Evaluation of the implementation of the national cancer registry of Senegal: lighting the way forward

1 Introduction

Cancer, one of the major non-communicable diseases (NCDs), is undergoing a rapid epidemiological transition, particularly in sub-Saharan Africa, where cancer incidence is steadily increasing (1, 2). A comprehensive understanding of the cancer burden remains poorly understood due to a lack of reliable, timely data. According to GLOBOCAN 2022, 20 million new cases of cancer have been diagnosed worldwide, with almost 9.7 million deaths (3). The most frequently diagnosed cancers in terms of incidence were lung and breast cancer, representing 12.4% and 11.6% respectively, followed by colorectal cancer (9.6%), prostate cancer (7.3%) and stomach cancer (4.9%) (3).

In addition, over 35 million new cases of cancer are expected in 2050, an increase of 77% over the 20 million estimated in 2022, with the greatest increase in incidence expected in low-income countries (142% increase) (3).

In Africa, 1,185,216 cases of cancer were diagnosed in 2022 (4). Moreover, the cumulative risk of developing cancer before the age of 75 is 10.7% and 13.3% for men and women respectively (5).

Senegal is facing a market increase in cancers, with 11,814 new cases diagnosed in 2022 (6). In Senegal, cancer incidence and mortality are rising sharply, and cancer has become a significant public health problem. In 2022, 11,814 cases of cancer were diagnosed, with an estimated mortality rate of 81.6%. The five most frequent cancers during this period were cervical (2,065, 17.4%), breast (1,838, 15.5%), liver (1,144, 9.7%), prostate (913, 7.7%) and stomach (680, 5.7%). Prostate cancer is the most common type in men, while in women cervical cancer is most common (7).

Currently, Senegal lacks comprehensive data on the types of cancer, due to the absence of a functional registry, which was discontinued in 2015. Some data are available from independent cancer treatment centers, such as the Joliot Curie Institute (JCI), Dalal–Jam Hospital, and Cheikh Ahmadou Bamba Khadim Hospital which is the reference center for cancer care in Senegal. In 2020 at the IJC, a comprehensive cancer care facility and referral center for complex cases, 1,903 cases of cancer were diagnosed, with breast and cervical cancers predominating, making women the most affected group.

Senegal established a cancer registry in 2014 in eleven (11) public health facilities in the Dakar region, with plans to extend it to private clinics and regional hospitals. The specific objectives included adopting an online registration system, defining a work plan for tumor registration, and appointing official registrars for the 11 main institutions. Following this, registrations began and 2010 was set as the base year. However, problems were identified in most facilities, with the exception of four, including the Institute Curie, the main problems were data collection, difficult access to medical records archives, and the lack of an internet connection, which is essential for accessing the REGSEN system, as it is only available online. Incomplete information on tumors, as several cases were recorded based on the services registry, and the use of the REGSEN reserved exclusively for registrars. Despite these difficulties, some structures, such as the Grand Yoff General Hospital, had complete records from 2010 to 2014 due to their organization and the commitment of the various stakeholders.

Furthermore, analysis of the tumor registry in Senegal shows that, although operational, it remains hospital bases. Indeed, Senegal lacks a population bases cancer registry (8–10). In addition, the system also suffers from a lack of dedicated funding, making it difficult to sustain registration activities, staff training, and regular supervision (10).

Challenges are encountered in implementing cancer registries, as evidenced by the example in Nigeria, and how to overcome them through training, mentoring, scientific and logistical support, and awareness-raising, which are essential for maintaining cancer registration programs in low- and middle-income countries (LMICs) (7). Standardizing the registration process and improving data completeness are also important, as is political and financial support to maintain the registry (8).

The establishment of a national registry of cancer is essential to improve cancer control through the provision of accurate data on cancer incidence, prevalence, and mortality. This information is crucial for planning health services, allocating resources, and evaluating public health interventions (7, 11).

To date, studies thoroughly exploring the implementation of the registry in Senegal are very limited. This Knowledge gap hinders the clear identification of areas for improvement study involving multiple levels stakeholders. The objective of this research was to conduct an assessment of the implementation of the national cancer registry in Senegal in 2022, in order to inform the next steps.

This study analyzed the perspectives of stakeholders at multiple levels (national, organizational, implementer). Specifically, the aim was to evaluate the lessons learned from previous efforts in implementing the National Cancer Registry in Senegal in 2022; to analyse the organizational context, organizational readiness, and leadership capacity in relation in 2022; and to assess the structure, process, and capacity of Senegal's National Cancer Registry in 2022 in order to inform future program strengthening.

