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Epidemiology
Protocol
Patient journey and timeliness of care for patients with breast cancer in Africa: a scoping review protocol
  1. Anteneh Ayelign Kibret1,2,
  2. Heng Jiang1,3,
  3. Haifeng Yang4,
  4. Chaojie Liu1
  1. 1School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia
  2. 2Department of Human Anatomy, University of Gondar, Gondar, Ethiopia
  3. 3The University of Melbourne School of Population and Global Health, Melbourne, Victoria, Australia
  4. 4Hubei University of Chinese Medicine, Wuhan, Hubei, China
  1. Correspondence to Anteneh Ayelign Kibret; antesha04{at}gmail.com

Abstract

Introduction Cancer is the leading cause of death worldwide, with breast cancer being one of the most commonly diagnosed types. Low-income and middle-income countries account for nearly half of all breast cancer cases and related fatalities. In Africa, mortality rates are higher and survival rates are lower compared with developed countries. Timeliness of care is a critical aspect of healthcare, but various studies and healthcare systems use different criteria and methods to measure it. Assessing the breast cancer care pathway and understanding the determinants of delayed care are essential for effective interventions. Therefore, this scoping review aims to evaluate the methods used to measure the timeliness of breast cancer care, identify specific points in the care pathway where delays are most frequently reported, and examine the factors affecting the timeliness of breast cancer care in Africa.

Methods and analysis We will conduct this scoping review using the Arksey and O’Malley framework endorsed by the Joanna Briggs Institute. A scoping review of articles written in English concerning the timeliness of breast cancer care in the African context will be undertaken. Six electronic databases (MEDLINE, EMBASE, CINAHL, SCOPUS, WEB Of SCIENCE and PsycINFO) will be searched to identify published literature on timeliness of breast care in Africa. Two reviewers will independently screen the articles at both the abstract and full-text stages, guided by predetermined inclusion and exclusion criteria. The full texts of identified studies will be further examined and charted using a data extraction form guided by the Model of Pathways to Treatment framework. Publications describing the time to diagnosis and its associated factors in the contexts of breast cancer will be considered for inclusion, with no restrictions based on date of publication. Studies that are published in languages other than English and that do not focus on the timeliness of care or time-related aspects within the care pathway will be excluded. Evidence will be narratively synthesised and analysed.

Ethics and dissemination Ethical approval is not needed as this scoping review does not involve collecting data from human participants. The results produced from this review will be submitted to a scientific peer-reviewed journal for publication and will be presented at scientific meetings.

  • Breast tumours
  • ONCOLOGY
  • PUBLIC HEALTH
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2023-081256

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    Strengths and limitations of this study

    • The scoping review will capture the variations in timeliness measurement along the patient care pathway for individuals with breast cancer in African countries.

    • The review will vividly illustrate the patient journey through metro-mapping techniques.

    • The review will only include studies published in English, potentially missing out on valuable research reported in other languages.

    Introduction

    Breast cancer represents a significant global health challenge, as it is the most commonly diagnosed cancer. According to the latest global cancer burden statistics, in 2022, approximately 2.3 million women were diagnosed with breast cancer globally.1 Breast cancer affects women in every country and can occur at any age after puberty, with incidence rates increasing as women get older.2 In low-income and middle-income countries (LMICs) and low-income countries (LICs), the burden is particularly severe, with 552 623 and 71 828 breast cancer cases occurring in these regions, respectively.3 Furthermore, breast cancer is the predominant cancer type among African women, and its prevalence has been steadily increasing over the past three decades.4 According to the 2022 Global Burden of Cancer Study (GLOBOCAN) data, 198 342 breast cancer cases were reported in Africa, with 133 520 of those cases occurring in sub-Saharan Africa.3 5

    Breast cancer is the leading cause of cancer-related deaths among women worldwide.6 In 2022, it resulted in approximately 665 683 deaths globally, with around two-thirds of these fatalities occurring in less developed countries.3 As reported by GLOBOCAN in 2022, breast cancer resulted in 244 361 deaths in LMICs and 38 234 deaths in LICs. Among the LMICs, India, Indonesia and Nigeria had the highest breast cancer mortality rates. India reported approximately 98 337 deaths, Indonesia had about 22 598 deaths, and Nigeria reported 16 332 deaths from breast cancer.3 These figures reflect the challenges in healthcare infrastructure and access to treatment. In Africa and sub-Saharan Africa, 91 173 and 68 036 breast cancer-related deaths occurred, respectively.3 5 Mortality rates are higher and survival rates are lower in Africa compared with developed countries. This disparity can be attributed to a lack of adequate diagnostic and treatment facilities, leading to delays in diagnosis and treatment, and suboptimal cancer care. Over 70% of breast cancer cases in Africa are diagnosed at an advanced stage.7 8 In contrast, developed countries have effectively implemented early detection strategies, facilitated timely access to diagnosis and ensured the widespread availability of effective treatments.9

