Hostname: page-component-586b7cd67f-rcrh6 Total loading time: 0 Render date: 2024-11-22T01:57:30.112Z Has data issue: false hasContentIssue false
  • English
  • Français

Exploring the contribution of cancer palliative care development toward alleviating the human crisis of suffering in low- and middle-income countries: A framework synthesis protocol

Published online by Cambridge University Press:  27 September 2024

Shrikant Atreya ,
Arathi Rao Open the ORCID record for Arathi Rao [Opens in a new window] ,
Vijay Shree Dhyani Open the ORCID record for Vijay Shree Dhyani [Opens in a new window] ,
Mebin Mathew ,
Roop Gursahani ,
Srinagesh Simha ,
Nancy Preston ,
Catherine Walshe  and
Naveen Salins
Shrikant Atreya
Affiliation:
Department of Palliative Medicine and Psycho-oncology, Tata Medical Centre, Kolkata, India
Arathi Rao*
Affiliation:
Department of Global Public Health Policy and Governance, Manipal Academy of Higher Education, Manipal, KA, India
Vijay Shree Dhyani
Affiliation:
Kasturba Medical College, Manipal, KA, India
Mebin Mathew
Affiliation:
Karunashraya Bangalore Hospice Trust, Bangalore, India
Roop Gursahani
Affiliation:
Department of Neurology, PD Hinduja Hospital, Mumbai, Mumbai, India
Srinagesh Simha
Affiliation:
Karunashraya Bangalore Hospice Trust, Bangalore, India
Nancy Preston
Affiliation:
Department of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal, Manipal Academy of Higher Education, Manipal, KA, India
Catherine Walshe
Affiliation:
Department of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal, Manipal Academy of Higher Education, Manipal, KA, India
Naveen Salins
Affiliation:
Division of Health Research, Health Innovation One, Sir John Fisher Drive, Lancaster University, Lancaster, UK
*
Corresponding author: Arathi Rao; Email: [email protected]
Rights & Permissions [Opens in a new window]

Abstract

Objectives

Inadequate access to cancer care, high mortality, and out-of-pocket expenditure contribute to health-related suffering in low- and middle-income countries, making palliative care a relevant option. How palliative care development has alleviated suffering is not systematically studied, necessitating this review’s conduct. The objective of this systematic review with a framework synthesis approach is to identify and map the dimensions and indicators of cancer palliative care development and the components of integration between cancer and palliative care in LMICs.

Methods

Uni- and multi-disciplinary databases like Cochrane, MEDLINE (PubMed), EMBASE, CINAHL Complete, and PsycINFO will be systematically searched for eligible studies exploring cancer palliative care development in LMICs and their contribution to alleviating health-related suffering in the cancer context. Our selection process will encompass countries classified by the World Bank as low-income (26 countries), lower-income (54 countries), and upper-middle-income (54 countries).

Results

Review findings will be synthesised and analysed using a best-fit framework synthesis method using 2 frameworks (the WHO model of components and indicators for palliative care development and integration elements between oncology and palliative care), and the findings will be developed as themes and subthemes, and patterns interpreted using these 2 models.

Significance of results

This review will analyse the development of cancer palliative care in LMICs. It will identify gaps in provision, solutions derived at the regional level to address them, and best practices and failed models with reasons underpinning them.

Keywords

Cancerpalliative caredevelopment indicatorsintegrationlow- and middle-income countries
Type
Review Article
Information
Palliative & Supportive Care , First View , pp. 1 - 7
Check for updates
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2024. Published by Cambridge University Press.

Introduction

Cancer, with an estimated annual incidence of 19.3 million, is one of the leading causes of death worldwide (Sung et al. Reference Sung, Ferlay and Siegel2021). Up to three-fourths of 10 million cancer-related deaths yearly are in low- and middle-income countries (LMICs) (Sung et al. Reference Sung, Ferlay and Siegel2021). The cancer incidence is projected to double by 2070 with more than 400% predicted increase in low-income and 168% increase in middle-income countries (Soerjomataram and Bray Reference Soerjomataram and Bray2021). The surge in cancer incidence is attributable to population expansion, increasing life expectancy, growing urbanization, and lifestyle changes (Pramesh et al. Reference Pramesh, Badwe and Borthakur2014). Among the specific cancer types, colorectal, breast, lung, and prostate cancers will have the largest increase by 2070 (Soerjomataram and Bray Reference Soerjomataram and Bray2021).

