Self-Perceived Barriers to Pediatric Cancer Care in Sub-Saharan Africa: A Cross-Sectional Multinational Study

PURPOSEThe number of patients with childhood cancer (CC) in sub-Saharan Africa is expected to rise over the coming years. According to the WHO Initiative for Childhood Cancer, access to care is crucial and must be guided by the needs of patients and their families. Our study explored barriers to CC...

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Main Authors: Ole Stoeter, Nikolaus C.S. Mezger, Tamara Koenig, Eric Chokunonga, Girum Tessema, Adugna Fekadu Damise, Alda Stevy Makouanzi, Esther Majaliwa, Mahine Ivanga, Bakarou Kamate, Franck Gnahatin, Sarah Nambooze, Ima-Obong A. Ekanem, Toralf Bernig, Biying Liu, Sumit Gupta, Eva Johanna Kantelhardt
Format: Article
Language:English
Published: American Society of Clinical Oncology 2025-02-01
Series:JCO Global Oncology
Online Access:https://ascopubs.org/doi/10.1200/GO.24.00137
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author Ole Stoeter
Nikolaus C.S. Mezger
Tamara Koenig
Eric Chokunonga
Girum Tessema
Adugna Fekadu Damise
Alda Stevy Makouanzi
Esther Majaliwa
Mahine Ivanga
Bakarou Kamate
Franck Gnahatin
Sarah Nambooze
Ima-Obong A. Ekanem
Toralf Bernig
Biying Liu
Sumit Gupta
Eva Johanna Kantelhardt
author_facet Ole Stoeter
Nikolaus C.S. Mezger
Tamara Koenig
Eric Chokunonga
Girum Tessema
Adugna Fekadu Damise
Alda Stevy Makouanzi
Esther Majaliwa
Mahine Ivanga
Bakarou Kamate
Franck Gnahatin
Sarah Nambooze
Ima-Obong A. Ekanem
Toralf Bernig
Biying Liu
Sumit Gupta
Eva Johanna Kantelhardt
author_sort Ole Stoeter
collection DOAJ
description PURPOSEThe number of patients with childhood cancer (CC) in sub-Saharan Africa is expected to rise over the coming years. According to the WHO Initiative for Childhood Cancer, access to care is crucial and must be guided by the needs of patients and their families. Our study explored barriers to CC treatment from a patient's perspective to guide the health care providers.METHODSFrom February to September 2021, we conducted a multinational cross-sectional study with a sample from nine population-based cancer registries in nine sub-Saharan countries. Inclusion criteria comprised a cancer diagnosis according to the International Classification of Childhood Cancer, age 0-19 years, and year of diagnosis 2017-2019. A questionnaire was administered asking families about self-perceived barriers accessing surgery, radiotherapy, and chemotherapy. To assess associated factors, we conducted a multivariable regression analysis presenting the results as odds ratios (ORs).RESULTSA total of 224 patients with CC was included. The fear of treatment effects and the perceived (poor) health of the child were named most frequently as barriers for all treatment modalities (78.9% and 75.5%, respectively). For chemotherapy, respondents who indicated themselves as rich had lower odds of perceiving the (poor) health of the child as a barrier (OR, 0.06 [95% CI, 0.01 to 0.36]). For radiotherapy, long waiting time and (limited) availability in the country were more commonly barriers (OR, 7.53 [95% CI, 3.38 to 16.78]; OR, 11.11 [95% CI, 2.04 to 60.46], respectively) than for chemotherapy.CONCLUSIONDespite known barriers such as the availability of therapy, our study additionally indicates the importance of the patients' and families' perceptions of the disease and its treatment. Further expanding measures of social support for affected families should be regarded as one of the main pillars to assure access to care.
