Comparison of ventilator-dependent child reports of health-related quality of life with parent reports and normative populations

Aims. This paper is a report of the first study of ventilator-dependent child and parent ratings of health-related quality of life using a validated instrument, which was undertaken as part of a case study of costs and consequences. Background. Advances in medical care and technologies such as the ventilator have extended childhood illness trajectories beyond our current range of knowledge and experience. These advances and their effects reinforce the need for further research to determine health-related quality of life as an outcome of ventilator-dependency in childhood. Methods. The KINDL was administered to ventilator-dependent children aged 4-18 years and parents as part of an in-depth case study. Twenty-seven parents and 17 children ( including 17 child-parent pairs) completed questionnaires. Data were collected between 2001 and 2004. Findings were compared with normative values derived from a representative sample of children of a similar age in the general population. Results. Ventilator-dependent children reported significantly lower overall health-related quality of life, and significantly lower scores on all domains except about their friends, compared with school children, and chronically ill children in respect of their disease. Parents and children rated children's overall health-related quality of life the same but parents reported significantly lower scores for their child's disease and relationships with friends. There was a positive correlation between children and parents in all areas apart from self-esteem and school. Conclusions. Both child and parent perspectives are needed to understand the impact of ventilator-dependency and associated co-morbidity on the child. As new interventions and models of service delivery emerge it will be important for nurses to understand the impact on the child by evaluating physical, emotional and social consequences.