Data quality, cancer burden, and disparities in oncology care reported in Kinshasa, Democratic Republic of Congo: a retrospective longitudinal descriptive observational study of data from the National Health Information System from 2017 to 2025.

Pascal Atuba Mamenepi; Héritier Kalubi Belanga; Jacques Lofandjola Masumbuku; Félicien Ilunga Ilunga; Félicien Tshimungu Kandolo

doi:10.51168/sjhrafrica.v7i2.2616

Autori

Pascal Atuba Mamenepi Student in Biostatistics and Health Informatics, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo
Héritier Kalubi Belanga Student in Nursing Sciences, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo
Jacques Lofandjola Masumbuku Professor, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo
Félicien Ilunga Ilunga Professor, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo
Félicien Tshimungu Kandolo Professor, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo

DOI:

https://doi.org/10.51168/sjhrafrica.v7i2.2616

Cuvinte cheie:

Data accuracy, Neoplasms, Health services accessibility, Retrospective studies, Kinshasa; DRC

Rezumat

Introduction

The availability of high-quality data is an essential condition for quantifying the burden of disease, supporting healthcare decision-making, and rigorously assessing equitable access to oncology care.

Objective: This study aims to analyze data completeness, temporal trends in cancer, and disparities in oncological care reported in Kinshasa.

Methods

A retrospective longitudinal descriptive observational study was conducted. The Kinshasa National Health Information System from 2017 to 2025 served as the data source. Cancer types, chemotherapy, morphine use, and mortality were examined. Data completeness was determined using these indicators as well as by health zone classification. Temporal trends were assessed using Spearman's rank correlation coefficient (α=0.05).

Results

Data completeness was high for cancers (>70–90%), low for chemotherapy (<50%), and poor for morphine (≤40%), with marked geographical disparities. The number of reported cancer cases increased from 2017 to 2019 (4,633 vs. 7,926) with a drop in 2021 (3,861 cases), then recovered to reach its highest level in 2024 (11,514 cases). Unspecified cancers accounted for more than 75% of cases. Chemotherapy use decreased in 2020 and 2023, but reporting of morphine access increased after 2021 (from 29 to 107 patients in 2025). The case fatality rate peaked in 2021 (4.30%) and decreased between 2024 and 2025 (≈1.5–1.9%). The trends in the analysis were heterogeneous across areas.

Conclusion

The results highlight deficiencies in the quality of health data reporting and disparities in access to the continuum of cancer care in Kinshasa. This underscores the need for improved data archiving services and the classification of different cancer types.

Recommendation

Thus, it is necessary to consolidate the health information system by harmonizing and standardizing cancer coding, systematically digitizing data, optimizing health archiving devices, and implementing measures to reduce inequalities in access to oncological care.

Biografii autori

Pascal Atuba Mamenepi, Student in Biostatistics and Health Informatics, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo

is a trainer of advanced-level nurses (BAC+5). Since 2020, he has been teaching at the Faculty of Nursing at the Higher Institute of Medical Techniques in Kinshasa. He is currently pursuing research in Biostatistics and Health Informatics at the Doctoral School of Health Sciences in Kinshasa. He reviews a few articles in the Asian Journal of Research in Infectious Diseases and BP International.
Héritier Kalubi Belanga , Student in Nursing Sciences, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo

is a registered nurse (Bachelor's degree + 3 years). He is currently pursuing a Master's degree in Nursing and is a member of the NGO Pallia Familli, which provides palliative care in the homes of patients in need in the city of Kinshasa.
Jacques Lofandjola Masumbuku, Professor, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo

holds a PhD in Public Health. He teaches at the Higher Institute of Medical Techniques in Kinshasa and the University of the DRC. He is currently the research officer for the National Association for Palliative Care of the Democratic Republic of Congo. Editorial member of the African Annals of Medicine, journal of the Faculty of Medicine, University of Kinshasa.
Félicien Ilunga Ilunga, Professor, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo

(https://orcid.org/0000-0002-2517-6294) holds a PhD in Public Health, specializing in Epidemiology, Biostatistics, Clinical Research, and Applied Computer Science. He teaches at the Higher Institute of Medical Techniques in Kinshasa and other higher education institutions and universities in the DRC. From 2005 to 2014, he was responsible for public health projects and served as the academic coordinator for university programs associated with the Higher Institute of Medical Techniques in Kinshasa and the Free University of Brussels. He was an editorial member of the African Annals of Medicine, a journal of the Faculty of Medicine at the University of Kinshasa, in 2018.
Félicien Tshimungu Kandolo , Professor, Higher Institute of Medical Techniques of Kinshasa, Kinshasa, Democratic Republic of Congo

