Abstract
Aim
To assess the impact of childhood cancer and its harmful effects on health-related quality of life (HRQoL) in children and adolescents based on both the mother’s perception and the child’s self-perception.
Subject and methods
The Pediatric Quality of Life Inventory (PedsQL™) 3.0 Cancer Module was administered to 52 pairs of mothers and children/adolescents aged 1–18 years. The participants were recruited from a pediatric hematology/oncology center in a Brazilian public hospital. Data analysis included descriptive statistics and logistic regression.
Results
The majority of the total sample were male (57.7%), aged 1–8 years (59.6%), and the main diagnosis was leukemia (88.5%). The family income was less than twice the monthly minimum wage in 90.4%, and 76.9% of the mothers had more than 8 years of education. In both groups, the descriptive analysis revealed lower scores in the Procedural Anxiety, Nausea, and Concern domains of the PedsQL™ 3.0 Cancer Module. There were no associations between the variables according to the mothers' perceptions. On the other hand, in the self-reports of children/adolescents, associations were found between HRQoL scores and the age group 9–18 years (OR = 5.74; 95% CI: 1.16–28.49), diagnosis of lymphoma (OR = 16.98; 95% CI: 1.33–216.29), and mothers with less than 8 years of education (OR = 6.71; 95% CI: 1.28–35.07).
Conclusion
The age of the child/adolescent, type of cancer, and the mother’s schooling were factors that exerted a negative influence on the self-perception of HRQoL among children/adolescents in treatment for cancer. The same was not found when the mothers were asked about the HRQoL of their children. With these findings, implementation in public health can be adopted based on actions and interventions in treatment, seeking a better HRQoL or even its restoration.
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The authors provide all the data used in the research for publication.
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Acknowledgements
The authors are grateful to the Brazilian fostering agencies that contributed to the funding of the study: Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq) and Coordenação de Aperfeiçoamento de Pessoal Nível Superior (CAPES).
Funding
This study was supported by the Brazilian fostering agency Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq [National Council of Scientific and Technological Development]) through grant no. 130103/2021-7 and was funded in part by Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES [Coordination for the Advancement of Higher Education Personnel])—Financing code 001.
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Saul M. Paiva conceived, designed and supervised the study and critically edited the manuscript. Anna Vitória M.V. Silva conducted the data collection with the participants, analyzed and interpreted the results and wrote the manuscript. Matheus F. Perazzo supervised the data analysis and critically edited the manuscript. Isabel. Z. Freitas conducted the data collection with the participants and assisted in writing the manuscript. Alice. M.C. Santos conducted the data collection with the participants and assisted in writing the manuscript.
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Research involving human participants/informed consent: The protocol for this study received approval from the Human Research Ethics Committee of the Federal University of Minas Gerais (certificate number: 36138920.2.0000.5149/#4.446.866). The children/adolescents and their mothers were informed that participation was completely voluntary. If they decided not to participate, this decision would not have any consequences and would not affect the treatment that they were receiving at the hospital. During the research there were no losses. Inclusion and exclusion criteria, and restrictions were described in the methodology. All participants received clarification regarding the objectives of the study and were assured confidentiality of the data collected.
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The children/adolescents and their mothers were informed that participation was completely voluntary. If they decided not to participate, this decision would not have any consequences and would not affect the treatment that they were receiving at the hospital. All participants received clarification regarding the objectives of the study and were assured confidentiality of the data collected. The mothers agreed to participate by signing a statement of informed consent. The children/adolescents also agreed to participate by signing a term of assent. Printed copies were locked in a file. Digital information was maintained on a computer protected with a password. No participants were offered incentives or compensation for participation in any way.
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Silva, A.V.M.V., Santos, A.M.C., Freitas, I.Z. et al. Impact of childhood cancer on health-related quality of life in children and adolescents: self-perception and mother’s perception. J Public Health (Berl.) (2023). https://doi.org/10.1007/s10389-023-01982-6
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DOI: https://doi.org/10.1007/s10389-023-01982-6