top of page

Search by Topic / Keyword...

Topic:

Cerebral Palsy

Issue:

​

Category:

Neuromuscular

Title:

Self-reported Health-related Quality of Life in Adolescents With Cerebral Palsy

Author:

Lennon, Nancy DPT; Kalisperis, Faithe DPT; Church, Chris MPT; Niiler, Tim PhD; Miller, Freeman MD; Biermann, Isabel BA; Davey, Jennifer MD; Sees, Julieanne P. DO; Shrader, M. Wade MD

Journal:

Journal of Pediatric Orthopaedics

Date:

January 2024

Reference:

44(1): p e46-e50, DOI: 10.1097/BPO.0000000000002519

Level Of Evidence:

III

# of Patients:

102

Study Type:

Retrospective comparative study

Location:

Not specified

Summary:

This study aimed to describe health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP) and explore differences between self-reports and parent proxy reports, as well as associations of pain, age, and gross motor function with HRQOL.

Methods:

Inclusion Criteria: Adolescents with CP classified as Gross Motor Function Classification System (GMFCS) levels I-V, ages 11 to 20 years, reading ≥ 4th-grade level, who completed the self-reported Pediatric Outcomes Data Collection Instrument (PODCI). Parent Reports: Parents completed the PODCI concurrently or within 12 months of the adolescent's report. Data Comparison: Self-reported scores were compared between age groups, GMFCS levels, typically developing youth (TDY), and youth with/without pain. Statistical Tests: Comparative analysis of self- and parent-reported scores, and comparisons with TDY.

Exclusions:

Not specified

Results:

Participants: 102 adolescents (59 males, mean age 15.0 ± 2.6 years) with CP, and 50 matched parent reports. Self-reported Scores: Adolescents reported significantly higher scores than parents in 4 domains: upper extremity and physical function (P = 0.018), sports and physical function (P = 0.005), happiness (P = 0.023), and global functioning (P = 0.018). Comparison with TDY: All PODCI domains, except Happiness, had significantly lower scores for adolescents with CP compared to typically developing youth (TDY, P < 0.01). Pain Impact: The presence of pain was associated with significantly lower scores in all domains (P < 0.05).

Conclusions:

Adolescents with CP report significantly lower HRQOL in physical function domains and higher pain compared to TDY. Self- and parent-reported PODCI scores show discrepancies, with adolescents reporting better HRQOL than parents. Recognizing differences in perspectives between adolescents and parents can help healthcare providers better engage families and promote self-efficacy in adolescents transitioning to adulthood.

Relevance:

Limitations:

Perspective:

bottom of page