(https://orcid.org/0000-0002-724-6195) holds a Ph.D. in Public Health. He teaches at the Higher Institute of Medical Techniques in Kinshasa and other universities in the DRC. He was Dean of the Faculty of Nursing, where he significantly contributed to the reform of the education system, transitioning to the LMD (Bachelor's, Master's, Doctorate) system. He was a member of the thesis monitoring and support committee and a member of the thesis examination board at the Erasme Doctoral School, Research Chair in Nursing Sciences, University of Paris 13, Bobigny-Université, Paris, France, from 2015 to 2019.

Referințe

Arnold, M., Rutherford, M.J., Bardot, A., Ferlay, J., Andersson, TM-L., Myklebust, T. Å., Tervonen, H., Thursfield, V., Ransom, D., Shack, L., Woods, RR, Turner, D., Leonfellner, S., Ryan, S., Saint-Jacques, N., De, P., McClure, C., Ramanakumar, A.V., Stuart-Panko, H., …Bray, F. (2019). Progress in cancer survival, mortality, and incidence in seven high-income countries 1995-2014 (ICBP SURVMARK-2): A population-based study. The Lancet. Oncology, 20 (11), 1493-1505. https://doi.org/10.1016/S1470-2045(19)30456-5 PMid:31521509 PMCid:PMC6838671

Ayubi, E., Lyus, R., Brhlikova, P., & Pollock, A.M. (2024). A critical appraisal of the quality of data submitted by sub-Saharan African cancer registries to GLOBOCAN 2020. JRSM Open, 15 (1), 20542704231217888. https://doi.org/10.1177/20542704231217888 PMid:38223747 PMCid:PMC10785726

Budukh, A., Bagal, S., Gupta, D., Mhamane, S., Singh, R., Qayyumi, B., Sinha, AR, Singh, S.K., Pradhan, S., Chaturvedi, P., Badwe, R., & Gupta, S. (2025). Cancer burden, its pattern and survival in Muzaffarpur: Findings from the first population-based cancer registry of Bihar state, India. Ecancermedicalscience, 19, 1972. https://doi.org/10.3332/ecancer.2025.1972 PMid:41333360 PMCid:PMC12665899

Carroll, LN, Au, AP, Detwiler, LT, Fu, T.-C., Painter, IS, & Abernethy, NF (2014). Visualization and analytics tools for infectious disease epidemiology: A systematic review. Journal of Biomedical Informatics, 51, 287-298. https://doi.org/10.1016/j.jbi.2014.04.006 PMid:24747356 PMCid:PMC5734643

Crocker-Buque, T., & Pollock, A.M. (2015). Appraising the quality of sub-Saharan African cancer registration systems that contributed to GLOBOCAN 2008: A review of the literature and critical appraisal. Journal of the Royal Society of Medicine, 108 (2), 57-67. https://doi.org/10.1177/0141076814554671 PMid:25721114 PMCid:PMC4344444

Danckert, B., Horsbøl, TA, Andersen, O., Dalton, SO, Christensen, J., Rasted, M., Petersen, A., Nørgaard, M., Azawi, N., Lund, L., & Donskov, F. (2020). Registrations of Patients with Renal Cell Carcinoma in the Nationwide Danish Renal Cancer Database versus the Danish Cancer Registry: Data Quality, Completeness and Survival (DaRenCa Study-3). Clinical Epidemiology, 12, 807-814. https://doi.org/10.2147/CLEP.S258755 PMid:32801918 PMCid:PMC7394510

DPS-Kinshasa. (2025). Description of the Kinshasa Provincial Health Division.

