HEALTH-RELATED QUALITY OF LIFE IN CEREBRAL PALSY: AGREEMENT BETWEEN ADOLESCENTS, CAREGIVERS AND PHYSIOTHERAPISTS

Completed

• Conditions: Health-Related Quality-of-Life; Adolescent; Cerebral Palsy (CP)

• Registration Number: NCT07211594
• Lead Sponsor: Hacettepe University

Brief Summary

Health-related quality of life (HRQoL) has recently become a widely used outcome measure. Although self-reporting is considered the gold standard, proxy reports are commonly used for adolescents with cerebral palsy (CP).

Study Question: Is there agreement between adolescents, caregivers and physiotherapists in health-related quality of life reports in adolescents with cerebral palsy?

Detailed Description

Cerebral palsy are often accompanied by sensory, perceptual, developmental, and behavioral problems, as well as epilepsy and secondary musculoskeletal disorders. As a result of these impairments, children and adolescents with CP have functional limitation that affect their daily lives. These limitations adversely affect their quality of life depending on the severity of functional impairments. Health-related quality of life is conceptualized as an individual's subjective evaluation of life domains that are perceived to be influenced by a medical condition or its treatment. Informed by the International Classification of Functioning, Disability and Health (ICF) and the socio-ecological model, the primary aim of interventions for individuals with cerebral palsy and their families should be to enhance quality of life. Previous research has shown that the level of agreement on HRQoL between physicians and adolescents is generally lower than that between parents and adolescents. When the caregiver is more familiar with the adolescent with CP-such as a parent rather than a medical professional-the likelihood of agreement between the adolescent and the caregiver tends to be higher. Agreement on target problems is essential for effective treatment planning. Differences between adolescents and their caregivers can influence treatment decisions; thus, combining self- and proxy-reports offers a more comprehensive assessment of HRQoL. Therefore, a multi-informant approach, considered the gold standard in CP research and practice, integrates reports from children, parents, and when appropriate professionals such as teachers or clinicians, providing a comprehensive assessment of the child's quality of life across different contexts.

Another important issue in measuring quality of life in individuals with CP is that the scales used should address CP-specific concerns. Therefore, using CP-specific measurement tools is recommended to provide clearer outcomes for intervention processes. Although research has compared the quality of life perspectives of children and adolescents with CP and their parents, there remains a lack of studies investigating the agreement between reports from adolescents with CP, their parents, and the professionals involved in their care. The main objective of this study is to assess the agreement and differences between the views of adolescents with CP, their families.

Study Timeline

• Study Start: 2018-10-18
• Primary Completion: 2019-05-18
• Study Completion: 2020-02-18
• Status Verified: 2025-09
• Study First Submitted: 2025-09-30
• Study First Submitted QC: 2025-09-30
• Last Update Submitted: 2025-09-30
• Study First Posted: 2025-10-08
• Last Update Posted: 2025-10-08

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 97

Inclusion Criteria

• being diagnosed with CP of all clinical types,
• aged 11-18 years,
• who can understand and answer the questions.

Exclusion Criteria

• Adolescents who did not attend regular therapy sessions
• Physiotherapists who performed therapy sessions with the adolescent for less than four weeks

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Health-Related Quality of Life: The Pediatric Quality of Life Inventory (PedsQL) Measurement Tool	5-10 minutes	PedsQL was designed to evaluate HR-QOL in generic and disease-specific situations with disease-specific modules in children and adolescents between 2-18 years old. The PedsQL 3.0 CP Module was designed to measure HR-QOL dimensions specific to CP. PedsQL 3.0 CP encompasses 35-item in Module seven scales: (1) Daily Activities (9 items); (2) School Activities (4 items); (3) Movement and Balance (5 items); (4) Pain and Hurt (4 items); (5) Fatigue (4 items); (6) Eating Activities (5 items); and (7) Speech and Communication (4 items). The Scales are included in parallel adolescent self-report and parent proxy-report formats. A 5-point Likert scale is used across adolescent self-reports for ages 8 to 18 years and parent proxy reports (0=never a problem; 1=almost never a problem; 2=sometimes a problem; 3=often a problem; 4=almost always a problem). Items are reverse scored and transformed to a 0-100 scale (0=100, 1=75, 2=50, 3=25, 4=0) so that higher scores indicate better HRQOL.

Trial Locations

Locations (1)

Hacettepe University; Ankara, Turkey (Türkiye)