    Timely diagnosis plays a crucial role in improving patients' journey from cancer symptom awareness to treatment and enhancing survival rates.10 Unfortunately, the majority of breast cancers are diagnosed at a late stage, when treatments are less effective and more costly.11 Advanced disease at the time of diagnosis not only leads to reduced survival rates for patients but also often requires more complex and expensive treatments that may not be easily accessible to everyone. This situation limits treatment options, potentially reducing effectiveness and impacting quality of life, affecting daily activities and emotional well-being. This situation also further strains healthcare systems already facing significant challenges.12 As a result, breast cancer significantly impacts women in the prime of their lives in Africa, leading to pronounced familial, societal and economic consequences.13

    Regular health screenings, awareness of symptoms and prompt medical attention can help catch diseases in their early stages when treatments are often more effective. Early diagnosis and access to effective treatment play crucial roles in determining outcomes for patients with cancer.9 They provide several advantages, including higher survival rates, greater treatment success rates, enhanced quality of life and decreased financial burdens.14

    The care journey of patients with breast cancer is influenced by numerous factors. Delays at different stages, from screening and symptom recognition to starting treatment in Africa, are often linked to a mix of patient-related factors such as low educational attainment, limited awareness of breast cancer, use of complementary medicine, financial constraints,15 and health system-related factors like distance to the nearest healthcare centre, choice of initial healthcare provider, the number of providers consulted before diagnosis, inadequate health insurance coverage, and false-negative diagnostic tests.16

    Timely access to healthcare services has become a priority in public health policies.17 18 The time interval not only is an indicator of the accessibility of healthcare but also aids in identifying inequalities of care in patient management.19 20 Due to the absence of appropriate benchmarking to measure timeliness, different studies and healthcare systems may use different criteria and methods. This review will identify the various ways in which timeliness is assessed in African studies and the specific point of the care pathway where delays are most prevalent. Besides, by examining the factors associated with timeliness of care, healthcare providers and policymakers can develop targeted interventions and strategies to address specific issues contributing to delays in breast cancer care.

    Moreover, we have reviewed systematic21 22 and scoping reviews23 that have been done in Africa. We found that there is a scarcity of information regarding how individual studies measure the timeliness of breast cancer care, and exploration of the entire care pathway for breast cancer in Africa. This review will address the gap in the literature by providing a more holistic view of the care paths of patients with breast cancer in Africa.

    Methods and analysis

    This protocol follows the methodological framework described in the Joanna Briggs Institute Manual for Evidence Synthesis on scoping review protocol,24 which was based on Arksey and O’Malley’s methodological framework,25 Levac et al’s recommendations for applying this framework, and Peters et al’s enhancements of the framework.26 27 The proposed scoping review will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. As recommended by Arksey and O’Malley,25 the review process will consist of the following: identifying the research question, retrieving relevant studies, selection of studies, charting data, and collating, summarising and reporting evidence.

    Stage 1: identifying the research question

    This scoping review is planning to answer the following main questions:

    1. How is timeliness of breast cancer care measured in the existing literature in Africa?

    2. What factors of timeliness of breast cancer care have been studied in the existing literature in Africa?

    3. At which specific interval(s) in the breast cancer care pathway are delays most commonly reported?

    Stage 2: identifying relevant studies

    This scoping review will endeavour to address the research questions comprehensively.

    Inclusion criteria

    The scoping review will include both peer-reviewed publications including reviews (systematic review or scoping review) and grey literature (grey literature can include academic papers, including theses and dissertations, research and committee reports, government reports, conference papers, and ongoing research).

    Population

    The population of this scoping review will be adult women patients with breast cancer, diagnosed by clinicians irrespective of histological type and disease stage. The participants of included studies will:1 be women,2 be 18 years of age or older,3 have a confirmed pathological diagnosis of breast cancer,4 have reported time interval in any time point of breast cancer care.

    Concept

    We want to know when and where patients go to seek cancer care through the healthcare system, and why. Additionally, we want to understand how timeliness in seeking and receiving breast cancer care is measured in the existing literature and to identify specific points in the care pathway where delays are most frequently reported. Finally, we will examine the factors influencing the patient journey in breast cancer care in Africa.

    Context

    Studies and reports conducted in Africa.

    Publication type and status

    In order to avoid publication bias, this scoping review will encompass all pertinent research, irrespective of its publication format (such as editorials, book chapters, reports, original articles, theses, conference abstracts), study design, and its publication status (whether it is published or accepted for publication, as well as grey literature). Additionally, prior reviews addressing related subjects will be incorporated, and the reference list will be screened to identify pertinent articles.

