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Qual Life Res. 2018 Feb;27(2):291-319. doi: 10.1007/s11136-017-1692-4. Epub 2017 Sep 6.

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review.

Author information

1
Division of General Internal Medicine, Department of Medicine, Weill Cornell Medicine, New York, NY, 10064, USA. lcp2003@med.cornell.edu.
2
Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
3
Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
4
Health Sciences Library, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
5
Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA, USA.
6
Department of Nursing Research and Quality Outcomes, Children's National Health System, Department of Pediatrics, George Washington University, Washington, DC, USA.
7
Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada.
8
Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, Canada.
9
Children's Center for Cancer and Blood Diseases, Children's Hospital Los Angeles, Los Angeles, CA, USA.
10
Dana-Farber Cancer Institute, Boston, MA, USA.
11
Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA.

Abstract

OBJECTIVE:

Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment.

METHODS:

A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility.

RESULTS:

There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies.

CONCLUSIONS:

This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.

KEYWORDS:

Adverse event self-report; Pediatric oncology; Self-report instruments

PMID:
28879501
PMCID:
PMC5823735
DOI:
10.1007/s11136-017-1692-4
[Indexed for MEDLINE]
Free PMC Article

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