2 Methods

2.1 Study population

We conducted a case study using a mixed-methods (Quantitative + Qualitative) design. A cross-sectional survey of participants at several levels was conducted, followed by interviews with key informants. The study concerned one of the hospitals in Dakar (Aristide Le Dantec Hospital) and one of the regional hospitals (Thies Hospital). The population were included Ministry of Health (MOH) officials, Hospital administrators, heads of cancer clinical departments and hospital/registry office staff. Subjects were included in the study if they were: (1) Senegalese citizens aged 18–65; (2) willing to participate in survey assessments and individual interviews; data were collected using exhaustive sampling. Data were collected from four sampled of participants defined according to a non-probability sample. Within each of the four key information groups, intentionally selected for their specific roles. (A) Ministry of Health (MOH) officials (n = 6), (B) Hospital administrators (n = 6), (C) heads of cancer clinical departments (n = 10), or (D) hospital/registry office staff (n = 20). The total of target participant was 42.

For the qualitative approach, we used the purposive (intentional) sampling method. Qualitative interviews were carried out among a subset of participants. The sample targeted heterogeneity in age, ethnic origin, and gender, and was sufficient to achieve data saturation. Participants included: National Cancer Registry team at the Ministry of Health (n = 2), senior managers of the hospitals involved (n = 2), cancer department managers (n = 4) and registry staff/clinicians (4). A total of 18 interviews were conducted. Data for saturation was observed when the interviews for each professional category began to produce redundant information and no new information emerged.

2.2 Data collection

The interviewers were trained in the use of the data collection tools and the method of data collection, and the tools were pre-tested to ensure their effectiveness. Quantitative data collection took place through individual surveys of participants. Where participants had a computer and an internet connection, the survey was self-administered using REDcap software. For the others, face-to-face interviews were carried out, with the exception of one participant consulted by telephone due to his unavailability. Questionnaires were completed in private locations, with a member of the research team reading the questions in French. Responses were entered in duplicate (on a tablet and on paper), and anonymity was guaranteed. For this survey, specific questionnaires were developed for each of the four target groups: (A) Ministry of Health officials, (B) hospital executives, (C) hospital administrators, and (D) clinicians, staff or registrars. These collection tools were used to gather a variety of information, including demographic characteristics, leadership, organizational readiness and organizational context. Similarly, for the qualitative data, 18 semi-structured face-to-face interviews were conducted. Patients shared their views on various aspects such as usefulness, contextual relevance, credibility, sustainability, and integration of the program. The interviews took place in the participants' departments in Thies (5 days) and Dakar (14 days). Data were collected using pre-developed interview guides. Finally, the data collected were stored and shared electronically via a secure account on the Box online platform, in compliance with industry standards (Statement on Standards for Attestation Engagements–SSAE 16 and International Standard on Assurance Engagements (ISAE 3402)). Only approved members of the research team, in accordance with the protocol, have access to this data, guaranteeing its security and confidentiality.

2.3 Data analysis

Descriptive statistics were calculated at baseline on organizational context and readiness, as well as leadership capacity regarding the deployment, extension and sustainability of Senegal's National Cancer Registry. Characteristics of administrators and the study population were tabulated and stratified by stakeholder type to assess differences between these groups. Additionally, two research assistants collected and transcribed the data from the individual interviews. The data was coded by a socio-anthropologist researcher. A hybrid (deductive and inductive) thematic analysis approach was used, drawing on the theoretical framework of the normalization process (coherence, cognitive participation, collective action and reflexive monitoring). Rapid ethnographic assessment (REA) was used to explore the beliefs, attitudes and experiences of managers, administrators and staff, in order to adapt the registry program to the local context. Data were transcribed in encrypted form, and managed via Dedoose, following recommended strategies for data organization and analysis. The corpus of these transcribed interviews was used in the analysis and interpretation of the data. To make sense of the interviewees' various ideas, a thematic analysis was carried out. This consisted first of thoroughly rereading the textual data and coding it to generate themes. Similar themes and sub-themes were then grouped together. This exercise enabled us to obtain code books for the focus groups and individual interviews. Once the labeling process was complete, the synthesis of the report was facilitated by the narratives and examples from the interviews. Analysis was carried out using (Qualitative Data Analysis) QDA Miner software for improved management and interpretation.

