Dependence and perceived difficulty in activities of daily living in adults with cerebral palsy and spina bifida

Purpose: The purpose of this study was to identify differences between two groups of subjects: one with cerebral palsy, the other with spina bifida in their dependence and their perceived difficulty in performing daily activities according to the Functional Independence Measure (FIM) and the Instrumental Activity Measure (IAM), and to compare these findings with the reported use of assistance. Method: Community-living persons, 53 with cerebral palsy and 20 with spina bifida, aged 20 to 39 years, participated in semistructured interviews in their homes, where rating was performed using items from FIM and IAM. Results: Differences were found for the reported use of assistance and the dependence rated according to FIM and IAM. Significant differences for dependence were found between the CP and SE subjects concerning Eating, Bladder and Bowel items and for perceived difficulty concerning toileting, bladder and bowel. There was close overall agreement between dependence and perceived difficulty, except for the item walk/wheelchair. Conclusions: Subjects in both groups needed help in basic and instrumental ADL. The ability of spina bifida subjects was more influenced in toileting, bladder, bowel than the cerebral palsy subjects and tended also to be so in mobility instrumental tasks. FIM and IAM do not cover all aspects of significance in community-living adults. Further items have to be developed, covering personal care and occupational as well as leisure domains.