Introduction

Global cancer survivorship

In 2020, there were an estimated 19.3 million new cancer cases, and the global cancer burden is expected to increase to 28.4 million cases in 2040 [1]. Much of this increase is expected to occur in low- and middle-income countries (LMICs) due to demographic trends, an increase in carcinogenic exposures, and lifestyle changes. Simultaneously, the number of cancer survivors globally is increasing because of improvements in cancer detection and treatment [2, 3].

One region experiencing this dual shift in cancer burden and cancer survivorship is Africa. Approximately 1.1 million people were diagnosed with cancer in Africa in 2020, and the age-standardized incidence rate across the continent is 132.1 cases/100,000 population [4]. The capacity to detect, diagnose, and treat cancer varies across and within countries in the region, as does access to post-treatment follow-up and supportive care [5]. While survivorship care guidelines and care plans exist and some have been adapted to the region [6], limited data exist to document the numbers of cancer survivors, uptake of these guidelines, and tracking of forms of survivorship care delivery, including through the work of local patient support and advocacy groups and faith-based organizations.

The US National Coalition for Cancer Survivorship (NCCS) defines a cancer survivor as anyone “living with, through, and beyond a cancer diagnosis,” inclusive of the entire cancer continuum [7]. Meanwhile, the US Institute of Medicine, now the National Academy of Medicine (NAM), identified the period after an individual completes cancer treatment as the survivorship period in their 2006 report, From Cancer Patient to Cancer Survivor, Lost in Transition [8]. The report called out ten specific recommendations to improve the quality of survivorship care: raising awareness for survivorship, implementing survivorship care plans, utilizing evidence-based guidelines, developing and implementing quality measures, improving models of coordinated care, elevating survivorship as a public health concern, increasing healthcare professional capacity, addressing employment-related concerns, adequate and affordable health insurance, and increasing investments in research [8]. While these recommendations were focused on the delivery of quality survivorship care in the USA, there is an opportunity for policymakers and cancer planners to consider their relevance to the growing populations of cancer survivors globally — especially in Africa. The NAM recommendations can provide critical benchmark data for quality improvement efforts and inform decisions on addressing resource needs in LMICs.

For the purposes of this study, the term “cancer survivor” is used in accordance with the NCCS definition, with the recognition that individuals who have experienced the diagnosis of cancer may choose to identify themselves using different terms.

National cancer control plans

One way to guide implementation of the NAM recommendations in a country is through national cancer control plans (NCCPs). In 2017, the World Health Organization (WHO) urged member states to develop and implement NCCPs as a critical way to address their national cancer burden and to establish priorities in cancer control [9]. The NCCP acts as the framework for a country’s national cancer control program, which oversees the implementation of all cancer prevention and control activities. In 2019 Jacobsen and Mollica recommended increasing the number of NCCPs that include survivorship care as one of their four recommendations to strengthen cancer survivorship care globally [10].

A 2018 global review of NCCPs and non-communicable disease plans (NCDPs) examined the content of plans from 158 countries to determine which of 15 aspects of cancer-related care, including survivorship, were included [11]. Findings indicated that only 32% of NCCPs and NCDPs addressed survivorship care, and only 17% of the NCCPs and NCDPs in WHO’s Africa region. The importance of a country having a NCCP is underscored by evidence that survivorship care was addressed almost exclusively in countries that had a NCCP (97%) as opposed to countries that only had a NCDP (3%). Particularly striking, though not surprising given resource variation were differences between countries based on income levels. Whereas survivorship care was addressed in NCCPs or NCDPs for 60% of high-income countries, it was addressed in plans for only 17% of upper-middle income countries, 26% of lower-middle-income countries, and 13% of low-income countries [11]. Although useful, this review provided few details about the specific aspects of survivorship care addressed in the plans.

A more recent review analyzed survivorship objectives as represented in comprehensive cancer control plans in states and territories in the USA and utilized the NAM survivorship recommendations as a framework for analysis. Results demonstrated that the most prevalent domains addressed by plan objectives were raising awareness, the existence of survivorship care plans, healthcare professional capacity, and models of coordinated care [12,13,14,15]. The USA state cancer control plan analysis provided a model to inform the methods applied in the current analysis outlined in this paper.