While high-resource countries have a greater incidence of cancer, the mortality rates remain higher in LMICs (Shah et al. Reference Shah, Kayamba and Peek2019). Moreover, cancer-related mortality rates in high-resource countries are plateauing or decreasing (Shah et al. Reference Shah, Kayamba and Peek2019) due to strategies like focused awareness, screening and surveillance leading to early detection, and better access to cancer therapies (Foreman et al. Reference Foreman, Marquez and Dolgert2018; Kocarnik et al. Reference Kocarnik, Compton and Dean2022). Conversely, LMICs are experiencing a rise in obesity and sedentary lifestyles, excessive tobacco and alcohol use, and infections contributing to carcinogenesis (Arbyn et al. Reference Arbyn, Weiderpass and Bruni2020; Kocarnik et al. Reference Kocarnik, Compton and Dean2022; Nambiar et al. Reference Nambiar, Rana and Rajagopal2021; Pramesh et al. Reference Pramesh, Badwe and Borthakur2014). Moreover, late presentation, high out-of-pocket expenditure, (Arbyn et al. Reference Arbyn, Weiderpass and Bruni2020; Nambiar et al. Reference Nambiar, Rana and Rajagopal2021; Pramesh et al. Reference Pramesh, Badwe and Borthakur2014) and inadequate access to cancer surgeries and chemoradiotherapy (Abdel-Wahab et al. Reference Abdel-Wahab, Fidarova and Polo2017; Farmer et al. Reference Farmer, Frenk and Knaul2010; Meara et al. Reference Meara, Leather and Hagander2015; Sullivan et al. Reference Sullivan, Alatise and Anderson2015; Vanderpuye et al. Reference Vanderpuye, Grover and Hammad2017; Wirtz et al. Reference Wirtz, Hogerzeil and Gray2017) diminish cancer care in LMICs. Therefore, palliative care remains a relevant option for patients with cancer in LMICs (Cabanes et al. Reference Cabanes, Taylor and Malburg2022; Campling et al. Reference Campling, Birtwistle and Richardson2022; Lucey et al. Reference Lucey, McQuillan and MacCallion2008; Rosenberg et al. Reference Rosenberg, Brenner and Shalev2022).

In high-resource countries, palliative care for people with cancer is often implemented as a cost-effective intervention (May et al. Reference May, Normand and Cassel2018; Obermeyer et al. Reference Obermeyer, Makar and Abujaber2014). There is evidence to support its implementation in LMICs where it reduces healthcare utilization (Devi et al. Reference Devi, Tang and Corbex2008; Ratcliff et al. Reference Ratcliff, Thyle and Duomai2017; Reid et al. Reference Reid, Kovalerchik and Jubanyik2019; Yeager et al. Reference Yeager, LaVigne and Rajvanshi2016) and costs (Desrosiers et al. Reference Desrosiers, Cupido and Pitout2014; Mosoiu et al. Reference Mosoiu, Dumitrescu and Connor2014; Reid et al. Reference Reid, Kovalerchik and Jubanyik2019), and improves patient and family reported outcomes and satisfaction (Hongoro and Dinat Reference Hongoro and Dinat2011; Yeager et al. Reference Yeager, LaVigne and Rajvanshi2016). It is estimated that 40 million people need palliative care globally every year (World Health Organization 2018). However, due to the lack of palliative care registries, it is seldom possible to know how many patients receive care, but it is evident that many do not have access to it (Connor et al. Reference Connor, Centeno and Garralda2021). Moreover, in LMICs, healthcare disparities and inequities are exacerbated by social factors (World Health Organization 2023) like lack of finances, inadequate healthcare infrastructure and trained workforce, environmental barriers, and cultural beliefs and practices hindering the delivery of palliative care (Abu-Odah et al. Reference Abu-Odah, Molassiotis and Liu2020; Donkin et al. Reference Donkin, Goldblatt and Allen2018; Donkor et al. Reference Donkor, Luckett and Aranda2018; Fadhil et al. Reference Fadhil, Lyons and Payne2017; Hannon et al. Reference Hannon, Zimmermann and Knaul2016; Ly et al. Reference Ly, Pascoe and Philip2023).