Interview guide topics

• Support from hospital staff for implementing CaReg in Senegal
• Challenges faced by healthcare facilities in implementing CaReg
• Impressions on the use of CaReg data
• Recommendations on the use of data and its importance in decision-making

The project is guided by a research partnership comprising the Senegal Ministry of Health and Social Action (MoHSA), Cheikh Anta Diop University in Dakar (UCAD), and the University of Illinois Chicago (UI). This human subject research has been approved by the UIC Cancer Center Protocol Review Committee, the UIC Institutional Review Board, and the National Ethics Committee for Health Research at the Senegal MoHSA (SEN22/55). Research reported in this publication was supported by BIO Ventures for Global Health. This research was also supported in part by the Department of Family Medicine and the Center for Global Health at the University of Illinois at Chicago.

3 Results

3.1 Socio-demographic characteristics

A total of 41 individuals were surveyed, 18 of them women (Table 1). In addition, the respondents were distributed as follows: seven (7) MoHSA agents, 20 hospital administrators or department heads, and 14 clinicians or registrars. The respondents were distributed as follows (7 at MoHSA, 18 at the Thies regional hospital and 16 participants at the Aristide Le Dantec hospital, 48.8% (20/41) hospital administrators or department heads and 34.1% (14/41) personals clinicians or registrars.

Table 1. Distribution of informants by gender.

This study revealed that the staff surveyed held the following positions: Director of the Research Planning and Statistics Directorate, Director of the Disease Control Directorate, Head of the Non-Communicable Disease Control Division, Cancer Registry Coordinator, Cancer Registry Manager, Head of the Cancer Office, Head of the IT Unit, Hospital Directors, Heads of Cancerology, Hematology Biology, Anatomy Pathology Laboratory, Oncology-Pediatrics, Gynecology, Nursing, Administrative and Financial, Principal Material Accountant, Doctors, Head of the Medical IT Unit, Head of the Chemotherapy Unit, Reception Manager, Chemotherapy Nurse Assistant, Focal Point, Management Controller, Nurse Registrar, IT Specialist, Data Manager, Medical Secretary, Ward Supervisor.

3.2 Leadership

Four members (4/7; 57.14%) of the MoHSA registry team and 11 (11/20; 55.00%) hospital administrators/clinical service leaders agreed on “The existence of clearly established standards for the implementation of the Cancer Registry in Senegal”. With regard to the statement that “key stakeholders have collectively developed a feasible plan to facilitate the implementation of a Cancer Registry in Senegal”, all MoHSA team members and seven (7/20; 35%) of hospital administrators/clinical service leadership agreed (Table 2).

Table 2. Key informants' opinions on the leadership of the national cancer registry in Senegal.

Regarding the statement “The currently accepted plan addresses and removes all major obstacles to the implementation of the Cancer Registry in Senegal”, all MSAS members (7/7; 100%) and five (5/20; 25%) hospital administrators/clinical services leadership agreed. In addition, all MoHSA registry team members (7/7; 100%) and half (10/20; 50%) of the hospital administrators/clinical services leadership agreed with the following statements: “There is clearly a designated leader/contact person for the implementation of a Cancer Registry in Senegal” and “The designated leader/contact person is able to adequately answer questions about the implementation of a Cancer Registry in Senegal” (Table 2).

All members (7/7; 100%) of the MoHSA registry team and 40% (i.e., 8/20) of hospital administrators/clinical department leaders agreed with the statement “The designated leader/contact person is fully aware of the details of implementing, managing and maintaining a Cancer Registry in Senegal”. Moreover, according to one interviewed: “In each department, I think we should perhaps designate a person in charge or a focal point in relation to this registry, and try to involve everyone in the process. The focal point is the one who will be responsible for boosting the use of this register” (Table 2).

However, only 30% (n = 7) of hospital and clinical administrators agreed on the following statement: “the existence of an adequate and clear process enabling stakeholders to collectively respond to challenges in a timely manner as they arise” (Table 2).

3.3 Organizational preparations for implementation of the national cancer registry

On the subject of prioritization, the results of the research revealed that 64.29% (i.e., 9/14) of clinicians and 50% (i.e., 10/20) of hospital administrators agreed with the statement that “a full commitment from hospital administrators is necessary in the implementation of a Cancer Registry in Senegal”. What's more, in the words of one department head interviewed, “All the conditions were in place, thanks to the availability of a high-performance information system, RegSen [Registre of Senegal], which enabled data to be recorded directly and reliably” (Table 3).

Table 3. Key informants' opinions on organizational preparation for the implementation of the national cancer registry in Senegal.

In addition, 50% (n = 10) of hospital administrators/clinical department heads felt that “motivating hospital administrators to implement a Cancer Registry in Senegal” should be a priority. Moreover, 30% (i.e., 6/20) of hospital administrators felt they were fully able to communicate the benefits of implementing the Cancer Registry to their staff (Table 3).

