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

• Type of Material: Article
• Authors: Laura C. Pinheiro, Weill Cornell Medical College; Molly McFatrich, Duke University; Nicole Lucas, University of North Carolina Chapel Hill; Jennifer S. Walker, University of North Carolina Chapel Hill; Janice Squires Withycombe, Emory University; Pamela S. Hinds, George Washington University; Lillian Sung, Hospital for Sick Children; Deborah Tomlinson, Hospital for Sick Children; David R. Freyer, Children's Hospital of Los Angeles; Jennifer W. Mack, Dana Farber Cancer Institute; Justin N. Baker, St Jude Children's Research Hospital; Bryce B. Reeve, Duke University
• Language: English
• Date: 2018-02-01
• Publisher: Springer Verlag (Germany)
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2017, Springer International Publishing AG.
• Final Published Version (URL): http://dx.doi.org/10.1007/s11136-017-1692-4
• Title of Journal or Parent Work: Quality of Life Research
• ISSN: 0962-9343
• Volume: 27
• Issue: 2
• Start Page: 291
• End Page: 319
• Grant/Funding Information: This research was supported by the National Cancer Institute of the National Institutes of Health under award number R01CA175759.
• Keywords: MUCOSITIS DAILY QUESTIONNAIRE; QUALITY-OF-LIFE; ACUTE LYMPHOBLASTIC-LEUKEMIA; EVALUATION SCALE CHIMES; Pediatric oncology; FATIGUE SCALE; Life Sciences & Biomedicine; CANCER-PATIENTS; Self-report instruments; Adverse event self-report; Health Policy & Services; MINNEAPOLIS-MANCHESTER QUALITY; Health Care Sciences & Services; Public, Environmental & Occupational Health; Science & Technology; RECEIVING CHEMOTHERAPY; BRAIN-TUMORS; PSYCHOMETRIC PROPERTIES
• Research Categories: Health Sciences, Nursing

Abstract

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.