Cancer survivorship and NCCPs in Africa

As the burden of cancer and the number of cancer survivors increases globally, many countries, including several in Africa, have followed WHO recommendations to develop and implement NCCPs. In 2018, just 11 countries in Africa had publicly-available NCCPs, and by 2022, 28 countries in Africa have either a current or recently expired NCCP [16, 17].

The Africa Cancer Research and Control ECHO® (Africa ECHO) is a virtual community of practice of researchers, practitioners, policymakers, patient advocates, and program implementers focused on cancer research and control in Africa. In September 2020, the Africa ECHO held a series of sessions on cancer survivorship. The community identified the topic as an area requiring more attention, and as a result, the Africa Survivorship Working Group was formed. Among other projects, this informal body of stakeholders seeks to conduct a 360° situational analysis to understand current practices and needs to inform recommendations to strengthen survivorship care in the region from the patient, caregiver, clinician, and policy levels. The current analysis has the potential to fill an important gap, as there is limited research reviewing survivorship care in Africa with a focus on policy development and implementation.

Objective

The aim of this study was to examine how survivorship care is currently represented in NCCPs in Africa and to disseminate the findings to African regional and international collaborators including policymakers, researchers, clinicians, and survivors and their caregivers to further address and improve survivorship in NCCPs globally and specifically in the African region.

Materials and methods

We identified publicly available NCCPs on the International Cancer Control Partnership (ICCP) Portal for inclusion in this study (http://iccp-portal.org). The portal, which is maintained and regularly updated by the ICCP since 2013, brings together in one searchable platform the experience, knowledge, and best practice of leading cancer organizations and their experts for the purpose of providing policymakers and cancer planners with cancer control–specific resources and tools. The portal includes publicly available NCCPs and NCDPs from over 120 countries [16]. NCCPs were included for analysis if they were shared on the ICCP Portal as of July 2021. The most recently published NCCP was used for each country in Africa. Countries with NCDPs but no NCCP were not included, as NCDPs often do not include specific information about each element of the cancer continuum.

Six coders worked in pairs to extract specific data items from the goals and objectives sections of the included NCCPs using Microsoft Excel. Preambles and overviews of the current state of cancer in the countries were not analyzed, but all other sections were analyzed. Each coder conducted their own extraction and compared it with their partner to create a final dataset. Data were extracted in the language of the plan by native speakers (English, French, or Portuguese) and the extracted text was translated into English using DeepL® Translator (DeepL) for later analysis. Any codes based on the translated text were validated with a native speaker. The following information was extracted from each plan:

  • Definition:

    1. ○

      “survivorship”

    2. ○

      “palliative care”

    3. ○

      “supportive care”

    4. ○

      “patient navigation”

    5. ○

      “psychosocial support”

    6. ○

      “cancer continuum”

    7. ○

      “community care”

    8. ○

      “home care”

The definition and source of that definition were extracted if provided and left blank if not. The source of the definition was not extracted.

  • Strategy (includes intervention, activity, or action) related to survivorship care

  • Goal or objective that included the strategy related to survivorship care

  • Whether an indicator was associated with the strategy related to survivorship care; note the indicator itself was not extracted

  • Whether the strategy related to survivorship care was mentioned explicitly in the context of palliative care

For the purposes of this study, palliative care was synonymous with end-of-life or non-curative care. For all information, we extracted the exact text from the NCCP.

There is a significant overlap in the goals of care between palliative care and cancer survivorship. Palliative care can occur at any point after cancer diagnosis and is a key component of cancer survivorship, but there are also many aspects of survivorship that are beyond the scope of palliative care [18]. For the purposes of this study, all strategies explicitly related to palliative care were therefore extracted and noted. This differentiation allows the analysis to reveal the prevalence of palliative care-associated strategies versus non-palliative care-specific strategies in the reviewed NCCPs. Both cancer survivorship and palliative care are nascent areas in Africa, but there is greater recognition of palliative care in research, policy, and practice.