    Language

    Given the constraints of time, available resources and translation capabilities, this review will exclusively consider studies that have been published in English.

    Timeframe

    The review will encompass all articles published in the field of timeliness and breast cancer care up to the date of the final search.

    Exclusion criteria

    The review will exclude studies that are published in languages other than English, articles that do not focus on the timeliness of care or time-related aspects within the care pathway, and those published solely as abstracts. Furthermore, studies focusing solely on men will also be excluded from the review.

    Databases

    An academic librarian was consulted on developing the search strategy. The search terms will be based on key terms relevant to ‘breast cancer’, ‘timeliness’ and ‘Africa’ (table 1).

    View this table:
    Table 1

    Identified keywords and index terms to construct search strategy for the scoping review

    An exhaustive search for potentially eligible articles will be conducted in the following databases, MEDLINE, EMBASE, CINAHL, SCOPUS, WEB Of SCIENCE and PsycINFO (table 2). The Google search engine will be used to search for editorials, reports from governments, international agencies and professional associations (WHO, African Cancer Organisation) and grey literature.

    View this table:
    Table 2

    Search strategy for different databases

    In addition, hand search will be performed for reference lists of the included literature and for any recent publications that are accepted and available online early.

    Managing references

    The search results will be imported into EndNote (V.X9), a reference management programme that facilitates the storage, display and organisation of records from each database. EndNote will also be employed to generate the reference list for the review. Subsequently, references will be imported into Covidence, a web-based software platform developed by the Cochrane Collaboration. Covidence will aid in documenting the review process, including screening for eligible articles and conducting full-text reviews.

    Stage 3: study selection

    Covidence will be used to support the review and selection of articles for data extraction. Results from the searches will be uploaded and duplicates removed. The study selection process will consist of a two-step procedure, independently conducted by two reviewers (AAK and HY). Initially, based on the predefined inclusion criteria, both reviewers will screen study titles. In the subsequent step, the reviewers will screen the abstracts of the studies that meet the initial criteria, followed by a review of the full texts. Any discrepancies arising between the two reviewers will be resolved through consensus, with the involvement of a third reviewer (CL) if necessary. A PRISMA-ScR flow diagram will be presented to offer a comprehensive visual representation of the studies that were included and excluded during the process of study selection.

    Stage 4: charting the data

    The data extraction from each eligible article will be carried out using a specifically developed standardised data extraction form. The data extraction form will be informed by the Model of Pathways to Treatment to map the identified evidence on the timeliness, and time intervals and associated factors of breast cancer.28

    Data will be extracted by the lead author (AAK). The information to be extracted from the included articles will encompass the author’s name, year of publication, country of origin, study design, research setting, study population, sample size, the various time intervals within each stage of the breast cancer care pathway, metrics to measure time interval (delay), and determinants of timeliness (table 3). To ensure uniformity and reliability in the data extraction process and to confirm that all relevant information is captured, two reviewers (AAK and CL) will independently pilot test the extraction template using a subset of the included studies. Following this pilot test, any necessary revisions to the template will be made accordingly.

    View this table:
    Table 3

    Data charting form

    During the formal data extraction phase, one reviewer (AAK) will carry out the data extraction in accordance with the objectives outlined in this scoping review, and a second reviewer (HJ) will subsequently verify the accuracy of the extracted data.

    Stage 5: collating, summarising and reporting the results

    Data synthesis will involve the creation of narrative summaries derived from the extracted information and NVivo software will be employed. The findings will be visually represented using tables, charts or graphs as appropriate.

    We will employ frequency distributions and descriptive statistics to present data related to the year of publication, country of origin, study design, research setting, study population, sample size, the metrics used by each study to measure time intervals within the breast cancer care pathway.

    Determinants linked to the duration of various intervals in the breast cancer care-seeking path will be classified in accordance with the Model of Pathways to Treatment framework and the Anderson’s Health Services framework. The Model of Pathways to Treatment framework specifies the essential events, processes and time intervals that may occur in the period prior to diagnosis and the start of medical treatment and identifies the factors that may influence each interval. The model identifies five key events in the pathway to care: detection of bodily changes, perceived reasons to discuss symptoms with a healthcare provider, first consultation with a healthcare provider, diagnosis and start of treatment. Additionally, it highlights four important intervals between these events: the appraisal, help-seeking, diagnostic and treatment intervals (figure 1).28 Andersen’s model classifies determinants of healthcare into individual and contextual characteristics and the characteristics are further grouped as predisposing factors (including demographic, health belief and social structure aspects), enabling factors (encompassing family characteristics like income and insurance coverage, community characteristics such as resource availability and proximity to care, and regional factors within the country) and need factors (comprising individual experiences of symptoms and health status).29 The two frameworks will be combined to link facilitators and barriers of cancer care to key events and intervals (figure 1). From this we will describe what factors have been studied and what are missing.

