Symptom Experience and Quality of Life in Children Who Have Survived a Brain Tumour

Abstract

Purpose The purpose of this enquiry is to explore the symptom experience and the health-related quality of life (HRQL) of children who have survived a brain tumour.

Design An emergent, mixed-method study design was used with three phases of inquiry. 1) A systematic review was undertaken of previous research on the HRQL outcomes and symptom experience of children who have survived a brain tumour. 2) A quantitative study of the relationship between symptom experience and HRQL in 50 children who have survived a pediatric brain tumour was completed. This study was followed by a qualitative study of 12 children that used an interpretive descriptive methodology to understand the perceived relationship between symptom experience, coping and quality of life. 3) The results of phases 1 and 2 were translated into an evidence-informed clinical practice framework.

Results 1) Pediatric brain tumour survivors had poorer HRQL outcomes than other cancer survivors or healthy peers. Only two previous studies had explored the relationship between symptoms and HRQL. 2) Pediatric brain tumour survivors experience many symptoms following the completion of treatment. The most distressing symptoms were pain, headaches, fatigue and sleep problems. Survivors of pediatric brain tumours described multiple symptoms that affect their life; yet overall they described their quality of life as good. Survivors used a variety of coping strategies to help mitigate the negative effects of these symptoms. 3) The results of the above studies informed the development of a clinical practice framework (the Queen’s-Macartney Multidisciplinary Action Plan for Oncology Survivors - Q-MapS), that requires further testing. It is intended to optimize clinical practice, to encourage education and to stimulate further research.

Conclusions Child survivors of brain tumours experience various symptoms that can affect their HRQL. Nurses play a pivotal role in the systematic assessment and management of the multidimensional symptom experience of children following treatment for a brain tumour. Q-MapS can empower patients and their families by increasing their awareness of potential or actual problems related to their symptom experience and HRQL. More research is needed to better understand the relationship between symptoms and HRQL in children surviving brain tumours.