and the therapists participated, treatment recommendations were formulated specifying content (including frequency) by occupational therapy (OT), physical therapy (PT), and speech therapy (ST) in primary care or rehabilitation settings.
There is a lack of knowledge regarding the contribution of occupational therapists, physical therapists, and speech therapists in optimizing employment participation of patients with NMDs. The aim of this study was to explore the consultation reports for patient characteristics and employment characteristics, as well as frequency and content of recommendations on employment, of patients with NMDs.
Design and Setting
A retrospective analysis was performed using multidisciplinary reports of 102 consecutive patients with NMD visiting the Neuromuscular Centre Nijmegen from December 2002 until June 2003. Inclusion criteria were (1) probable or definite NMD according to the medical records; (2) age 18 years or older; and (3) sufficient command of the Dutch language.
and of patients older than 64 years were excluded from analyses.
The multidisciplinary reports consisted of 5 sections: a semistructured general section containing diagnosis, demographic data, marital status, data on education, leisure activities, work status, and presence of personal equipment or adaptations; 3 specific sections with findings of OT, PT, and ST consultations; and a fifth section with general conclusions and recommendations for treatment (including volume) based on the one-off consultations and multidisciplinary meetings.
A general questionnaire including demographic variables (age, sex, marital status, education) and information related to the disease, such as medical diagnosis and duration of complaints, was used. Specific items of the general questionnaire related to paid employment were as follows: employment status (yes/no), source of income (job income, allowance, both job income and allowance, or no personal income), weekly job hours (8–12h, 13–20h, 21–40h), monthly income (<€1000, €1000–€1500, €1500–€2000, >€2000, does not know or wants to keep it private), weekly hours of sick leave (4–12h, 13–20h, 21–40h), percentage working disability (8%–50%, 51%–80%, 81%–100%), and patient status currently under review for disability percentage assessment.
For analysis of employment problems, the multidisciplinary reports were made anonymous and numbered. For analysis of the reports, a checklist was developed. The first researcher (M.A.M.) analyzed all reports, and 2 other raters (Y.F.H. and R.A.O.) each rated half of the reports. Meetings were used to reach consensus for detailed exploration of employment problems. The procedure consisted of 6 steps:
Step 1: Selection of reports eligible for analysis.
Step 2: Exploration of the presence of information on employment in the different sections of the reports.
Step 3: Division of the reports into 2 groups: “not employed” patients and “employed” patients. Regarding patients who were not employed, reasons for unemployment were recorded. The reports on employed patients were checked in more detail; that is, they were examined to identify employment problems and type of job (office-related white-collar jobs, moderately strenuous jobs for patients with NMD such as nursing and teaching, and labor-intensive blue-collar jobs).
If patients worked under preconditions of the presence of adaptations, this was also registered.
Step 4: Examination of the reports pertaining to work-related environmental factors that needed improvement; that is, terms of employment, task content, working conditions, and social relationships at work.
Step 5: Examination of whether therapists made recommendations regarding the employment for patients with NMD. Patients' indications that recommendations were not yet necessary or their decisions to postpone them were also registered.
Step 6: Examination of the reports regarding recommendations for further treatment, patients' consent regarding these recommendations, and how many patients were referred accordingly.
The Medical Ethics Committee of the Radboud University Nijmegen Medical Centre in the Netherlands approved the research project in accordance with the Helsinki Declaration.
Percentage agreement regarding the presence of information on employment in the reports between M.A.M., Y.F.H., and R.A.O. was calculated. For the general questionnaire of the employed and not employed groups, descriptive data were presented. These descriptive data were tested for between-group differences regarding age, sex, marital status, education level, medical diagnosis, or duration of complaints with an unpaired t test for the continuous variable “age” and chi-square analyses for the nominal variables.
A P value of ≤.05 was considered statistically significant. If data were missing, patients were excluded from analyses. The variables with empty cells or only applicable for the employed were excluded from the table and described in the text. All statistical analyses were performed with the statistical package SPSS for Windows (Version 17.0).a
Of the 102 multidisciplinary reports of consecutively referred patients with NMDs, 86 were eligible for analysis. Sixteen reports were not eligible for analysis because of age (≥64y) or the progressive type of NMD such as amyotrophic lateral sclerosis (fig 1, step 1). Two consensus meetings between M.A.M., Y.F.H., and R.A.O. were necessary to reach 100% consensus about the presence of information on employment in 1 or more sections of the multidisciplinary reports.