A search was conducted on the multidisciplinary database SCOPUS (Burnham Reference Burnham2006) to understand the current status of palliative care developments in LMICs. The search identified systematic reviews that discussed facilitators and barriers in palliative care provision (Abu-Odah et al. Reference Abu-Odah, Molassiotis and Liu2020; Donkor et al. Reference Donkor, Luckett and Aranda2018), availability and gaps in paediatric palliative care (Caruso Brown et al. Reference Caruso Brown, Howard and Baker2014), end-of-life care education (Atreya et al. Reference Atreya, Datta and Salins2022), palliative care interventions and outcomes (Potts et al. Reference Potts, Cartmell and Nemeth2018; Singh and Harding Reference Singh and Harding2015), and community-based palliative care models and outcomes (Vernon et al. Reference Vernon, Hughes and Kowalczyk2022). The review findings showed that integrating patient preferences and local cultural needs into primary care and having community engagement, financial support, political commitment, and an ongoing supportive learning environment for all healthcare providers were crucial for cost-effective palliative care programs. However, the reviews did not comprehensively report the implications of these findings on dimensions and indicators of palliative care development such as such as quality of service, capacity building, integration of palliative care into primary care, the policy framework for palliative care implementation, standardization of guidelines and treatment protocols, access to essential medications including opioids, or the extent of palliative care service delivery, education, and research. Learnings from knowing the regional differences in policy and service implementation, progress made in these settings, and the country-level strategies employed might facilitate developing a model that impacts palliative care delivery in other LMICs.

In this systematic review, we use a framework synthesis approach to identify and map the dimensions and indicators of cancer palliative care development and the components of integration between cancer and palliative care in LMICs. We will also be exploring the contribution of palliative care toward alleviating human suffering in the context of cancer (World Health Organization 2021).

Methods

The protocol for this review was developed using framework synthesis approach to meet the objectives of this review (Brunton et al. Reference Brunton, Oliver and Thomas2020; Ritchie et al. Reference Ritchie, Lewis and Lewis2013). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) provided in (Supplementary File 1) (Shamseer et al. Reference Shamseer, Moher and Clarke2015). The protocol will be registered with PROSPERO.

Review question

What is known about how palliative care development in LMICs contributes to alleviating human suffering for people with cancer?

Review objectives

  • • To identify and map the evidence relating to dimensions and indicators of cancer palliative care development in LMICs.

  • • To identify the components of cancer and palliative care integration.

  • • To explore the interplay of underlying generative mechanisms driving or hindering cancer palliative care development in LMICs.

  • • To understand the contribution of cancer palliative care development in addressing the human crises of suffering.

Search strategy

Databases such as Cochrane database, MEDLINE (PubMed), EMBASE, CINAHL Complete, Cochrane library, and PsycINFO will be searched to identify articles published in English between 01 January 1990 and 30 December 2023. Additionally, searches will be conducted using SCOPUS (Elsevier), the Web of Science (Clarivate) using free texts. The bibliography of included studies will be searched to identify additional relevant studies.

An initial search of MEDLINE (via PubMed) will be conducted to develop the search strategy and later will be translated for other databases. The preliminary search will be conducted using the combination of the following keywords: cancer, tumour, malignancy, palliative care, end-of-life care, development indicators, LMICs (LMICs), and low-income countries (LICs) using the specific controlled vocabulary and keywords listed in Supplementary File 2 with appropriate field tags (title, abstract, all fields, keywords, text words) (Bramer et al. Reference Bramer, de Jonge and Rethlefsen2018). Further refinement and customization of the search strategy for other databases will be carried out based on the results of the preliminary PubMed search strategy (Supplementary File 3).

To augment our review, we will examine the bibliographies of the included full-text articles and carry out citation searches via Google Scholar to unearth more relevant articles (Eyers Reference Eyers1998). We will verify the citations of the included publications until no further pertinent papers are identified (Hinde and Spackman Reference Hinde and Spackman2015). We will not constrain the search by any specific date or database-specific filters.

