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Journal of Pain and Symptom Management

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Symptom Experience and Quality of Life in Pediatric Brain

Tumor Survivors: A Cross-Sectional Study
Gail Macartney, RN(EC), PhD, CON(C)
PhD, CON(C)

, Elizabeth VanDenKerkhof, RN, DrPH, Margaret B. Harrison, RN, PhD, Dawn Stacey, RN,

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Received 11 September 2013; received in revised form 15 December 2013; accepted 19 December 2013. published online 07 April
2014.
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Abstract
Context.
Little is known about the symptom experience and quality of life of children and youths who have completed treatment for a
pediatric brain tumor.

Objectives
This study describes the symptom experience and health-related quality of life (HRQL) of children who have survived a brain
tumor.

Methods
This observational, cross-sectional study used a convenience sample of 50 children who were being followed in ambulatory
care after they had completed brain tumor treatment. Their symptom experience was measured using the Memorial Symptom
Assessment Scale (MSAS) and HRQL was measured using the Pediatric Quality of Life Inventory (the PedsQL) .

Results
The median number of symptoms reported by the participants was six. The most prevalent symptoms were lack of energy
(52%), feeling drowsy (41%), difficulty with sleep (38%), lack of concentration (36%) and headaches (36%). Among those
reporting symptoms, the most distressing symptoms were pain (14%), headaches (12%), lack of energy (8%), difficulty with
sleep (8%) and feeling irritable (4.6%). Four symptoms -- lack of energy, concentration, pain and shortness of breath -explained most of the variance in the PedsQL subscales and total scores.

Conclusion
Pediatric brain tumor survivors experience many symptoms after treatment. Care providers should be particularly diligent
screening for symptoms including pain, headaches, fatigue and sleep problems, as these symptoms may be particularly
distressing for children.
Key Words: symptom experience, quality of life, pediatric brain tumor survivors

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PII: S0885-3924(14)00153-5
doi:10.1016/j.jpainsymman.2013.12.243
2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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Journal of Pain and Symptom Management

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