[Health and social services for children with neuromuscular diseases].
BACKGROUND
Information from parents of children with neuromuscular diseases and from the children 16 years later is used to discuss specialist medical care towards this group in view of new treatment possibilities and the Norwegian health and social service reforms over the same period.


METHODS
Parents of 100 children with neuromuscular disease were interviewed in 1981 about their children's health and their use of health and social services. The interviews were repeated in 1997 with 58 of 68 children still living.


RESULTS
A comparison of the sets of information from 1981 and 1997 shows the progression of disease and current marital status of the informers. In 1997 we found that compared with findings from 1981, they had closer contact with local health services and less contact with specialised medicine.


CONCLUSIONS
Our findings suggest that treatment programmes and better coordination of specialist medical follow-up are needed for people with neuromuscular diseases.
Lund-Petersen
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Prosjekt LIBRA-Foreningen for Muskelsyke Kjelsåsveien 174 0402 Oslo. prosjektlibra@libra.org
Tangsrud
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D000293:Adolescent; D000328:Adult; D002648:Child; D002662:Child Health Services / Q000706:statistics & numerical data; D002675:Child, Preschool; D019988:Children with Disabilities / Q000534:rehabilitation*; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D020388:Muscular Dystrophy, Duchenne / Q000628:therapy; D009468:Neuromuscular Diseases / Q000175:diagnosis / Q000534:rehabilitation / Q000628:therapy*; D009664:Norway; D012947:Social Work / Q000706:statistics & numerical data; D014897:Spinal Muscular Atrophies of Childhood / Q000628:therapy; D011795:Surveys and Questionnaires