Drawing on the methodology used in the 2020 review of state cancer control plans [12], we transformed the NAM framework of recommendations [8] into ten domains used to categorize each identified strategy from the NCCPs. However, we further modified the framework for this analysis to remove US-specific references such as specific government agencies and insurance mechanisms, and to be better suited to a global context. Ideally, the NAM framework should be continually adapted whenever it is used to reflect local needs and priorities in analysis. In addition, one framework domain was added, access to medicines. This domain was added via deductive analysis after coders recognized many references to essential medicines and access to pain relief that did not fit into an existing domain in the framework. The original framework is shown alongside the modified framework in Table 1, with changes to the text made for this study noted in italics.

Table 1 Original and modified NAM framework of cancer survivorship domains
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Two coders categorized each of the strategies separately using the modified NAM framework and domains, compared and reconciled discrepancies, and consolidated results. These results were reviewed by four other coders for validation. Several strategies which could not easily be categorized were reviewed and discussed by all six coders until a consensus was reached on the most appropriate category. If strategies fit into multiple domains, the text was split until each individual strategy could be categorized into a single domain.

Results

Of 54 countries in Africa, as of July 2021, 21 (39%) had NCCPs published between 2012 and 2020 (Table 2). Eight plans were current at the time of analysis, while the remaining 13 had expired within the past 4 years but had not yet been replaced or rewritten. Across 21 plans, 202 survivorship-related strategies were identified, with all plans including at least one strategy. Of those 202 strategies, 83 (41%) had an associated indicator in the plan, and 74 (37%) were not palliative care-specific.

Table 2 List of 21 NCCPs included in the study
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Survivorship and related definitions

The definitions for key survivorship-related terms were extracted from the plans where included. The term most often defined in plans was the “palliative care,” found in 16 of 21 NCCPs, followed closely by “cancer continuum” in 12 plans. Of the 16 plans that included a definition of “palliative care,” six used the 2002 WHO definition, and two used the 1990 WHO definition [19, 20]. The remaining terms (“supportive care,” “community care,” “home care,” “patient navigation,” and “psychosocial support,”) were defined in three or fewer NCCPs. Notably, none of the four plans that provided definitions for “supportive care” used the standard definition provided by the Multinational Association of Supportive Care in Cancer (MASCC) [21]. Lastly, “survivorship” was defined only in Malawi’s NCCP, and it mirrored the National Cancer Institute (NCI) definition of survivorship as “the whole process of having cancer or living with cancer and its post-cancer treatment life to those who survive” [22, 23]. Many plans used these key survivorship-related terms but did not formally define them.

Survivorship references in strategies and objectives

Across all 202 survivorship strategies that were extracted, the most referenced domains were models of coordinated care (65 strategies across 19 plans), healthcare professional capacity (45 strategies across 16 plans), and utilizing evidence-based guidelines (33 strategies across 11 plans). In fact, models of coordinated care and healthcare professional capacity domains comprised a majority (54%) of all strategies included across the plans. The least-referenced domains were survivorship care plans (four strategies across three plans) and employment-related concerns (five strategies across four plans). All domains were referenced at least once except for adequate and affordable health insurance, which was the only domain to which no strategies were categorized.

The distribution across domains of the 74 strategies not explicitly related to palliative care followed similar patterns. Eighteen of the 21 plans contained at least one strategy not explicitly related to palliative care. A count of all survivorship-related strategies per domain is shown in Fig. 1, with the darker bars indicating all strategies, and the lighter bars indicating strategies not explicitly related to palliative care.

Fig. 1
figure 1

All survivorship strategies extracted from NCCPs, shown per domain, and stratified by palliative care

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An alternative way to view the aforementioned data is by counting the number of framework domains covered in each plan. Of the 11 domains, two plans (Morocco and Nigeria) contained 7 unique domains, while most plans included either 4 or 6 domains. When counting, only the 74 strategies not explicitly related to palliative care, the number of domains included in a NCCP ranged from 0 to 5, with a plurality of plans including only one domain. The distribution of plans by domain count is shown in Supplemental Fig. 3.

