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

NCT ID: NCT07211594

Last Updated: 2025-10-08

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 97 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2018-10-18
• Study Completion Date: 2020-02-18

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.

Conditions

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

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: CROSS_SECTIONAL

Study Groups

Adolescents with cerebral palsy

The study was conducted with 97 adolescents CP attending Hacettepe University Physiotherapy and Rehabilitation Department's Pediatric Rehabilitation together with their caregivers.

No interventions assigned to this group

Caregivers of adolescent with cerebral palsy

Caregivers of adolescent with cerebral palsy who may be parents, grandparents or caregivers.

No interventions assigned to this group

the physiotherapist who conducts the adolescent rehabilitation process.

pediatric physiotherapists working in the field of pediatric rehabilitation especially with cerebral palsy

No interventions assigned to this group

Eligibility Criteria

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

• Minimum Eligible Age: 11 Years
• Maximum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Hacettepe University

OTHER

Sponsor Role: lead

Responsible Party

Mintaze Kerem Gunel

Prof. Dr.

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Mintaze Kerem Gunel, Prof. Dr.

Role: STUDY_DIRECTOR

Hacettepe University

Locations

Hacettepe University

Ankara, , Turkey (Türkiye)

Countries

Turkey (Türkiye)

References

Sentenac M, Rapp M, Ehlinger V, Colver A, Thyen U, Arnaud C. Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence. Dev Med Child Neurol. 2021 Jan;63(1):68-74. doi: 10.1111/dmcn.14638. Epub 2020 Jul 25.

Reference Type: BACKGROUND

PMID: 32710687 (View on PubMed)

Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC. A comparison of doctors', parents' and children's reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev. 2012 Mar;38(2):186-95. doi: 10.1111/j.1365-2214.2011.01240.x. Epub 2011 Jun 8.

Reference Type: BACKGROUND

PMID: 21651605 (View on PubMed)

Aza A, Riquelme I, Gomez Vela M, Badia M. Proxy- and self-report evaluation of quality of life in cerebral palsy: Using Spanish version of CPQOL for Children and adolescents. Res Dev Disabil. 2024 Nov;154:104844. doi: 10.1016/j.ridd.2024.104844. Epub 2024 Sep 24.

Reference Type: BACKGROUND

PMID: 39321691 (View on PubMed)

Other Identifiers

GO 18/876-02

Identifier Type: -

Identifier Source: org_study_id