Eligibility screening

This review will consider quantitative and qualitative studies to explore cancer palliative care development in LMIC and LIC comprehensively. Our selection process will encompass countries classified by the World Bank as low-income (26 countries), lower-income (54 countries), and upper-middle-income (54 countries) (The World Bank Country and Lending Groups 2024). While we will not exclude literature based on quality or study type, we will thoughtfully evaluate each factor when analyzing evidence. Due to restrictions in time and language translation resources, we will only incorporate research published in English. The review eligibility criteria are provided in Table 1.

Table 1. Review eligibility criteria

After database search, the citations from will be imported to Rayyan for deduplication and screening. Once the duplicates are removed, 2 independent reviewers (SA and MM) will review the titles and abstracts of the citations against the predefined eligibility criteria set provided in Table 1.

Relevant citations will be obtained in full text after the title and abstract screening stage. Any disagreements between the reviewers at each stage of the selection process will be discussed between the reviewers, and the third reviewer (NS) will be consulted if necessary. A PRISMA flow chart 2020 (Page et al. Reference Page, McKenzie and Bossuyt2021) will be presented to show the database search and screening results and the reasons for exclusions during the full-text screening stage.

Indexing and charting

Data extraction

We will create and test a data extraction form to ensure it aligns with our review objectives and captures the required information. If necessary, changes to the form will be made during the pilot extraction process before the final data extraction. We will also try to contact the authors of the primary studies to obtain any crucial missing data. A preliminary data extraction form is included in Supplementary File 4.

The data collection form will encompass specific data items on

  1. A. Study characteristics: authors, year of publication, aims and objectives, country, and setting.

  2. B. Methodological attributes: study design, sampling, sample, population and eligibility criteria, timeframe, tools used, data analysis methods

  3. C. Findings: Besides analyzing population demographics and cancer types, we will extract data on two frameworks utilized in this synthesis: the World Health Organisation’s conceptual model for palliative care development (World Health Organization 2021) and Integrated palliative care-oncology practice (Kaasa et al. Reference Kaasa, Loge and Aapro2018). We will also gather specific information on outcomes related to the alleviation of suffering through palliative care development, including models of care, service delivery, access, programs, capacity, policies, standards, medication availability, education, research, barriers, facilitators, patient outcomes, limitations, conclusions, and funding.

The development of cancer palliative care services encompasses providing infrastructure to support outpatient, inpatient, home-based, and tele-palliative care (World Health Organization 2021). Additionally, it involves the availability of a trained workforce, including primary care physicians trained in primary palliative care and multidisciplinary specialized palliative care teams comprised of physicians, nurses, social workers, spiritual healers, and paramedics (World Health Organization 2021).

Integrated cancer palliative care involves integrating palliative care into a multidisciplinary oncology team, creating clinical care pathways, initiating symptom management simultaneously with cancer care, promoting collaborative care between the oncology and palliative care teams, and involving patients in goals of care discussion and advance care planning (Kaasa et al. Reference Kaasa, Loge and Aapro2018).

Medication availability encompasses access to essential medicines across all health systems, with particular emphasis on the use of opioids for the management of pain and other symptoms (World Health Organization 2021). It includes the WHO list of essential medicines like non-opioids, opioid analgesics, and other drugs for symptom management (World Health Organization 2021).

Policy support refers to policies related to palliative care and standardized operating guidelines for providing such care (World Health Organization 2021). It includes regulatory documents that outline the procurement, dispensation, distribution, and administration of opioids in the context of palliative care (World Health Organization 2021). Additionally, it encompasses national health plans that incorporate palliative care as a routine clinical service and funding sources to facilitate the development of palliative care services (World Health Organization 2021).

We will extract findings on palliative care education and research, encompassing the availability of educators and education programs for both generalist and specialist providers and integrating palliative care training in undergraduate and postgraduate curricula (World Health Organization 2021). Additionally, we will gather data on palliative care research, study collaborations, and funding opportunities (World Health Organization 2021).

