Function and Health in Adults with Dyskinetic Cerebral Palsy—A Follow-Up Study

TL;DR

This study follows adults with dyskinetic cerebral palsy to assess their health, function, and living conditions, finding significant impairments and frequent health issues despite some treatment benefits.

Contribution

The study provides longitudinal insights into the health and functional outcomes of adults with dyskinetic cerebral palsy.

Findings

All participants had dystonia, and most had spasticity, with intrathecal baclofen reducing these symptoms.

Joint range of motion limitations were common, especially in the shoulders and hips.

Most participants had frequent healthcare contact and significant fatigue, with many living with their parents.

Abstract

Background/Objectives: Dyskinetic cerebral palsy (DCP) often implies severe motor impairment and risk of health problems. Our aim was to follow up a group of young adults with DCP that we previously examined as children, to describe health, function, and living conditions. Methods: Interviews regarding health issues, treatments, and living conditions, and quality of life (RAND-36) and fatigue questionnaires were completed. Gross and fine motor function, communication, and speech ability were classified, and weight, height, spasticity, and dystonia were assessed and compared to previous data. Joint range of motion (ROM) was compared to older adults with DCP. Results: Dystonia was present in all fifteen participants, and spasticity in all but two. A decrease was found mainly in those who received intrathecal baclofen (ITB). ROM limitations were most pronounced in shoulder flexion, abduction and inward rotation (while outward rotation was hypermobile), hip abduction, hamstrings, and knee extension. The majority had frequent contact with primary and specialist healthcare. Seven participants were underweight, eight had a gastrostomy, and seven had ITB. Upper gastrointestinal and respiratory problems were frequent. Orthopedic surgery for scoliosis was reported in five, and lower extremity in nine, while fractures were reported in six participants. RAND-36 revealed physical functioning, general health, and vitality as the greatest problem areas. Fatigue was significant in 64%. Eight participants lived with their parents. Participants at more functional levels completed tertiary education and lived independently. Conclusions: Most participants had severe impairment and many health issues, despite decreased dystonia and spasticity due to ITB. Sleep problems and pain were uncommon.

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