Lastly, plans were analyzed to determine the proportion of survivorship-related strategies that included associated indicators. Eighty-four total indicators were extracted from the 21 NCCPs. The specific text of indicators varied between plans and strategies but generally referred to either the establishment or expansion of something, such as palliative care facilities, the number of healthcare workers trained or engaged in survivorship care, or the percentage of the public and/or cancer survivors who received an intervention, such as a survivorship care plan or exposure to an awareness campaign. Eleven plans included a measurable indicator for at least one survivorship-related strategy, and six of those plans had indicators associated with all of their NCCP’s strategies. Of note, four NCCPs combined — Ethiopia, Kenya, Nigeria, and Zimbabwe — contained over half of all indicators associated with survivorship-related strategies. See Supplemental Fig. 4 for these results.

A summary of results by the NAM framework domains across all 21 reviewed plans is shown in Table 3. Each domain is listed along with a count of strategies per domain, the number of plans with at least one strategy in that domain, the proportions of each, and an example of a strategy that was coded to that domain and the plan in which it is included. Models of coordinated care was the most common domain across all measurement columns, followed by healthcare professional capacity. Strategies coded to survivorship as a public health concern only made up 8% of all strategies, but these strategies were well-distributed across plans, with at least one included in 12 (57%) different plans.

Table 3 Summary of results across all NCCPs and all NAM framework domains
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The supplementary material includes data about the distribution of domains and strategies across individual country plans and more information about the subset of strategies not explicitly related to palliative care.

Discussion

This study serves as a baseline for how survivorship care is currently represented in 21 NCCPs from Africa, as mapped to a modified NAM framework for improving the quality of survivorship care. The results of this study demonstrate that there is a foundation already present in many NCCPs that can be built upon to implement and expand survivorship care in African countries, but more dedicated work and attention are needed to encompass all aspects of survivorship care. These results can inform efforts to strengthen components of such care in NCCPs, and ultimately enhance the implementation of survivorship and supportive care for individuals and communities. It is promising that all 21 plans reviewed included at least one survivorship-related strategy.

Survivorship and related definitions

Providing definitions in NCCPs is important to clarify the objectives and activities included in each part of the plan. The use of shared, standardized definitions across plans encourages mutual understanding of these elements, facilitates plan comparisons, and allows countries to better exchange information and best practices. Defining “cancer survivorship” is particularly important, as the term was only introduced with its current meaning in 1986, after the NCCS recognized a need for a common language to discuss survivorship issues and for survivors themselves to name their shared experiences [24]. While some plans included such definitions as described earlier, the degree to which NCCPs used standard definitions varied between key terms. It is highly recommended that NCCPs include definitions of key terms that align with standard definitions from multilateral institutions like WHO, and to specifically clarify the differentiation between survivorship care and palliative care to ensure that survivorship care objectives are not limited to end-of-life care objectives.

Trends and patterns among plan strategies

There were several patterns within or across plans that merit focused discussion. Only 37% of survivorship-related strategies in the NCCPs were not specific to palliative care, which suggests that a comprehensive recognition of survivorship as a dedicated element of the cancer care continuum is not yet present in most NCCPs of African countries. Choosing wisely Africa’s campaign for value-based cancer care and the work of the Africa Palliative Care Association (APCA) on psychosocial support over the past 20 years have contributed to increased awareness and policies related to palliative care in Africa [25, 26]. Palliative care is an important component of survivorship and merits specific focus in an NCCP. Cancer cases in the region often present at a late stage, which may explain the emphasis on palliative care services. However, increasing access to cancer treatment facilities and improvements in effective treatments may lead to a growing number of individuals living longer beyond their initial cancer diagnosis. Therefore, a dedicated component on follow-up survivorship care and post-cancer diagnosis and/or treatment (as presented in the adapted NAM framework) should be recognized, included, and implemented.