In terms of resources, there was a range of agreement among clinician registrars that hospital administrators had the human capacity (6/14, 42.86%), financial resources (3/14, 21.43%), materials and equipment (4/14, 28.57) needed to implement the national cancer registry in Senegal. At the same time, over 30% (i.e., 6/20) of hospital administrators/clinical department leaders agreed that “hospital administrators have the human capacity, financial resources, materials and equipment needed to implement a cancer registry in Senegal” (Table 3).

3.4 Organizational context for the implementation of the National Cancer Registry

When it came to the recognition of evidence-based practices, around a third of hospital administrators and clinician registrars agreed that “hospital staff who work with the Cancer Registry are held in high esteem”. Furthermore, with regard to selection for evidence-based practices, 25.00% (i.e., 5/20) of hospital administrators and 57.14% (i.e., 8/14) of clinician registrars agreed that “Previous experience of hospital staff in tasks associated with the maintenance of a Cancer Registry”. Similarly, 20% (i.e., 4/20) of hospital administrators agreed that “Training of hospital staff on the Cancer Registry”. Indeed, according to some researchers interviewed: “Once these registers have been set up, training is needed to make them sustainable, and to exploit the data so that long-term policies can be put in place to curb this phenomenon” (Table 4).

Table 4. Opinions of key informants regarding the organizational context of the implementation of the national cancer registry in Senegal.

With regard to educational support, 35% (i.e., 7/20) of hospital administrators fully agreed with: “there is an adequate training plan in place for implementers to ensure that they manage all the tasks of a Cancer Registry in a comprehensive and timely manner”, as well as “there are adequate training materials to support the day-to-day work of a Cancer Registry”. Similarly, 35.71% (i.e., 5/14) of clinician registrars fully agreed with the statement that “there is a plan for periodic workshops and seminars to ensure that all administrators and staff are fully aware of all the requirements for running a successful Cancer Registry, including updates, improvements and success reports” (Table 4).

4 Discussion

The evaluation of the implementation of the national cancer registry in Senegal was carried out with 41 participants, divided between agents from the MoHSA (7), hospital administrators/heads of department (20) and clinicians/registrars (14).

The interpretation of the results highlights structural organizational, and human challenges that go beyond a simple description of the data collected. These difficulties lack of sustainable funding, insufficient training, fragmented governance, and inadequate technological tools are not unique to Senegal but are part of a pattern widely documented in Sub-Saharan African countries (12).

The results show that only 25% of hospital administrators, com 75.14% of clinician registrars agreed on the inclusion of previous hospital staff experience in the tasks associated with maintaining a Cancer Registry. This demonstrates a partial consensus on the value of prior experience in the implementation strategy. However, the literature clearly emphasizes that field expertise and adequate staff training are essential to ensure the quality, completeness, and reliability of cancer registry data (5, 12).

This research revealed that only 21% to over 40% of clinician registrars and hospital administrators agreed that hospital administrators had the financial resources, materials and equipment necessary to implement a national cancer registry in Senegal. Indeed, despite the importance of local cancer data, many existing registries did not have the technical (13) or financial (14) resources to collect complete data in Senegal. Cost estimates from a recent study on cervical cancer screening and treatment in Senegal highlight the financial implications of cancer control activities within the health system (22). Financial constraints were the main challenge observed during the implementation of the cancer registry. According to a member of the NCDs Division team, the cessation of WHO financial support led to a drop in registrar motivation, compromising the continuation of activities. Some of them also point to other causes, notably the lack of monitoring and evaluation, as well as a lack of organization. Similarly, the experience in Nigeria shows that even with an organized system, the sustainability of the registry depends on dedicated national funding, partner support, and stable institutional mechanisms (15). Furthermore, in Uganda, activity-based analysis by Maciosek et al. revealed high costs related to trained staff, travel to collect data, and the need for specialized software (16).

Furthermore, although training sessions had been set up, only 30% of hospital administrators and 28.57% of clinician registrars agreed on the existence of adequate staff training for the implementation of the cancer registry in Senegal. Moreover, a management controller at Le Dantec Hospital emphasized the need to expand staff training. These findings are consistent with those of Brenda Mallon and al. who also identified a need for staff training for the implementation of a childhood cancer registry in Dakar (8). Izquierdo et al. (13) also stressed the need for adequate staff training when setting up cancer registries. Indeed, thorough and regular training of staff is essential to guarantee the quality and durability of the data collected (17). Indeed, within the cycle of a learning healthcare system, high-quality data is a fundamental lever for producing actionable knowledge (Data to Knowledge). In addition, these data are used by health planners, researchers, policy-makers and the public to guide prevention efforts and monitor cancer trends (4).

