Community perspectives and insights into cancer surveillance, prevention, and research - an engaged participatory approach to cancer epidemiology research in remote areas of Northeastern Uganda

Sep 22, 2026

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Limited evidence exists on cancer screening, prevention, and treatment in Northeastern Uganda’s remote areas. This qualitative study captured community stakeholder perspectives—patients, caretakers, opinion leaders, health managers, and policy makers—to define priorities for cancer surveillance, prevention, and research. Data came from six semistructured key informant interviews, two focus groups, and one community dialogue (July–August 2025), analyzed thematically to derive emergent themes, quotes, and actionable recommendations.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages12

Reading Time30 min

AccessFree to download

Abstract

Background

Methods

Findings

Conclusion

Opito etal. BMC Cancer (2026) 26:718 BMC Cancer [https://doi.org/10.1186/s12885-026-16088-x](https://doi.org/10.1186/s12885-026-16088-x) RESEARCH Open Access Community perspectives and insights into cancer surveillance, prevention, and research: an engaged participatory approach to cancer epidemiology research in remote areas of Northeastern Uganda Ronald Opito1*, Alfred Jatho2,3, Wilber Sabiiti4, Hellen Akurut1, Emmanuel Othieno5, Lawrence Obado Osuwat6, Anthony Mugeere7, Patrick Igulot8 and Jackson Orem2 Abstract Background There is limited research on cancer screening, prevention and treatment in the remote areas of Northeastern Uganda. Specifically, there is limited research presenting cancer control stakeholder perspectives in remote settings, whereas stakeholders’ perspectives are critical for an engaged participatory approach to cancer control. This study therefore aimed to establish the community (patients, caretakers, opinion leaders, health managersand policy makers) perspectives on cancer surveillance, prevention, treatment and identify priorities for cancer research in Northeastern Uganda. Methods This qualitative research was part ofa stakeholder’s consultation on cancer research priorities in Northeastern Uganda for Wellcome Trust research grant application, conducted by a consortium of research partners. Six semistructured Key Informant Interviews (KIIs), two focus group discussions (FGDs) and one community dialogue meeting were conducted between July and August 2025. Thematic data analysis was conducted to identify emergent themes from the interviews. Findings are presented using the key emergent themes, supporting quotes, and are presented in tablesand text. This study is reported in accordance with Consolidated Criteria for Reporting Qualitative Research (COREQ) . Key Findings There was delayed diagnosis in most cases for cancer patients. After the cancer diagnosis, patients were referred to Mulago Hospital, approximately 300Km away from their homes for further treatment, with many hesitations and incapacity to go to Mulago due to many social and economic challenges. There is no stand-alone cancer surveillance system in the country and currently it depends on health facility data which have lots of weaknesses including incompleteness and inaccuracy. Health facilities are ill-prepared to respond to the growing burden of cancers. Priorities for cancer research include epidemiology and etiology of cancer and a focus on population-based registry for unique populations in Uganda and strengthening cancer surveillance systems. *Correspondence: Ronald Opito[dopito@sun.ac.ug](dopito@sun.ac.ug) Full list of author information is available at the end of the article © The Author(s) 2026. Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit [http://creati](http://creati)[vecommons.org/licenses/by-nc-nd/4.0/](vecommons.org/licenses/by-nc-nd/4.0/.)[.](vecommons.org/licenses/by-nc-nd/4.0/.) Opito et al. BMC Cancer (2026) 26:718 Page 2 of 12 Conclusion This study highlights the importance of an engag

FAQs

What problem does the study address about cancer care in remote Northeastern Uganda?

It addresses limited research and weak cancer control implementation in remote settings, including delayed diagnosis and barriers to reaching treatment facilities.

How was the research conducted and analyzed?

The study used stakeholder consultations with six semistructured key informant interviews, two focus group discussions, and one community dialogue meeting, followed by thematic data analysis.

What key findings emerged regarding cancer surveillance and diagnosis?

Many patients experienced delayed diagnosis; referral to Mulago Hospital (about 300 km) faced social and economic hesitations. The country lacks a stand-alone surveillance system and relies on health facility data that are incomplete and inaccurate.

Sep 22, 2026

Upload by Levi