Foerster, M., Anele, A., Adisa, C., Galukande, M., Parham, G., Zietsman, A., Oyamienlen, CS, Iwuoha, KC, Ezeigbo, E., Bakengesa, E., Kaggwa, A., Naamala, A., Nteziryayo, A., Nakazibwe, T., Pinder, LF, Walubita, E., Pontac, J., Anderson, B.O., McKenzie, F., … McCormack, V. (2020). Few Losses to Follow-up in a Sub-Saharan African Cancer Cohort via Active Mobile Health Follow-up. American Journal of Epidemiology, 189 (10), 1185-1196. https://doi.org/10.1093/aje/kwaa070 PMid:32383449 PMCid:PMC8179024

Ghalavand, H., Shirshahi, S., Rahimi, A., Zarrinabadi, Z., & Amani, F. (2024). Common data quality elements for health information systems: A systematic review. BMC Medical Informatics and Decision Making, 24 (1), 243. https://doi.org/10.1186/s12911-024-02644-7 PMid:39223578 PMCid:PMC11367888

Griesel, M., Seraphin, TP, Mezger, NCS, Hämmerl, L., Feuchtner, J., Joko-Fru, WY, Sengayi-Muchengeti, M., Liu, B., Vuma, S., Korir, A., Chesumbai, GC, Nambooze, S., Lorenzoni, CF, Akele-Akpo, M.-T., Ayemou, A., Traoré, CB, Wondemagegnehu, T., Wienke, A., Thomssen, C., … Kantelhardt, EJ (2021). Cervical Cancer in Sub-Saharan Africa: A Multinational Population-Based Cohort Study of Care and Guideline Adherence. The Oncologist, 26 (5), e807-e816. https://doi.org/10.1002/onco.13718 PMid:33565668 PMCid:PMC8100544

Gu, Z. (2022). Complex heatmap visualization. iMeta , 1 (3), e43. https://doi.org/10.1002/imt2.43 PMid:38868715 PMCid:PMC10989952

Higgins, CR, Wilfinger, M. J., Doohan, J., Okorigwe, E., Ashenef, A., Fentie, AM, Chikowe, I., Kumwenda, H. S., Ndom, P., Saidu, Y., Opakas, J., Pastakia, S., Were, PM, Muluneh, B., Lieberman, M., & Ozawa, S. (2026). Chemotherapy Medications in Sub-Saharan Africa: Availability, Pricing, Affordability, and Predictors of Quality. JCO Global Oncology, 12, e2500118. https://doi.org/10.1200/GO-25-00118 PMid:41637673 PMCid:PMC12914698

Huang, Z., Li, M., He, D., Wei, Y., Yu, H., Wang, Y., Yuan, F., & Song, B. (2019). Two-dimensional Texture Analysis Based on CT Images to Differentiate Pancreatic Lymphoma and Pancreatic Adenocarcinoma: A Preliminary Study. Academic Radiology, 26 (8), e189-e195. https://doi.org/10.1016/j.acra.2018.07.021 PMid:30193819

Mbeje, N.P., Ginindza, T.G., & Jafta, N. (2021). Establishing and Evaluating Cancer Surveillance System in KwaZulu-Natal, South Africa. Cancer Informatics, 20, 11769351211029967. https://doi.org/10.1177/11769351211029967 PMid:34345160 PMCid:PMC8283221

Mugauri, H.D., Chimsimbe, M., Shambira, G., Shamhu, S., Nyamasve, J., Munyanyi, M., Gongora, R., Zizhou, S., Gabida, M., & Makurumidze, R. (2025). A decade of designing and implementing electronic health records in Sub-Saharan Africa: A scoping review. Global Health Action, 18 (1), 2492913. https://doi.org/10.1080/16549716.2025.2492913 PMid:40297944 PMCid:PMC12042231

Muller, P., Walters, S., Coleman, M.P., & Woods, L. (2018). Which indicators of early cancer diagnosis from population-based data sources are associated with short-term mortality and survival? Cancer Epidemiology, 56, 161-170. https://doi.org/10.1016/j.canep.2018.07.010 PMid:30056051 PMCid:PMC6189520

Ngwa, W., Addai, BW, Adewole, I., Ainsworth, V., Alaro, J., Alatise, OI, Ali, Z., Anderson, BO, Anorlu, R., Avery, S., Barango, P., Bih, N., Booth, CM, Brawley, OW, Dangou, J.-M., Denny, L., Dent, J., Elmore, SNC, Elzawawy, A., … Kerr, D. (2022). Cancer in sub-Saharan Africa: A Lancet Oncology Commission. The Lancet. Oncology, 23 (6), e251-e312. https://doi.org/10.1016/S1470-2045(21)00720-8 PMid:35550267 PMCid:PMC9393090

Omotoso, O., Teibo, JO, Atiba, FA, Oladimeji, T., Paimo, OK, Ataya, FS, Batiha, GE-S., & Alexiou, A. (2023). Addressing cancer care inequities in sub-Saharan Africa: Current challenges and proposed solutions. International Journal for Equity in Health, 22 (1), 189. https://doi.org/10.1186/s12939-023-01962-y PMid:37697315 PMCid:PMC10496173

