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

Author

Nayiager, Trishana, Barr, Ronald D., and Health Research Methodology

Subjects
health-related quality of life, child, Oncology, Epidemiology, survivor, health utilities index, pain, brain tumour, Pediatrics, humanities
Abstract

Background: 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. Objective: 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. Methods: 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. Results: 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. Conclusion: 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. Master of Science (MSc)

Published
2013

18. Nutritional Status at Diagnosis in Children With Cancer I. An Assessment by Dietary Recall—Compared With Body Mass Index and Body Composition Measured by Dual Energy X-ray Absorptiometry

Author

Collins, Laura, primary, Nayiager, Trishana, additional, Doring, Nancy, additional, Kennedy, Charlene, additional, Webber, Colin, additional, Halton, Jacqueline, additional, Walker, Scott, additional, Sala, Alessandra, additional, and Barr, Ronald D., additional

Published
2010
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20. Body composition and bone health in long-term survivors of acute lymphoblastic leukaemia in childhood and adolescence: the protocol for a cross-sectional cohort study.

Author

Barr, Ronald, Nayiager, Trishana, Gordon, Christopher, Marriott, Christopher, and Athale, Uma

Abstract

Introduction: Success in the treatment of young people with cancer, as measured conventionally by survival rates, is mitigated by late effects of therapy that impose a burden of morbidity and limit life expectancy. Among these adverse sequelae are altered body composition, especially obesity, and compromised bone health in the form of osteoporosis and increased fragility. These outcomes are potentially reversible and even preventable. This study will examine measures of body composition and bone health in long-term survivors of acute lymphoblastic leukaemia (ALL) in childhood and adolescence. These measures will be complemented by measures of physical activity and health-related quality of life (HRQL). Methods and analysis: Survivors of ALL who are at least 10 years from diagnosis, following treatment on uniform protocols, will undergo measurements of body mass index; triceps skin fold thickness and mid-upper arm circumference; fat mass, lean body mass, skeletal muscle mass and bone mineral density by dual energy X-ray absorptiometry; trabecular and cortical bone indices and muscle density by peripheral quantitative CT; physical activity by the Habitual Activity Estimation Scale; and HRQL by Health Utilities Index instruments. Descriptive measures will be used for continuous variables and number (percent) for categorical variables. Associations between variables will be assessed using 2 Fisher's exact t test and the χ² test; correlations will be tested by the Pearson correlation coefficient. Ethics and dissemination: The study is approved by the institutional research ethics board and is supported by a competitive funding award. Dissemination of the results will occur by presentations to scientific meetings and publications in peer-reviewed journals, and by posting summaries of the results on websites accessed by adolescent and young adult survivors of cancer. [ABSTRACT FROM AUTHOR]

Published
2015
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