The course of health-related quality of life of preschool children with cerebral palsy

Abstract

Purpose: The purpose of this paper is to describe the course of the health-related quality of life (HR-QoL) of children with cerebral palsy (CP) between the ages of 2.5 and 4.5 years, at both group and individual level. We also examined whether CP characteristics are helpful in understanding which children show a decrease in HR-QoL. Methods: HR-QoL of 72 children with CP was measured using the TNO-AZL Preschool children Quality of Life (TAPQOL) questionnaire at the ages of 2.5, 3.5 and 4.5 years. The course of HR-QoL was compared between groups with different CP characteristics. Results: Median scores for 10 of the 12 domains of the TAPQOL were found to be stable between ages 2.5 and 4.5 years. However, individual children showed great changes in HR-QoL at these ages, for all domains. A larger proportion of children with less severe CP showed a decrease in HR-QoL for the behaviour problems domain (p = 0.02), and a larger proportion of unilaterally affected children showed a decrease in HR-QoL regarding the anxiety (p < 0.001) and social functioning (p = 0.01) domains. Conclusions: Although the median HR-QoL of children with CP is generally stable at these ages, much variation in the course of HR-QoL exists between individual children. There is no clear association between motor functioning or limb distribution and a decrease in HR-QoL.

Implications for Rehabilitation

• Although preschool children with cerebral palsy (CP) generally have a fairly good health-related quality of life, large individual differences in the course of health-related quality of life exist.

• The type of CP or the level of motor disabilities is not related to the course of health-related quality of life.

• Because of its subjective nature, for young children with CP health-related quality of life is to be determined by asking their parents, not by doctor’s estimation depending on disease-specific factors.

Keywords::

• Cerebral Palsy
• children
• Health-related Quality of Life

Acknowledgments

A debt of gratitude is owed to the children and families for their participation in the study. The following rehabilitation centres and university hospitals in The Netherlands participated in the study: Rehabilitation Centre De Hoogstraat, Utrecht; VU University Medical Centre, Amsterdam; Academic Medical Centre, Amsterdam; Erasmus Medical Centre, Rotterdam; Rijndam Rehabilitation Centre, Rotterdam; Leiden University Medical Centre, Leiden; Rijnlands Rehabilitation Centre, Leiden; Sophia Rehabilitation Centre, Delft; Rehabilitation Centre De Trappenberg, Huizen; and Rehabilitation Centre Het Roessingh, Enschede. We would also like to thank J. W. Gorter MD PhD, project leader of PERRIN CP 0-5, for his valuable suggestions on an earlier version of this manuscript, and P. Westers, PhD. for his statistical advice.

Declaration of Interest: The authors report no declaration of interest. The PERRIN CP 0-5 study was supported by ZonMw, the Netherlands Organization for Health Research and Development (grant No.1435.0011). No additional funding was received.