Similarly, there were limited survivorship-related strategies (84 or 40%) with an associated measurable indicator. Plans tended to include indicators for every strategy or no strategies, so this should be addressed among all contributors to an NCCP to ensure the inclusion of indicators throughout the plan. The inclusion of indicators is important to monitor the translation of policy to practice. While the 2018 global review of NCCPs did not count individual indicators in plans, it found that 70% of countries reported at least one target related to their cancer control goals but standardization of indicators to monitor progress was needed. Process evaluation reports from the four countries that had indicators attached to all of their survivorship-related strategies (Ethiopia, Nigeria, Senegal, and Zimbabwe) could be used to determine whether their strategies were successful and inform the initiation of similar survivorship strategies in other settings. In addition, further analysis of the specific indicators by domain and feasibility of measurement could be beneficial.

Another notable pattern was the high prevalence of strategies in the domains of models of coordinated care and healthcare professional capacity. Strategies referring to models of coordinated care included strengthening referral networks, integrating services into the health system (particularly for palliative care-related strategies), building capacity at the primary care level, and empowering the community and community health worker system to support survivorship care. This emphasis on integration and coordination of services indicates the priority of building on the existing healthcare system, in line with WHO guidance for health system strengthening [27]. As the majority of strategies in this domain (63%) are palliative care–specific, future NCCPs can include detailed survivorship care components and how to integrate them into the existing system.

According to the WHO, health workforce spending accounts for 57% of total health expenditure in the African region [28]. This aligns with the significant emphasis on healthcare professional capacity within the NCCP strategies for survivorship care. Further exacerbating the situation is a worldwide oncology workforce shortage that is even more pronounced in Africa, in part due to the lasting effects of colonialism [29]. Strengthening the health workforce in Africa is key to providing care for individuals across the cancer continuum and is a critical element to include in a NCCP [27]. However, a listing of survivorship-specific training and capacity-building components (including components like patient navigation and psychosocial support) was rarely referenced in the 21 NCCPs and should be further developed for reference in future NCCP development.

Conversely, none of the 21 NCCPs included survivorship strategies in the domain of adequate and affordable health insurance, even under our modified description that relates this domain more broadly to health financing, regardless of a country’s health coverage structure. It is possible that reference to patient financing and universal health coverage is referenced elsewhere in the NCCP which was not analyzed in this study or in other documents such as national health insurance policies or white papers. For countries that did not include health financing in the NCCP, this should be addressed in future plans as it is an important aspect of cancer survivorship. For example, a study in the USA found that cancer survivors who reported medical financial hardship had a higher adjusted mortality risk than those without financial hardship [30], and two recent systematic reviews found that nearly 50% of cancer survivors in the USA and 57% of survivors across 17 LMICs reported experiencing financial distress because of their cancer treatment [31, 32]. Even in countries nearer to universal health coverage, (e.g., Australia) cancer survivors may pay up to $22,000 out of pocket for treatment, and Australian patient advocacy groups have proposed the creation of a safety net and accompanying patient navigation and financial concierge system to address this challenge [33, 34].

Notably, 38% (eight of 21) of the plans mentioned access to medicines in the context of palliative and survivorship care, which is above the global average of 30% reported in Romero and colleagues’ 2018 global review [11]. More recently, Razis et al. showed that the inclusion of the national essential medicine list (EML) was positively associated with palliative care strategies in NCCPs [35]. This finding, along with the Lancet’s commission on palliative care and pain relief which identified including opioids in national EMLs as a fundamental step towards improving access to essential medicines globally, demonstrates that access to medicines has been considered crucial to palliative care and survivorship strategies [36]. National cancer control planners should include in their strategies a plan to manage medications, supplies, and devices that ensures the availability of opioids and other medications for pain control.

It may be useful to consider the results of this study in the context of the previously referenced review of survivorship objectives among comprehensive state cancer control plans in the USA, which also utilized the framework of the NAM survivorship recommendations [12] but did not analyze the inclusion of definitions for key terms or indicators of progress on survivorship-related strategies. These results similarly demonstrated that the most common domains addressed were models of coordinated care and healthcare professional capacity, signaling a commitment to improving the quality of survivorship care delivery. Conversely, domains such as employment-related concerns, developing and implementing quality measures, and research investments were less represented in the US review. Lastly, the analysis of NCCPs in Africa found that most survivorship objectives were focused on palliative care. The fact that palliative care objectives were also present in the US analysis, albeit to a lesser extent, signals the need to consider supportive care needs from the point of diagnosis forward for all individuals impacted by cancer.

