Even after a follow-up of 7 years, the proportion of people with chronic back problems was high. The consequences for quality of life, labor force participation, and consumption of medical resources are clear. Further research is necessary to examine determinants and ways to prevent chronicity.
The present study analyses the actual occupational situation, vocational handicaps and past labour career of a group of about 1000 Dutch patients suffering from a neuromuscular disorder (NMD). On the basis of the likelihood of a substantial employment history and sufficient numbers of patients, four types of NMD were selected: dystrophia myotonica (DM), hereditary motor and sensory neuropathy (HMSN), spinal muscular atrophy (SMA) and myasthenia gravis (MG). Results show that a labour career is in reach of most NMD patients, even for those with severe limitations. It is concluded that physical limitations seem not to be decisive in that respect. The loss of the quality of communication, the loss of mental abilities and the effect of the diseases on the facial expression, as with some DM patients, are also important for chances on the labour market. Though the labour participation of NMD patients tends to decrease after the age of 34, the availability of work 4 adaptations makes it possible to prolong the labour career. Analysis of the actual work situation of NMD patients shows that both disorder-related limitations and work characteristics play an important role in the amount of physical work problems encountered. It is argued that physical labour has to be regarded as generally unsuitable for NMD patients. This has implications for the sort and level of education to be attained by NMD patients. Career counselling as a focus point for the choice of an educational programme may improve labour market opportunities as well as quality of employment of NMD patients. Allowing for and accepting the possible effects of the disorder in the work situation are considered to be important in respect to labour participation and work satisfaction of workers with NMD. Reducing time pressure demands and increasing the freedom to organize one's work, are measures to be given especial consideration. Perspectives professionneiles et troubles neuromusculairesLa présente étude, analyse la situation professionnelle actuelle, le désavantage d'occupation et la carrière professionnelle antérieure d'un groupe d'environ 1000 patients néerlandais souffrant tle « difficultés neuromusculaires » désignées sous le sigle «NMD ». Partant de la probabilité d 'un passé professionnel riche et d'un nombre suffisant de patients on a sélectionné quatre types de patients souffrant de troubles neuromusculaires:dystrophie myotonique, pathologies neurologiques morrices et sensorielles héréditaires, atrophie musculaire d'origine spinale, myasthénie gravis. Les résultats montrent qu'une carrière professionnelle est à portée de la plupart des patients NMD, meine de ceux qui ont des limitations sévères. On en déduit que les limitations physiques ne semblent pas représenter un facteur décisif par rapport à cette question. La perte de la qualité de communication, la perte des habiletés cognitives et les conséquences de la maladie sur l'expression faciale comme ccla se produit chez certains patients DM, ont également leur importance pour ce qui concerne les cha...
The working career of 138 adult patients with autosomal dominant facioscapulohumeral muscular dystrophy (FSHD) was studied using a mailing questionnaire. Of 126 patients with an occupational history, the average female and male working career was 15 to 30 years, respectively. Of 61 respondents actually holding a job, only nine had adjustments for disease-related handicaps. Reaching above and below shoulder level was required in 24 jobs, although shoulder weakness is a presenting symptom of FSHD. In spite of these physical problems, 52 patients (85%) labelled their job as satisfying. The duration of their working career and the satisfaction with their work despite frequent physical problems warrant a careful vocational guidance of FSHD patients in order to prevent or postpone unemployment. Similar working career studies in patients with other neuromuscular disorders are worthwhile.
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