Dependence in daily activities and life satisfaction in adult subjects with cerebral palsy or spina bifida: a follow-up study

Abstract

Purpose: To study dependence in daily activities in adults with congenital disorders living in the community by interviewing them with an interval of 5 years.

Subjects and methods: Thirty-one subjects (20 men, 11 women) aged 24-43 years at the second assessment. Twenty-two subjects had cerebral palsy, and nine had spina bifida. Interviews in the subjects' homes were conducted using Functional Independence Measure (FIM), Instrumental Activity Measure (IAM), and a questionnaire concerning life satisfaction. Rasch analysis was used for joint calibration of physical FIM- and IAM-items to obtain measure values (logits) for items and persons.

Results: Most subjects were independent in FIM items, but usually dependent in IAM items, except Mobility outdoors and Simple meal. The level of dependence increased significantly between the two assessments for four self-care items in FIM, Stairs and all IAM items except Mobility outdoors and Cleaning. For 13 subjects the overall level of dependence increased significantly for self-care between the two assessments. Most subjects were satisfied in life in general, but satisfaction in self-care ADL decreased between the two assessments.

Conclusions: The increased dependence in daily activities demonstrated may reflect reduced capacity but also changes in preferences and interests as well as the social situation.