Health-related quality of life, pain, and fatigue in young adults with cerebral palsy.

AIM: To describe health-related quality of life (HRQoL), pain, fatigue, and other health variables in young adults with cerebral palsy (CP), and to explore associations with the Gross Motor Function Classification System - Expanded and Revised (GMFCS-ER) and physical activity. METHOD: This was a cross-sectional study of 61 young adults at a mean age of 21 years 2 months (standard deviation 8mo, range 20-22y) with CP, from a geographically defined area. Data collection included: Short Form 36 version 2 for HRQoL, Brief Pain Inventory - Short Form, Fatigue Severity Scale, level of physical activity, medical history, and physical examination. RESULTS: Overall HRQoL equalled that of population norms; however self-reported physical health was lower in GMFCS-ER levels III to V compared to GMFCS-ER levels I to II. Self-reported mental health was, inversely, lower in GMFCS-ER levels I to II compared to GMFCS-ER levels III to V. Pain prevalence was 49%, and pain was present across all GMFCS-ER levels. Fatigue, as well as sleep problems, had 41% prevalence, with fatigue severity decreasing with increasing level of physical activity. INTERPRETATION: General HRQoL in young adults with CP was comparable to population norms. Pain and fatigue are important to address in high motor-functioning individuals also. Physical activity could be a possible protective factor against fatigue. WHAT THIS PAPER ADDS: Health-related quality of life in young adults with cerebral palsy (CP) was comparable to population norms. Pain, fatigue, and sleep problems occurred at all Gross Motor Function Classification System levels. There is a possible protective effect of physical activity on fatigue.

Does loss of spasticity matter? A 10-year follow-up after selective dorsal rhizotomy in cerebral palsy.

AIM: The aim of this study was to evaluate the long-term effects of selective dorsal rhizotomy (SDR) in children with cerebral palsy (CP). METHOD: Nineteen children (four females, 15 males; mean age 4y 7mo, SD 1y 7mo) with bilateral spastic CP, were prospectively assessed at baseline and 18 months, 3 years, and 10 years after SDR. Assessments included the Modified Ashworth Scale for spasticity, the Gross Motor Function Measure 88 (GMFM-88) and the Wilson gait scale for ambulation, neurological investigations, and passive joint range of motion assessment. A 10-year retrospective chart review was added for orthopaedic surgery after SDR. RESULTS: Baseline muscle tone at the hip, knee, and ankle level displayed a high degree of spasticity that normalized after SDR. After 10 years there was a slight recurrence of spasticity at the knee and ankle. Joint range of motion declined from a maximum at 3 years after SDR to the 10-year follow-up. Median ambulatory status was best 3 years after SDR and then declined. The GMFM-88 score increased from the median baseline value of 51 to 66 (p=0.002) and 76 (p<0.001) at the initial follow-ups. After 10 years there was a decline in gross motor function with a reduction in the GMFM-88 score to 62 (p=0.022). Within 10 years, 16 out of 19 patients had a mean of three orthopaedic surgeries (SD 2.8), soft tissue surgery being the most common. INTERPRETATION: The spasticity-reducing effect of SDR, although pronounced, did not seem to improve long-term functioning or prevent contractures. This suggests that contracture development in CP is not mediated by spasticity alone.

Exploring social participation in young adults with cerebral palsy.

OBJECTIVES: To describe social outcomes for young adults with cerebral palsy, and to explore associations of social outcomes with their classification levels within the Gross Motor Function, Manual Ability and Communication Function Classification Systems, and with the presence of intellectual disability. DESIGN: A cross-sectional study with a population-based inclusion approach at a neuropaediatric referral centre in Sweden. SUBJECTS: Sixty-one young adults with cerebral palsy, age 20-22 years. METHODS: Physical examination and questionnaires on social outcomes including living arrangements, relationships, occupation, personal finances, extent of family support with personal care, and physical examination. RESULTS: Twenty percent of the young adults with cerebral palsy had moved out of the parental home. Forty-three percent were dependent on family support for basic activities of daily living. Seventy-nine percent of those without intellectual disability were employed or studying. The Communication Function Classification Systems, and presence of intellectual disability, demonstrated associations with most social outcomes, followed in significance by Manual Ability Classification System. CONCLUSION: In this study young adults with cerebral palsy to a high extent lived in the parental home, and more often without employment, compared with their peers. Many were dependent on parental support, financially, and with activities of daily living. Intellectual disability and communication function were important determinants of social participation. Interventions aimed at alleviating the impact of these particular disabilities should be prioritized.