The presence of work-related information was found in the general section of 69 multidisciplinary reports (80%), in 1 or more specific sections (OT section, 41%; PT section, 23%; ST section, 7%), or in the conclusion (8%) (fig 1, step 2). The reports eligible for analyses (n=86) showed that 37 patients (43%) were employed and wished to stay employed, and 49 (57%) were unemployed (fig 1, step 3).
The demographic data of the 86 patients included showed that the employed patients with NMD (n=37) were significantly younger, predominantly men, and more highly educated. No significant differences between the employed group and the unemployed group were found for marital status, medical diagnosis, and duration of complaints (table 1). Working hours and level of income and percentage disability for work differed significantly between the 2 groups. More than half of the employed patients worked 21 to 40 hours a week. Eight employed patients with NMD reported weekly hours of sick leave, and 3 patients were under review for disability percentage assessment.
Table 1Demographic Characteristics of Employed and Not Employed Patients With NMDs (n=86)
The unemployed group (n=49) comprised 29 patients (59%) on disability pension, 3 patients (6%) who wished to return to work, and 17 (35%) for whom no information was present in the reports for obvious reasons. They either were unable to work because of their illness, were not employed because of their age (>62y), and/or carried out their role as a housewife (see fig 1, step 3). As a result of her illness, 1 of the 3 patients who wished to return to work was changing her profession, pursuing a university education, and hoped to find a job. The second patient did not like having to rely on social benefits and still wanted to work. A reintegration agency was involved in helping him find a new job. The third patient was unemployed and was considering returning to work in a white-collar job.
Thirty-six of the 37 employed patients received work-related recommendations during the one-off consultations. Eighteen patients were employed in office-related jobs, 13 in moderately strenuous jobs, and 3 in labor-intensive jobs; for 3 the type of job was not specified. For 28 employed patients (76%), 1 or more adaptations at work were identified. In 32 (87%) of the 37 reports of the employed patients, work problems were present despite existing adaptations at work (fig 1, step 4). In 15 (40.5%) of these 37 reports, patients identified specific environmental problems; however, problems with social relationships at work were not mentioned (see fig 1, step 4). Twelve (32%) of the 37 patients with a work problem indicated no need for referral or indicated having solved their employment problems (fig 1, step 5). For 20 (54%) of the 37 patients, recommendations were made and consented. To further address these employment problems, 19 (51%) of the 37 patients were referred to an occupational therapist or other health professional (see fig 1, step 5). These 19 patients received specific recommendations 34 times in 1 or more sections of the multidisciplinary reports. Eight of these patients already in treatment by an occupational therapist (n=3) or other health professional (n=5) were additionally referred for their employment problems (fig 1, step 6). For 1 patient who had a work problem, no referral was made. The reason for that omission is not known.
Our main finding was that all 86 multidisciplinary reports contained information on employment. The percentage of patients with NMD at work (43%) was less than in a previous study
of patients with different NMDs, where on average 61% were employed. Previous findings that younger patients, men, and more highly educated patients with NMD are more likely to be employed are confirmed in the current study.
Employment status and working disability were adequately addressed by occupational therapists and physical therapists, indicating that they are more appropriately qualified than speech therapists to identify problems of patients with NMD at risk for working disability. This was also the case for patients with rheumatoid arthritis.
The general section, for which the information was gathered by the occupational therapist, and the OT section produced most of the information on employment, followed by the PT section and the ST section. This was probably because of the primary focus of the OT professional. Work is recognized as an important domain of OT, whereas the physical therapist is mainly focused on motor functioning and the speech therapist on speech and communication skills.
These findings indicate that participation restrictions in work are systematically integrated into one-off consultations, most often by occupational therapists. The fact that information on employment is effectively collected is no guarantee that recommendations are implemented. A follow-up study
of implementation of therapy recommendations showed variations in frequency and volume based on treatment settings. Further research is needed to monitor whether recommendations for referrals toward a primary care or rehabilitation setting aimed at enhancement of employment participation for patients with NMD were implemented effectively. More than 80% of the employed patients were working in white-collar or moderately strenuous jobs. In the literature, often a distinction is made only between white-collar and blue-collar jobs.
