Objectives: To investigate self-reported locomotion skills in persons with cerebral palsy (CP) and to investigate variables potentially associated with deterioration of walking skills.
Design: Cross-sectional retrospective survey.
Setting and subjects: A multidimensional mailed questionnaire was sent to 766 persons with CP, 18 years or over, without intellectual disabilities, living in Norway.
Main outcome measures: The questionnaire consisted of demographic and diagnostic items, items on locomotion skills, and physical function (SF-36).
Results: In total 406 persons, 51% males and 49% females from 18 to 72 years (mean 34 years, SD 11 years) with all categories of CP responded. Median age for reported walking debut was 3 years, with a range from 1 to 14 years. In total 216 respondents (53%) walked without support, 104 persons (25%) walked with support, 39 persons (10%) had lost their walking skills, and 47 (12%) had never been able to walk. Mean level of physical function (SF-36) was 53 out of 100. There were 97 persons (27%) who reported improvement of walking skills, mainly before 25 years, 102 (28%) reported no change, and 160 (44%) reported deterioration, mainly before 35 years of age. Deterioration was significantly associated with older age, delayed walking debut and severe neurological impairment. Self-reported causes of deterioration were pain, fatigue and lack of adapted physical activity.
Conclusion: Deterioration of locomotion skills is a significant problem in persons with CP from an early age, documenting the need for life-long follow-up. The predictors above should be investigated in further clinical studies, searching for potential causal pathways.
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