The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology
cancer; literacy; patient-reported outcomes; pediatric
Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study’s purpose was to determine relationships between literacy, age, and race and their influence on a child’s ability to understand and complete a PRO instrument.
Withycombe J S; McFatrich M; Pinheiro L; Hinds P S; Keller F G; Baker J N; Mack J W; Sung L; Waldron M K; Reeve B B
Quality of Life Research
2019
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<a href="http://doi.org/10.1007/s11136-019-02109-9" target="_blank" rel="noreferrer noopener">10.1007/s11136-019-02109-9</a>
Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review
Cross-Sectional Studies; Young Adult; Child; Humans; Adult; Adolescent; Reproducibility of Results; Biomedical Research; Quality of Life/psychology; Psychometrics; Adverse event self-report; Pediatric oncology; Self Report; Self-report instruments; Medical Oncology/standards
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.
Pinheiro LC; McFatrich M; Lucas N; Walker JS; Withycombe JS; Hinds PS; Sung L; Tomlinson D; Freyer DR; Mack JW; Baker JN; Reeve BB
Quality of Life Research
2018
<a href="http://doi.org/%2010.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">10.1007/s11136-017-1692-4</a>