AN EXPLORATION OF THE BURDEN OF PAIN AND HEALTH-RELATED QUALITY OF LIFE OF LONG-TERM SURVIVORS OF BRAIN TUMOURS IN CHILDHOOD

Abstract

<p><strong>Background</strong>: Health-related quality of life (HRQL) studies have inconsistently identified a burden of pain in survivors of brain tumours in childhood, with limited exploration of this morbidity.</p> <p><strong>Objective: </strong>To explore the HRQL, with a focus on pain, in survivors greater than 10 years from diagnosis of a primary brain tumour in childhood or adolescence.</p> <p><strong>Methods:</strong> A cross-sectional study was undertaken using Health Utilities Index (HUI) questionnaires. Location of pain was queried using a homunculus and a colour-analog scale facilitated the reporting of severity. Single-attribute HRQL scores for participants with and without pain were compared. Stability of pain over a decade was established using available HUI2/3 data from the same cohort with imputation for missing variables.</p> <p><strong>Results:</strong> Twelve males and 13 females out of 37 eligible subjects participated in this study. Participants (mean time from diagnosis of 19.7 years) had mean multi-attribute HRQL scores of 0.79 (SD of 0.23) for HUI2 and 0.69 (SD of 0.29) for HUI3. Thirteen (52%) participants reported pain, with ranges in severity and location of the discomfort. Participants with pain had considerably greater burdens of morbidity in sensation and emotion than those without pain. Pain also increased from the initial interview (10 years prior) to the final interview.</p> <p><strong>Conclusion:</strong> As a group, long-term survivors of brain tumours in childhood have diminished overall HRQL. However there is variability between subjects. Pain appeared to be a persistent and significant burden in a subset of individuals, with those experiencing pain reporting greater severity of morbidities in other attributes.</p>