How persons with a neuromuscular disease perceive employment participation: a qualitative study.

INTRODUCTION: A qualitative study was carried out to understand how people with a slow progressive adult type neuromuscular disease (NMD) perceive employment participation. METHODS: 16 paid employed persons with NMD were interviewed in open, in-depth interviews. Data were analyzed using the constant comparison method. RESULTS: Four themes were identified in the analyses: (1) Experiences regarding the meaning of work; (2) Solving problems oneself; (3) Reaching a turning point; and (4) Taking into account environmental aspects. Persons with NMD highlighted benefits of staying at work as well as the tension they felt how to shape decisions to handle progressive physical hindrances in job retention. This study shows how participants at work with NMD were challenged to keep up appearances at work and at home, the tension felt around when and if to disclose, the effect of their condition on colleagues and work reorganisation challenges. Participants experienced that disclosure did not always make things better. With increasing disability participants' focus shifted from the importance of assistive products towards considerate colleague, in particular superior's willingness in supporting job retention. CONCLUSIONS: Implications for health professionals might include awareness of the significant impact of changes in physical condition on employment. Timely communication and if appropriate referral to a health or occupational professional may empower employees with NMD to handle employment issues at a for themselves appropriate way. Assistive products and a supportive superior might enhance employment participation.

Exploring employment in consultation reports of patients with neuromuscular diseases.

OBJECTIVES: To explore consultation reports for patient and employment characteristics and recommendations on employment regarding patients with neuromuscular diseases (NMDs). DESIGN: Retrospective study of multidisciplinary reports. SETTING: An outpatient neuromuscular clinic at a university hospital. PARTICIPANTS: Reports (N=102) of patients with NMDs. INTERVENTIONS: 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. RESULTS: 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. CONCLUSIONS: 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.

Employment status of patients with neuromuscular diseases in relation to personal factors, fatigue and health status: a secondary analysis.

OBJECTIVE: To determine the number of employed people in a group of patients with neuromuscular diseases and in 3 separate subgroups (facioscapulo-humeral dystrophy, hereditary motor and sensory neuropathy, and myotonic dystrophy) to investigate any differences in employment status between the patient groups, and to identify factors related to employment status. DESIGN: Cross-sectional study. PATIENTS: A total of 591 patients with neuromuscular diseases participated in the study, 138 with facioscapulo-humeral dystrophy, 135 with hereditary motor and sensory neuropathy, and 318 with myotonic dystrophy. METHODS: Self-report questionnaires, the Checklist Individual Strength (CIS) and the Short Form-36 (SF-36). RESULTS: Of the patients with neuromuscular diseases in the study, 56.7% were employed. Younger age, being male, and higher education contributed significantly to employment status of the neuromuscular diseases group and the hereditary motor and sensory neuropathy and myotonic dystrophy subgroups. Significant between-group differences for employed vs not employed subjects were present in the total neuromuscular diseases group on all subscales of the CIS and SF-36. Factors related to employment status differed for the 3 neuromuscular diseases subgroups. CONCLUSION: More than half of the patients with neuromuscular diseases were employed. Patients with facioscapulo-humeral dystrophy and patients with hereditary motor and sensory neuropathy were more often employed than patients with myotonic dystrophy. Between-group analyses for differences in baseline factors revealed 11 significant factors related to employment. Multivariate logistic analyses revealed 6 factors contributing to employment for the group of patients with neuromuscular diseases.

Classification of employment factors according to the International Classification of Functioning, Disability and Health in patients with neuromuscular diseases: a systematic review.

PURPOSE: A systematic evaluation of the literature to identify health and contextual factors associated with employment in patients with neuromuscular diseases (NMD) and to perform a best evidence synthesis, taking into account the design of studies, methodological quality and the statistical significance of findings. METHOD: Publications were retrieved by a computerised search in medical and psychological databases. Two reviewers assessed titles and abstracts first and assessed the quality of the remaining full text publications independently as well. Of the residual publications, health and contextual factors associated with employment in patients with NMD were extracted. The factors found were included in a recently developed expanded International Classification of Functioning, Disability and Health scheme. RESULTS: Six hundred and sixty-two titles and abstracts were screened. The main reason to exclude a title and/or abstract was the absence of the study population selected: Facioscapulohumeral Muscular Dystrophy (FSHD), Hereditary Motor and Sensory Neuropathy (HMSN) & Myotonic Dystrophy (MD). Of the remaining 20 full-text publications, eight publications fulfilled the inclusion criteria: two repeated survey designs and six cross-sectional studies. Factor extraction resulted in 94 factors related to employment. Ten factors in five publications were indicative for an association with employment status: Disease related factors HMSN, MD & NMD in general), factors related to functions (physical functions, muscle power functions), general personal factors (age, gender and education), work related personal factors (type of occupation, and expressed interest in employment by patients with NMD). CONCLUSION: In the best evidence synthesis ten factors were indicative for an association with employment status in patients with NMD in five publications with good to excellent methodological quality.