Introduction

Health-related quality of life (HRQOL) is an important outcome of health interventions for children and youths with cerebral palsy (CP).

Aim of the research

To describe HRQOL of children and young people with tetraplegic cerebral palsy from the parents’ perspectives, and explore the impact of four factors (severity of CP, intellectual disability, age, and gender) on HRQOL.

Material and methods

This is a descriptive study, conducted in educational centres in central and southern Poland. The study encompassed a group of 149 children and youths with tetraplegic cerebral palsy (TCP). The HRQOL study described in this paper was carried out using the PedsQL 4.0 Generic Core and PedsQL 3.0 Cerebral Palsy Module.

Results

The lowest subscale score in generic core scales was physical functioning (mean ± SD: 11.1 ±8.5), the highest being emotional functioning (47.1 ±22.2). The lowest subscale score in CP module was daily activities (3.2 ±8.5), the highest being pain and hurt (57.1 ±29.3). PedsQL scores were related to MASC level, GMFCS level, and degree of intellectual disability, but not gender. Age correlated only with the assessment of pain and hurt (Pearson r = –0.190; p = 0.020). This study showed significant deficits in HRQOL for children with TCP, especially as regards their physical HRQOL.

Conclusions

More studies aimed at searching factors related to psychosocial HRQOL are needed. In relation with the increasing life expectancy of persons with TCP, parents and health professionals should pay more attention to appropriate assessment of pain.