Rajaguru, V., Jang, J., Kwon, JA, Kim, JH, Shin, J., & Chun, M. (2022). A scoping review on population-centered indicators for cancer care continuum. Frontiers in Public Health, 10, 912946. https://doi.org/10.3389/fpubh.2022.912946nPMid:36311597 PMCid: PMC9614426

Shimakawa, Y., Bah, E., Wild, C.P., & Hall, A.J. (2013). Evaluation of data quality at the Gambia National Cancer Registry. International Journal of Cancer, 132 (3), 658-665. https://doi.org/10.1002/ijc.27646 PMid:22618962

Shivshankar, S., Sarade, M., Bhojane, S., Kolekar, S., Patil, S., & Budukh, A. (2024). Quality assessment of a rural population-based cancer registry (PBCR) at Ratnagiri, Maharashtra, India, for the years 2017-18. Ecancermedicalscience, 18, 1672. https://doi.org/10.3332/ecancer.2024.1672

Somdyala, N.I., Mbuthini, L., Müller, B., Sithole, N., Ncinitwa, A., & Bradshaw, D. (2021). Active case-finding method improves completeness and accuracy of data reported to the rural Eastern Cape Cancer Registry in South Africa. Ecancermedicalscience, 15, 1251. https://doi.org/10.3332/ecancer.2021.1251 PMid:34267807 PMCid:PMC8241446

Sousa, MP, Monjardino, T., Santos, CC, Lara, L., & Bento, MJ (2025). Completeness Evaluation of Adult-Population-Based Cancer Registries: A Systematic Review. Cancers, 17 (7), 1123. https://doi.org/10.3390/cancers17071123 PMid:40227657 PMCid:PMC11988001

Sung, H., Ferlay, J., Siegel, R., Laversanne, M., Soerjomataram, I., Jemal, A., & Bray, F. (2021). Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA: a cancer journal for clinicians, 71 (3). https://doi.org/10.3322/caac.21660 PMid:33538338

Tangka, F.K.L., Subramanian, S., Edwards, P., Korir, A.R., Wabinga, H., Chokunonga, E., Finesse, A., Borok, M.Z., Liu, B., Saraiya, M., & Parkin, D.M. (2019). Cost of Operating Population-Based Cancer Registries: Results from 4 Sub-Saharan African Countries. https://stacks.cdc.gov

Tomov, L., Chervenkov, L., Miteva, DG, Batselova, H., & Velikova, T. (2023). Applications of time series analysis in epidemiology: Literature review and our experience during the COVID-19 pandemic. World Journal of Clinical Cases, 11 (29), 6974-6983. https://doi.org/10.12998/wjcc.v11.i29.6974 PMid:37946767 PMCid:PMC10631421

Vela-Vallespín, C., Manchon-Walsh, P., Aliste, L., Borras, J.M., & Marzo-Castillejo, M. (2022). Prehospital care for ovarian cancer in Catalonia: Could we do better in primary care? Retrospective cohort study. BMJ Open, 12 (7), e060499. https://doi.org/10.1136/bmjopen-2021-060499 PMid:35868821 PMCid:PMC9316044

Ward, Z.J., Gaba, Q., & Atun, R. (2024). Cancer incidence and survival for 11 cancers in the Commonwealth: A simulation-based modeling study. The Lancet. Oncology, 25 (9), 1127-1134. https://doi.org/10.1016/S1470-2045(24)00336-X PMid:39127064

WHO. (2020). Latest global cancer data: Cancer burden rises to 19.3 million new cases and 10.0 million cancer deaths in 2020 .https://www.iarc.who.int/news-events/latest-global-cancer-data-cancer-burden-rises-to-19-3-million-new-cases-and-10-0-million-cancer-deaths-in-2020/2020

Yu, C.-S., Lin, C.-H., Lin, Y.-J., Lin, S.-Y., Wang, S.-T., Wu, JL, Tsai, M.-H., & Chang, S.-S. (2020). Clustering Heatmap for Visualizing and Exploring Complex and High-dimensional Data Related to Chronic Kidney Disease. Journal of Clinical Medicine, 9 (2), 403. https://doi.org/10.3390/jcm9020403 PMid:32024311 PMCid:PMC7073732