All MoHSA officials indicated that the implementation and supporting staff should be managed by hospital administrators. This underlines the key role played by hospital administrators in the leadership, oversight and management of the registry. Indeed, as the manuscript “Cancer registration: Principles and Methods” from the World Health Organization and the International Agency for Research on Cancer points out, the success of a cancer registry depends not only on high-quality data, but also on support for the staff involved in data collection (18). Indeed, according to the results of individual interviews with facility managers, the implementation of the cancer registry has mobilized strong commitment from key players, notably hospital doctors and professors, the Ministry of Health as the lead entity, and the technical partners involved in the process.

Furthermore, this study shows that stakeholder efforts were recognized and appreciated by 85.71% of Ministry of Health members and 45% of hospital administrators/clinical service leaders. These results are comparable to those of Petkovic et al. (19), who argue that stakeholder engagement is a key factor in the development and implementation of guidelines. It is therefore essential that all stakeholders, including the country's political decision-makers, local authorities, community partners, key opinion leaders and local experts, are involved, as this guarantees the success and sustainability of the project (18, 20).

In addition, all Ministry of Health officials agreed on the need for the collective development by key stakeholders of a workable plan to facilitate the implementation of a Cancer Registry in Senegal. These results underline the importance of proactive leadership in management as a key factor in the success of the project (18). Indeed, research on cancer registration in sub-Saharan Africa showed that a lack of coordination and leadership, tainted by mismanagement and corruption, constituted a major challenge to collection (12).

With regard to selection for evidence-based practices, this research revealed that 75.14% of clinician registrars agreed on the need to include the previous experience of hospital staff in the tasks associated with maintaining a Cancer Registry. This observation is in line with the findings of Pisansky et al. (20), who emphasize that the most effective strategies and approaches are those derived from evidence-based processes, including all studies and results deemed relevant. This ensures optimal implementation of healthcare interventions. However, it is worrying to note that only 20% of hospital administrators surveyed fully endorse the statement that “there is a plan for periodic workshops and seminars to ensure that all administrators and staff are fully aware of all the requirements to run a successful Cancer Registry, including updates, improvements and success reports”. This falls well short of the requirements of the National Cancer Registry Program (NPCR), which insists on adherence to registry standards such as quality, completeness and timeliness in data collection (21).

5 Limitations

This study is essentially limited to a descriptive analysis, without recourse to in-depth statistical tests. The results presented are therefore based on findings supported by qualitative analysis, and do not allow statistical relationships between variables to be established. This calls for further investigation in future research. The relatively small sample size limits statistical power and restricts the scope of the conclusions. Furthermore, the self-reported nature of the data exposes the study to potential social desirability bias, leading to a tendency to conform to perceived expectations. Additionally, in 2014, most of the facilities visited faced challenges in data collection and medical record archiving, except for a few institutions such as the Curie Institute and the Grand Yoff General Hospital. For example, Youssou Mbargane Diop Hospital in Rufisque had no internet access, which made it impossible to use the online registry on-site, forcing the registrar to work from home. Finally, the generalizability of the results remains limited, as the observations cannot be extrapolated to the entire population. It should be noted that this study coincided with the relocation of Le Dantec Hospital, which led to the transfer of certain services to Guediawaye Hospital. This situation was not conducive to meetings between the various stakeholders.

6 Conclusion

This study revealed that the actors involved in the implementation of the cancer registry are aware of its importance for the development of public health policies and the implementation of preventive actions. This scaling up would contribute to having a broader vision of what is happening on the ground. However, the implementation of the registry in only certain structures leads to fragmented data. Thus, it would be necessary to capitalize on the data of private structures in order to have complete information and to pool efforts. However, to achieve these objectives, it is imperative to mobilize human, financial and material resources necessary for the implementation and sustainability of the registry. It is also crucial to ensure the capacity building of hospital administrators and registrars, to designate focal points as well as motivated registrars, in order to guarantee adequate surveillance and management of cancer data. Indeed, the sustainability of the registry will also depend on the establishment of solid mechanisms for tracking and monitoring activities related to its management.

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Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fcacs.2026.1720333/full#supplementary-material

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Footnotes

Edited by: Petar Ozretić, Rudjer Boskovic Institute, Croatia

Reviewed by: Yuhang Wang, South China University of Technology, China

Shubharanjan Jena, Regional Medical Research Center (ICMR), India

Footnotes

CDC, Centers for Disease Control and Prevention; NCDs, non communicable diseases; IJC, Joliot Curie Institute; MoHSA, Ministry of Health and Social Action; WHO, World Health Organization.