Affiliations: Division of Pediatric Rehabilitation, Department of
Pediatrics, Cincinnati Children's Hospital Medical Center and Department of
Physical Medicine and Rehabilitation, University of Cincinnati School of
Medicine, Cincinnati, OH, USA | Division of Biostatistics and Epidemiology, Department
of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH,
USA | Department of Occupational Therapy and Physical
Therapy, Cincinnati Children's Hospital Medical Center, Cincinnati, OH,
USA
Note: [] Corresponding author: Jilda N. Vargus-Adams MD MSc, Division of
Pediatric Rehabilitation, Cincinnati Children's Hospital Medical Center, 3333
Burnet Avenue, MLC 4009, Cincinnati, OH 45229, USA. Tel.: +1 513/636 7480; Fax:
+1 513/636 7360; E-mail: jilda.vargus-adams@cchmc.org
Abstract: Objective: Many outcome measures assess function of children with
cerebral palsy (CP), but establishing meaningful clinical change remains
challenging. This study explored correlations between subjective status ratings
in several functional domains, made by children, parents, and medical
professionals. The ratings were compared with three outcome measures in
preparation for longitudinal work to establish minimal clinically important
change. Method: Children were assessed with the Gross Motor Function Measure
(GMFM), Pediatric Evaluation of Disability Inventory (PEDI), and Cerebral Palsy
Quality of Life Questionnaire for Children (CP-QOL). Respondents provided
Likert scale and Linear Analogue Scale ratings of gross motor function, self
care, social function, quality of life, and overall function. Correlations were
calculated for outcome measure scores and ratings. Results: 122 children with CP across all GMFCS and MACS levels, 79
male, aged 8.1 ± 2.9 years generated status ratings by 27 child reports,
122 parent reports, and 110 medical professional reports. Most ratings were
moderately to highly correlated between parents and medical professionals.
Outcome measure scores were frequently significantly correlated with pertinent
ratings from medical professionals and parents but usually not with child
ratings. Conclusions: Parents and medical professionals have similar
perceptions of gross motor, self-care, quality of life, and overall status for
children with CP and these perceptions correlate with standard outcome
measures, but often do not agree with children's ratings. Longitudinal use of
subjective status ratings from parents and professionals should contribute to
establishing minimal clinically important differences for CP outcome
measures.
Keywords: Cerebral palsy, parent, outcome measures, function