In our opinion, some jobs cannot be categorized as purely white-collar or blue-collar jobs. There are jobs such as nursing and teaching that might involve heavy lifting, require holding the arms up in elevated positions for longer periods, or require fine motor control but that cannot be categorized as blue collar. Hence, we added the category “relatively strenuous jobs” to determine how many patients with NMD were able to work in moderately physically demanding jobs. Indeed, a relatively large group did have a moderately physically demanding job in spite of the severe type of NMD. Less strenuous jobs were also positively related to employment in a group of 591 patients with NMD.
The presence and need for adaptations at work were mentioned in most reports on employed patients with NMD. Adaptations were obviously often a precondition for being able to work. During the one-off consultations, immediate recommendations were given to almost all patients. In nearly all reports, 1 or more work problems were recorded. Recommendations for further treatment given by occupational therapists, physical therapists, and speech therapists were accepted by more than half of the patients with NMD experiencing employment problems, indicating that a one-off consultation is fairly effective in efforts to maintain a job in case of a deteriorating NMD. The most prevalent adjustments included adaptations of working conditions, terms of employment, and task content, as seen in other studies
also found the presence or need for adaptations and adjustment of working hours, physical demands, and autonomy at work as a precondition for maintaining employment for patients with NMD. Because only 1 study
was found with these associations, the scientific level of evidence for these factors in our review was low. Our study revealed the same factors associated with employment, lending support to previous findings. Generally, it cannot be expected that all employment problems can be addressed in a one-off consultation; however, we found it surprising that none of the reports described the influence of social relationships and support at work. This factor deserves more attention because it is 1 of the 4 main work-related environmental factors that influence employment participation.
The general questionnaire used in this study included items on employment not addressed by the therapists, such as level of income and weekly hours employed. A low level of income can be an indicator of employment problems. The general questionnaire also contained 3 items to identify employment problems: percentage disability for work, hours of sick leave, and employment under review. For identification of employment facts and problems, the general questionnaire can be used as a checklist to pay attention to the various aspects during a one-off consultation.
This study was limited to only 1 setting, the outpatient clinic of a university hospital. A secondary analysis was performed with data originally collected to answer a different question—that is, to investigate referral patterns to occupational therapists, physical therapists, and speech therapists. These data were not collected to give information and recommendations about employment status and the need for referral regarding employment for patients with NMD.
Data purposefully collected to investigate the adequacy of one-off consultation for assessment of employment problems could have provided more rigorous and replicable data. Our intention was, however, to determine whether problems related to employment are given sufficient attention during a generic one-off consultation as a starting point for intervention.
The presence of information on employment was presented descriptively. Because of the small sample of 37 reports and even smaller samples of type of job, frequency of work problems, type of adaptations at work, and work-related recommendations, the estimated percentages have a margin of error that can rise to a maximum of 16%.
Based on our findings, we recommend the continuation of one-off consultations in the current manner, with emphasis on 4 questions addressing employment: (1) Does the patient have a job? (2) If the patient is not employed, does the patient want a job? (3) Are there concerns about employment? and (4) Does the patient need support by a health professional to address employment problems? Follow-up research is also recommended to investigate whether referral to allied health professionals leads to enhanced employment participation for patients with NMD.
Qualitative research is recommended to (1) provide more insight into the meaning of work for patients with NMD; (2) obtain more insight into the influence of social relationships and support at work; and (3) gain in-depth information on the changing ability of employed patients with NMD and their needs to stay at work. Until now, few qualitative studies have been performed to learn more about employment experiences of adults with NMD.
Eighty percent of the consultation reports contained information on employment. Less than half of the patients with NMD were employed, most in office-related or moderately strenuous jobs, using some kind of adaptation. Of the patients employed, a small proportion indicated they had not experienced employment problems, and a third claimed no need for recommendations or postponed the referral suggested. The remaining patients with employment problems, except 1, were adequately referred by occupational therapists and physical therapists for treatment of employment problems.
The work presented was financially supported by the HAN University of Applied Sciences, Nijmegen, The Netherlands, and a grant from the “ HBO Mobiliteitsfonds ,” The Hague, The Netherlands (grant no. PR0510-B ). The original study was supported with a grant from the College of Health Insurance , The Netherlands (DO-project 01223).
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.