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
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
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.
Children with cancer, Concept elicitation, Health-related quality of life, Pediatric oncology, Quality of life
Rothmund, Maria
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Sodergren, Samantha
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Rohde, Gudrun
55977476-2040-476a-a539-dbc7c8644da4
De Rojas, Teresa
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Paratico, Gloria
f652bb2f-ede3-419a-9deb-3feb800b19db
Albini, Giorgia
5d742fa1-34bb-460b-8fa4-7d6f977bc468
Mur, Johanna
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Darlington, Anne-sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Majorana, Alessandra
be8cfe7d-4da0-444f-b1c7-f63ac2eb8b57
Riedl, David
dd01d4ed-3140-4f77-9923-883a04a4c136
Rothmund, Maria
874c229d-a404-4eff-9281-d9ad7eb2c902
Sodergren, Samantha
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Rohde, Gudrun
55977476-2040-476a-a539-dbc7c8644da4
De Rojas, Teresa
799aa1fb-52f8-4ecf-973a-632cfce7ad2f
Paratico, Gloria
f652bb2f-ede3-419a-9deb-3feb800b19db
Albini, Giorgia
5d742fa1-34bb-460b-8fa4-7d6f977bc468
Mur, Johanna
f16f18f8-e3e7-48c9-9f55-0e75d073844c
Darlington, Anne-sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Majorana, Alessandra
be8cfe7d-4da0-444f-b1c7-f63ac2eb8b57
Riedl, David
dd01d4ed-3140-4f77-9923-883a04a4c136
Rothmund, Maria, Sodergren, Samantha, Rohde, Gudrun, De Rojas, Teresa, Paratico, Gloria, Albini, Giorgia, Mur, Johanna, Darlington, Anne-sophie, Majorana, Alessandra and Riedl, David
(2022)
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.
Quality of Life Research.
(doi:10.1007/s11136-022-03259-z).
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.
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Updating our Understanding ... children with cancer manuscript
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s11136-022-03259-z
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Updating our Understanding ... children with cancer supplement 3
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Accepted/In Press date: 10 September 2022
e-pub ahead of print date: 24 September 2022
Additional Information:
Funding Information:
Open access funding provided by University of Innsbruck and Medical University of Innsbruck. This study was supported by the European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG). The Grant (Nos. 002–2020) was awarded to David Riedl and Samantha Sodergren.
Publisher Copyright:
© 2022, The Author(s).
Keywords:
Children with cancer, Concept elicitation, Health-related quality of life, Pediatric oncology, Quality of life
Identifiers
Local EPrints ID: 471048
URI: http://eprints.soton.ac.uk/id/eprint/471048
ISSN: 0962-9343
PURE UUID: 83750158-c4a5-45fa-ba6a-c572cb2a3a08
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Date deposited: 25 Oct 2022 16:33
Last modified: 17 Mar 2024 03:31
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Contributors
Author:
Maria Rothmund
Author:
Gudrun Rohde
Author:
Teresa De Rojas
Author:
Gloria Paratico
Author:
Giorgia Albini
Author:
Johanna Mur
Author:
Alessandra Majorana
Author:
David Riedl
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