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spelling doaj-art-a14c94d934d04397a1bbbd059c2428b62025-02-06T20:59:09ZengAmerican Society of Clinical OncologyJCO Global Oncology2687-89412025-02-011110.1200/GO.24.00137Self-Perceived Barriers to Pediatric Cancer Care in Sub-Saharan Africa: A Cross-Sectional Multinational StudyOle Stoeter0Nikolaus C.S. Mezger1Tamara Koenig2Eric Chokunonga3Girum Tessema4Adugna Fekadu Damise5Alda Stevy Makouanzi6Esther Majaliwa7Mahine Ivanga8Bakarou Kamate9Franck Gnahatin10Sarah Nambooze11Ima-Obong A. Ekanem12Toralf Bernig13Biying Liu14Sumit Gupta15Eva Johanna Kantelhardt16Global and Planetary Health Working Group, Institute of Medical Epidemiology, Biometrics and Informatics, Martin-Luther-University Halle-Wittenberg, Halle, GermanyGlobal and Planetary Health Working Group, Institute of Medical Epidemiology, Biometrics and Informatics, Martin-Luther-University Halle-Wittenberg, Halle, GermanyGlobal and Planetary Health Working Group, Institute of Medical Epidemiology, Biometrics and Informatics, Martin-Luther-University Halle-Wittenberg, Halle, GermanyZimbabwe National Cancer Registry, Harare, ZimbabweDepartment of Oncology, School of Medicine, Addis Ababa University, Addis Ababa, EthiopiaAddis Ababa University College of Health Sciences, Tikur Anbessa Specialized Hospital, Radiotherapy Center, Addis Ababa, EthiopiaHôpital général Adolphe sicé, Brazzaville, CongoKilimanjaro Christian Medical Center, Moshi, TanzaniaInstitut de Cancérologie d’Akanda, Libreville, GabonFaculté de Médecine et d'Odonto-Stomatologie, Bamako, MaliRegistre des cancers d'Abidjan, Programme National de lutte contre le Cancer, Abidjan, Côte d’IvoireKampala Cancer Registry, School of Biomedical Sciences, Makerere University, Makerere, UgandaCalabar Cancer Registry, Department of Pathology, University of Calabar Teaching Hospital, Calabar, NigeriaDepartment of Pediatrics, Martin-Luther-University Halle-Wittenberg, Halle, GermanyAfrican Cancer Registry Network, Oxford, United KingdomDivision of Hematology/Oncology, The Hospital for Sick Children, Toronto, CanadaGlobal and Planetary Health Working Group, Institute of Medical Epidemiology, Biometrics and Informatics, Martin-Luther-University Halle-Wittenberg, Halle, GermanyPURPOSEThe number of patients with childhood cancer (CC) in sub-Saharan Africa is expected to rise over the coming years. According to the WHO Initiative for Childhood Cancer, access to care is crucial and must be guided by the needs of patients and their families. Our study explored barriers to CC treatment from a patient's perspective to guide the health care providers.METHODSFrom February to September 2021, we conducted a multinational cross-sectional study with a sample from nine population-based cancer registries in nine sub-Saharan countries. Inclusion criteria comprised a cancer diagnosis according to the International Classification of Childhood Cancer, age 0-19 years, and year of diagnosis 2017-2019. A questionnaire was administered asking families about self-perceived barriers accessing surgery, radiotherapy, and chemotherapy. To assess associated factors, we conducted a multivariable regression analysis presenting the results as odds ratios (ORs).RESULTSA total of 224 patients with CC was included. The fear of treatment effects and the perceived (poor) health of the child were named most frequently as barriers for all treatment modalities (78.9% and 75.5%, respectively). For chemotherapy, respondents who indicated themselves as rich had lower odds of perceiving the (poor) health of the child as a barrier (OR, 0.06 [95% CI, 0.01 to 0.36]). For radiotherapy, long waiting time and (limited) availability in the country were more commonly barriers (OR, 7.53 [95% CI, 3.38 to 16.78]; OR, 11.11 [95% CI, 2.04 to 60.46], respectively) than for chemotherapy.CONCLUSIONDespite known barriers such as the availability of therapy, our study additionally indicates the importance of the patients' and families' perceptions of the disease and its treatment. Further expanding measures of social support for affected families should be regarded as one of the main pillars to assure access to care.https://ascopubs.org/doi/10.1200/GO.24.00137
spellingShingle Ole Stoeter
Nikolaus C.S. Mezger
Tamara Koenig
Eric Chokunonga
Girum Tessema
Adugna Fekadu Damise
Alda Stevy Makouanzi
Esther Majaliwa
Mahine Ivanga
Bakarou Kamate
Franck Gnahatin
Sarah Nambooze
Ima-Obong A. Ekanem
Toralf Bernig
Biying Liu
Sumit Gupta
Eva Johanna Kantelhardt
Self-Perceived Barriers to Pediatric Cancer Care in Sub-Saharan Africa: A Cross-Sectional Multinational Study
JCO Global Oncology
title Self-Perceived Barriers to Pediatric Cancer Care in Sub-Saharan Africa: A Cross-Sectional Multinational Study
title_full Self-Perceived Barriers to Pediatric Cancer Care in Sub-Saharan Africa: A Cross-Sectional Multinational Study
title_fullStr Self-Perceived Barriers to Pediatric Cancer Care in Sub-Saharan Africa: A Cross-Sectional Multinational Study
title_full_unstemmed Self-Perceived Barriers to Pediatric Cancer Care in Sub-Saharan Africa: A Cross-Sectional Multinational Study
title_short Self-Perceived Barriers to Pediatric Cancer Care in Sub-Saharan Africa: A Cross-Sectional Multinational Study
title_sort self perceived barriers to pediatric cancer care in sub saharan africa a cross sectional multinational study
url https://ascopubs.org/doi/10.1200/GO.24.00137
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