Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2022 Sep 30;9(10):1497.
doi: 10.3390/children9101497.

A Review of Patient-Reported Outcome Measures in Childhood Cancer

Madeline R Horan  1 , Jin-Ah Sim  2 , Kevin R Krull  1   3 , Justin N Baker  4 , I-Chan Huang  1
Affiliations
Review

A Review of Patient-Reported Outcome Measures in Childhood Cancer

Madeline R Horan et al. Children (Basel). .

Abstract

Patient-reported outcomes (PROs) are used in clinical work and research to capture the subjective experiences of childhood cancer patients and survivors. PROs encompass content domains relevant and important to this population, including health-related quality-of-life (HRQOL), symptoms, and functional status. To inform future efforts in the application of PRO measures, this review describes the existing generic and cancer-specific PRO measures for pediatric cancer populations and summarizes their characteristics, available language translations, content coverage, and measurement properties into tables for clinicians and researchers to reference before choosing a PRO measure that suits their purpose. We have identified often unreported measurement properties that could provide evidence about the clinical utility of the PRO measures. Routine PRO assessment in pediatric cancer care offers opportunities to facilitate clinical decision-making and improve quality of care for these patients. However, we suggest that before implementing PRO measures into research or clinical care, the psychometric properties and content coverage of the PRO measures must be considered to ensure that PRO measures are appropriately assessing the intended construct in childhood cancer patients.

Keywords: childhood cancer survivors; chronic health conditions; health-related quality-of-life; symptoms.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Flow diagram of PRO measure selection.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Ward Z.J., Yeh J.M., Bhakta N., Frazier A.L., Girardi F., Atun R. Global childhood cancer survival estimates and priority-setting: A simulation-based analysis. Lancet Oncol. 2019;20:972–983. doi: 10.1016/S1470-2045(19)30273-6. - DOI - PubMed
    1. Children’s Oncology Group . Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 5.0. Children’s Oncology Group; Monrovia, CA, USA: 2018.
    1. McDougall J., Tsonis M. Quality of life in survivors of childhood cancer: A systematic review of the literature (2001–2008) Support Care Cancer. 2009;17:1231–1246. doi: 10.1007/s00520-009-0660-0. - DOI - PubMed
    1. Varni J.W., Limbers C.A., Burwinkle T.M. Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual. Life Outcomes. 2007;5:43. doi: 10.1186/1477-7525-5-43. - DOI - PMC - PubMed
    1. Zeltzer L.K., Lu Q., Leisenring W., Tsao J.C., Recklitis C., Armstrong G., Mertens A.C., Robison L.L., Ness K.K. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A report from the Childhood Cancer Survivor Study. Cancer Epidemiol. Biomark. Prev. 2008;17:435–446. doi: 10.1158/1055-9965.EPI-07-2541. - DOI - PubMed

LinkOut - more resources