Self-Reported Quality of Life in Adolescents with Cerebral Palsy

Abstract

Health Related Quality of Life (HRQOL) is an important outcome in the delivery of health care. Research on the HRQOL in young people with cerebral palsy (CP) has relied on proxy-reports from parents. The purpose of this study was to investigate the self-reported HRQOL of young people with CP. A survey was mailed to 229 adolescents with CP in South Australia, of which 118 responded (51.5%). Seventy-one participants 11 to 17 years of age, self-reported HRQOL on the Pediatric Quality of Life Inventory 4.0 (PedsQL). Thirty-eight youth were deemed by their parent/guardian as having insufficient cognitive ability to self-report HRQOL and nine respondents returned their surveys incomplete. The mean PedsQL Physical Function score was 57.3 (SD = 24.3), the mean Psychosocial Function score was 64.5 (SD = 15.9), and the Overall PedsQL score was 62.0 (SD = 16.7). Compared to norms for children without disabilities, 67% of participants had an Overall PedsQL score greater than 1 SD below the mean. PedsQL scores were related to gross motor function classification level (Spearman's rho = −0.54), number of health issues (rho = −0.51), and socioeconomic status (rho = 0.28), but not age, gender, quality of sleep, or whether parent assistance was needed to complete the PedsQL. The results have implications for policy and efforts to identify and address barriers to full and satisfying participation in mainstream schools and community activities.

Key Words:

• Quality of life
• health related quality of life
• cerebral palsy
• physical disability
• adolescents
• self-report

Additional information

Notes on contributors

Marie T. Williams

Michael Lepp, PT, is in private practice, Associate Instructor of the Upledger Institute, and Clinical Instructor, Case Western Reserve University School of Dentistry, Cleveland, OH.

Marie McKenzie, MS, OTR, is in private practice. She was Coordinator of Occupational Therapy at Scottish Rite Hospital at the time of this study.

Heather Miller, MS, OTR/L, is currently employed by Madison County Educational Service Center, providing therapy services to the county's pre-schools. This research was completed in partial fulfillment of the requirements of an MS degree at Ohio State University.

Linda Viscardis, BA, is Team Leader and Community Development Worker, Peterborough Family Enrichment Centre. She is Co-Founder of P.R.O.S.P.E.C.T.S., a support and advocacy group for families who have children with special needs.

Debra Stewart, BSc, OT(C), is Occupational Therapist, Erinoak, Serving Young People with Physical Disabilities, Mississauga, ON, and Clinical Lecturer, School of Rehabilitation Science, McMaster University.

Janette McDougall, MA, was Project Coordinator

Kip Husted, BEd, was a parent representative on the study team.

Aviva Yochman, MA, OTR, was a student in the School of Occupational Therapy, Faculty of Medicine, The Hebrew University of Jerusalem, Israel at the time of this study.

Imelda Burgman, MA OTR/L BCP, completed her MA in Movement Sciences at Teachers College, Columbia University, and was an Occupational Therapist at The Shield Institute, Bronx, NY. She is currently Lecturer, Habilitation, School of Community Health, Faculty of Health Studies, Charles Sturt University, Albury, N.S.W., Australia.

Barbara J. Steva, OTWL, BCP, is Occupational Therapist, University of New England Community Occupational Therapy Clinic, Saco, ME. She was Director of Occupational Therapy and Therapeutic Recreation, Franciscan Children's Hospital and Rehabilitation Center, Boston, MA, when this work was completed.

Mary-Ann L. Fulks, MSc, OT(C), is Occupational Therapist, Vancouver Community Mental Health Service and Clinical Assistant Professor, School of Rehabilitation Sciences, University of British Columbia. This study was completed in partial fulfillment of a Master of Science degree.

Laura Zawacki, MS, PT, PCS, currently practices Pediatric Physical Therapy in the Chicago metropolitan area.

Judy T. Jennings holds a Certificate in PT and an MA in Special Education and has 25 years of experience as a PT working with children from infancy to high school.

Barbara G. Sarbaugh, BS and MA in OT, has worked with children for 20 years and is on the faculty, occupational therapy program at Xavier University, Cincinnati, OH.

Nicholas S. Payne, PhD, recently retired from 40 years of experience in statistics and data analysis at Proctor & Gamble, Cincinnati, OH. He was recently Research Fellow in Data Analysis, clarifying the needs of mothers and babies.

At the time of this study, Marianne Kratochvil, MA, was a social worker at the Glenrose Rehabilitation Hospital, Edmonton, Alberta. She has since retired.