Implications and opportunities

Along with the domain-specific recommendations included above, this research has implications for policymakers, clinicians, and researchers; and thus, implications for survivors and their caregivers. First, the results of this study are intended for use by countries seeking to include more concrete survivorship care priorities in their NCCPs. This work has generated country-level, comparative data regarding the current state of survivorship care documented in the NCCPs and could provide cancer planners with a framework for the inclusion of context-relevant components to improve survivorship care when crafting their national strategies. Policymakers can further discuss findings from this study with the Africa survivorship working group, which provides a forum for knowledge exchange and technical guidance. Similar fora are beneficial for convening stakeholders from various perspectives, including clinical, research, policy, and advocacy.

This research can also be shared with clinicians in the region to increase their awareness of cancer survivorship as an important aspect of the cancer continuum. Countries can develop and adapt training modules on survivorship and patient navigation as part of the integration of survivorship into primary and specialty care [37, 38]. Proven learning and guided practice models, such as the extension for community healthcare outcomes (ECHO) platform, can be used to build a community of clinicians engaged in survivorship care and a community of survivors (both in-country and between LMICs) to benefit from such care, [39, 40] and can be used for quality improvement of survivorship care implementation and outcomes [41].

Lastly, the global review of NCCPs performed in 2018 served as a starting point for analyses of NCCP content, and this review provides a more in-depth analysis of a particular aspect of NCCPs. Researchers can build on this study by adapting its methodology to other focused sub-analyses (e.g., breast cancer or reference to surgical care). Further research could also include an analysis of the authorship of NCCPs, with a particular eye towards the amplification of survivors’ and caregivers’ voices and local authors more broadly. As part of a comprehensive look at current practice and policy and set against an evidence-based framework, this study provides a baseline to inform future policies and plans and to track progress towards strengthening cancer care delivery.

Limitations

There are some limitations to this study. First, although implementation of NCCPs was not an objective of this study, it is important to recognize that the inclusion of survivorship-related objectives, strategies, and indicators in an NCCP does not equate to implementation of those policies and serves only as an indicator of intent and prioritization. Second, this review is not inclusive of all national documents which may contain survivorship-related strategies. Only publicly available NCCPs were reviewed, though other countries may have non-public or in-progress versions of their NCCPs. Many countries publish non-communicable disease plans, which may include survivorship-related objectives for a broader subset of diseases. Third, it is possible that survivorship-related content was omitted from extraction if it was unclear or located in an unexpected section of the NCCP, but it is also possible that content was “over-extracted” due to researcher bias and a desire to find results. The lack of researcher representation from all countries of the included NCCPs may have also introduced some interpretation bias. To mitigate this, each NCCP was reviewed by at least two researchers. Lastly, the strategies were not assigned a weight or counted any differently within or between NCCPs. Strategies requiring significantly different amounts of time, human resource capacity, and financing were all counted equally throughout the analysis.

Conclusion

Survivorship is an important part of the cancer control continuum and is increasingly relevant in Africa due to the rise in cancer burden, improvement in access to cancer diagnosis and treatment, growing public awareness about cancer survivors’ needs, and increase in cancer survival rates. This study helps identify the current state of survivorship as a priority among national cancer control plans in the region. Policymakers can use these results as strategies to follow and fill gaps in their current or future NCCPs. Policymakers should ensure that all eleven domains of the modified NAM framework for cancer survivorship are addressed in their NCCPs and done so outside of the context of palliative care. Attention to resources available to successfully implement and sustain such policies is critical. Further research should evaluate the implementation of survivorship-related strategies in-country and its impact on survivorship care and the lived experience of survivors and those who support them, including caregivers, clinicians, and advocates.