PTOTSLPCohortChild: care, health and development2023

Health-related quality of life in adolescents with cerebral palsy; a cross-sectional and longitudinal population-based study.

Selma Mujezinović Larsen, Terje Terjesen, Reidun B Jahnsen and 2 others

PMID 36041889

WHAT IT FOUND

For adolescents with severe cerebral palsy, caregiver-reported quality of life remained largely stable over five years, except for general health which declined due to increased medication use.

Severe motor impairment and pain consistently predicted lower quality of life across most domains.

Key findings

01Health-related quality of life scores were mainly unchanged from childhood to adolescence, with the exception of the General Health domain which decreased significantly.

02Severe motor impairment and more severe pain were the most important factors associated with low health-related quality of life scores in adolescence.

03A low health-related quality of life score in childhood was associated with a low score in the corresponding domain in adolescence.

STILL TO COME

How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs

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What it does not show

The study relies entirely on proxy reports from caregivers, which may not accurately reflect the adolescent's own perception, particularly regarding emotions and pain. The sample size was small (n=64), which limits the generalizability of the findings. The Communication domain was omitted from the analysis, leaving a gap in understanding the impact of communication function on quality of life. The General Health domain score is heavily influenced by medication count, which may not directly equate to a decline in health status if the medications are effectively managing symptoms.

Declared interests

The authors declared no conflicts of interest. The study was supported by the South-Eastern Norway Regional Health Authority.

The easy way to misread this

Do not interpret the decline in the General Health domain as a sign of deteriorating physical health or failed interventions. The drop was driven by an increase in the number of medications, which may indicate better management of multiple conditions rather than a worsening of the patient's underlying state.

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