    Figure 1
    Figure 1

    Model of Pathways to Treatment and Andersen’s model of health service utilisation. HCP, healthcare provider.

    We will identify the phase of the care pathway where delays are most frequently reported. The breast cancer care trajectories in Africa will be depicted by using the metro-mapping method,30 recognising that patients with breast cancer often follow various care paths. With the aid of metro-mapping, we will clearly depict the distinct care paths of patients with breast cancer, using different colours to connect and represent their care journeys.

    Patient and public involvement

    None.

    Ethics and dissemination

    Ethical approval is not needed as this scoping review does not involve collecting data from human participants. The results produced from this review will be submitted to a scientific peer-reviewed journal for publication and will be presented at scientific meetings.

    Discussion

    Breast cancer continues to be a major public health challenge, especially in LMICs like those in Africa.31 Early detection and treatment of breast cancer significantly reduce morbidity and mortality rates, greatly improving the chances of survival.32 33 A delay in the path of breast cancer care can lead to the cancer progressing to a more advanced stage, complicating treatment and potentially diminishing survival rates.34 Furthermore, such delays can impose a heavier financial burden on both patients and healthcare systems. Advanced breast cancer can also result in intensified symptoms, increased pain and physical limitations, significantly impairing a patient’s overall quality of life.35 In LMICs, a substantial number of women with breast cancer either initially present with or are later diagnosed with advanced-stage disease (locally advanced or metastatic).33 African countries are yet to establish universal coverage of a breast cancer screening programme, and they face significant accessibility and affordability barriers.36 Furthermore, continuity and coordination of care remain a significant challenge in the region. For individuals seeking medical attention, numerous challenges exist. Many in Africa lack awareness of breast cancer, its risk factors and the critical importance of early detection, leading to delayed care-seeking. Cultural and societal stigma, financial barriers, geographical distances to healthcare facilities, and low health literacy further hinder patients' understanding of the significance of early detection and timely treatment.37

    Conversely, care providers in the region confront their own set of challenges. Limited resources, encompassing healthcare facilities, trained personnel and diagnostic equipment, can obstruct their capacity to deliver timely and comprehensive care. A shortage of specialised cancer care centres is prevalent in many African countries, making it challenging for patients to access advanced treatments and expert care timely.38 39

    This scoping review has implications both at the system and care levels. At the system level, the review can provide valuable insights for healthcare policymakers regarding the current state of timeliness in various paths in breast cancer care in Africa. This information can serve as a foundation for the development of targeted policies and strategic plans aimed at enhancing the healthcare system’s capacity to deliver timely care. Besides, it can help to pinpoint where investments in healthcare infrastructure, personnel training and equipment are most urgently required to minimise delays.

    In terms of care implications, the review can play an important role in informing the development or refinement of clinical guidelines for breast cancer care in Africa. This ensures that these guidelines place a significant emphasis on the crucial aspect of timeliness in screening, diagnosis and treatment, thereby promoting more effective and timely care for patients with breast cancer across the continent.

    Most studies on patient care paths are either conducted in developed countries or led by researchers from developed countries. This can lead to value or context bias, even though developing countries bear most of the cancer burden. This bias may arise because healthcare systems, patient experiences and resource availability in developed countries can differ significantly from those in developing nations. As a result, findings from studies conducted primarily in developed countries may not fully reflect the unique challenges and contextual factors faced by patients and healthcare providers in resource-constrained settings. Therefore, this review will provide valuable information about the breast cancer path in the African context and highlight future research direction.

    Generally, the aim of this proposed scoping review is to combine information from both published peer-reviewed studies and grey literature regarding the metrics used to measure timeliness, pinpoint the specific time point along the care pathway where delays are more reported, and indicate the factors influencing the timeliness of breast cancer care in Africa.

    This review has certain limitations. First, it will not incorporate a quality assessment or grading of evidence. Second, the review will exclusively consider studies published in English, potentially excluding relevant literature in other languages. By excluding non-English studies, the review may overlook valuable research conducted in other languages.

    Ethics statements

    Patient consent for publication

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    Footnotes

    • Contributors AAK generated the idea, developed the research questions and study methods, conceptualised the review approach and developed the manuscript. CL, HJ and HY contributed to developing the research questions, the review and editing of the manuscript. AAK is the guarantor.

    • Funding This review protocol is funded by a La Trobe University Research Graduate Scholarship (LTURGS).

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

    • Provenance and peer review Not commissioned; externally peer reviewed.