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
. 2023 Apr;32(4):965-976.
doi: 10.1007/s11136-022-03259-z. Epub 2022 Sep 24.

Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies

Maria Rothmund  1   2 , Samantha Sodergren  3 , Gudrun Rohde  4   5 , Teresa de Rojas  6 , Gloria Paratico  7 , Giorgia Albini  7 , Johanna Mur  1 , Anne-Sophie Darlington  3 , Alessandra Majorana  7 , David Riedl  8   9 ; EORTC Quality of Life Group
Affiliations

Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies

Maria Rothmund et al. Qual Life Res. 2023 Apr.

Abstract

Background: Health-related quality of life (HRQOL) is a key concept in pediatric oncology. This systematic review aims to update the conceptual HRQOL model by Anthony et al. (Qual Life Res 23(3):771-789, 2014), covering physical, emotional, social and general HRQOL aspects, and to present a comprehensive overview of age- and disease-specific HRQOL issues in children with cancer.

Methods: Medline, PsychINFO, the Cochrane Database for Systematic Reviews (CDSR), and the COSMIN database were searched (up to 31.12.2020) for publications using patient-reported outcome measures (PROMs) and qualitative studies in children with cancer (8-14-year) or their parents. Items and quotations were extracted and mapped onto the conceptual model for HRQOL in children with cancer mentioned above.

Results: Of 2038 identified studies, 221 were included for data extraction. We identified 96 PROMS with 2641 items and extracted 798 quotations from 45 qualitative studies. Most items and quotations (94.8%) could be mapped onto the conceptual model. However, some adaptations were made and the model was complemented by (sub)domains for 'treatment burden', 'treatment involvement', and 'financial issues'. Physical and psychological aspects were more frequently covered than social issues.

Discussion: This review provides a comprehensive overview of HRQOL issues for children with cancer. Our findings mostly support the HRQOL model by Anthony et al. (Qual Life Res 23(3):771-789, 2014), but some adaptations are suggested. This review may be considered a starting point for a refinement of our understanding of HRQOL in children with cancer. Further qualitative research will help to evaluate the comprehensiveness of the HRQOL model and the relevance of the issues it encompasses.

Keywords: Children with cancer; Concept elicitation; Health-related quality of life; Pediatric oncology; Quality of life.

PubMed Disclaimer

Conflict of interest statement

The authors have no relevant conflicts of interest to disclose.

Figures

Fig. 1
Fig. 1
Flowchart of the study selection and data extraction procedure
Fig. 2
Fig. 2
Updated Model of Health-Related Quality of Life Issues in Children with Cancer
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Siegel DA, King J, Tai E, Buchanan N, Ajani UA, Li J. Cancer incidence rates and trends among children and adolescents in the United States, 2001–2009. Pediatrics. 2014;134(4):e945–e955. doi: 10.1542/peds.2013-3926. - DOI - PMC - PubMed
    1. Smith MA, Altekruse SF, Adamson PC, Reaman GH, Seibel NL. Declining childhood and adolescent cancer mortality. Cancer. 2014;120(16):2497–2506. doi: 10.1002/cncr.28748. - DOI - PMC - PubMed
    1. Howlader N, Noone A, Krapcho M, Miller D, Brest A, Yu M, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA. SEER cancer statistics review, 1975–2018. National Cancer Institute; 2021.
    1. Institute NC. Children with cancer—A guide for parents. National Institutes of Health; 2015.
    1. Agency EM. Appendix 2 to the guideline on the evaluation of anticancer medicinal products in man: The use of patient-reported outcome (PRO) measures in oncology studies. European Medicines Agency; 2016.

Publication types