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Updated: Jun 17, 2026

Behavioral and Locomotor Measurements Using an Open Field Activity Monitoring System for Skeletal Muscle Diseases
Published on: September 29, 2014
Living and ageing with spinal muscular atrophy type 2: observations among an unexplored patient population
Joergen Jeppesen1, Anny Madsen, John Marquardt
1RehabiliteringsCenter for Muskelsvind, Aarhus, Denmark. mail-jeppesen@mail.dk
Objective:
To study conditions of living, participation and diagnostic perceptions in a national population of adult persons with spinal muscular atrophy type 2 (SMA 2).
Methods:
A mixed method design combining cross-sectional survey data with personal narratives was chosen. Twenty-nine of 37 patients with SMA 2 aged >or=18 years participated in a semi-structured questionnaire survey and three were selected for in-depth journalistic interviews. Socioeconomic data, activities and personal significance of problems were calculated. Journalistic stories were analysed for constructs of personal diagnostic qualities.
Results:
Everyone was actively directing their life despite being heavily dependent. Deterioration of physical abilities was a major concern for women. Seventy-six per cent were single, but stated their quality of life as fine. Narratives of living with SMA 2 were associated with positive characteristics, as opposed to the medical diagnostic wording.
Conclusion:
Female coping needs more research. Narrative method complements medical knowledge.
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