Mapping and interpretation

Quality appraisal

The quality appraisal will be conducted using Hawker’s tool for all study designs (Hawker et al. Reference Hawker, Payne and Kerr2002). Studies will not be excluded based on their scores but will be considered when incorporating them into the synthesis.

Data synthesis

Our review methodology will use the best-fit approach (Carroll et al. Reference Carroll, Booth and Cooper2011), differentiating it from other framework synthesis methods (Carroll et al. Reference Carroll, Booth and Leaviss2013). We selected the 2 most appropriate frameworks for our review (Carroll et al. Reference Carroll, Booth and Cooper2011, Reference Carroll, Booth and Leaviss2013). These frameworks include the WHO model of components and indicators for palliative care development (World Health Organization 2021) and integration elements between oncology and palliative care (Kaasa et al. Reference Kaasa, Loge and Aapro2018). Using framework synthesis, we will effectively organize our review findings under a priori themes and synthesize the findings considering the regional variations based on low income countries, LMICs and upper middle-income countries. The review findings will be described narratively using descriptive statistics.

This review will utilize the WHO’s conceptual model for palliative care development (World Health Organization 2021) as the first framework. The rationale for integrating palliative care into a country’s healthcare system is its ability to alleviate health-related severe suffering (Arias-Casais et al. Reference Arias-Casais, Garralda and Sánchez-Cárdenas2021). The WHO’s model comprises 6 dimensions: integrated palliative care services, health policies, essential medicine usage, education and training, empowerment of individuals and communities, and research (World Health Organization 2021). Additionally, it includes a set of 18 indicators deemed essential to the development of palliative care (World Health Organization 2021). By comparing the data from this review to the model, we can assess the progress in palliative care development and identify gaps and challenges in its provision in LMICs. Furthermore, we will identify aspects of palliative care development outside the WHO framework, which may necessitate future policy changes, amendments in palliative care provision, and resource allocation.

The second framework will include the integrated palliative care-oncology practice model, which encompasses both clinical structural and clinical process domains (Kaasa et al. Reference Kaasa, Loge and Aapro2018). There is widespread agreement that integrating palliative care into the multidisciplinary oncology team can significantly improve the quality of life for patients and their families while easing the transition through oncological treatment (Kaasa et al. Reference Kaasa, Loge and Aapro2018). This framework provides a valuable tool for evaluating the level and extent of palliative care integration at both the hospital and community levels and for assessing the degree to which palliative care is incorporated into routine clinical care (Kaasa et al. Reference Kaasa, Loge and Aapro2018). It includes early referrals with clearly defined clinical pathways for integration, routine symptom screening, collaborative care, participation in tumor board meetings, and discussions surrounding prognostication and advance care planning with clear goals of care (Kaasa et al. Reference Kaasa, Loge and Aapro2018). As we analyze the literature, we will draw on data related to physical symptom distress, psychosocial and spiritual concerns, quality of life, and end-of-life care to expand upon this framework. Additionally, it will enable us to identify factors that may facilitate or impede the integration of palliative care.

Themes, subthemes, and patterns generated from the data during the analysis will be interpreted using the WHO’s conceptual model for palliative care development (World Health Organization 2021) and the integrated palliative care-oncology practice model (Kaasa et al. Reference Kaasa, Loge and Aapro2018). Any new knowledge generated from the literature will serve as a modification to these frameworks (Barnett-Page and Thomas Reference Barnett-Page and Thomas2009).

Quality assurance of the review

A priori protocol is developed to remove any ambiguity and bias. Multiple databases will be searched to identify the most relevant literature about the review question. Two authors will independently be involved in screening, data extraction and assessing the quality of the papers, resolving any disagreements or queries through discussion (Brunton et al. Reference Brunton, Oliver and Thomas2020). Two reviewers (NS and SA) will perform coding and synthesize according to the 2 selected frameworks and randomly cross-check 10% of allotted studies (Kaasa et al. Reference Kaasa, Loge and Aapro2018; World Health Organization 2021). Both reviewers will then interpret the relationships through an iterative process until consensus. The reporting of this systematic review with framework synthesis will be done using enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) (Tong et al. Reference Tong, Flemming and McInnes2012).

Discussion

There is a steady rise in the burden of chronic, life-threatening illnesses in LMICs Field (Abu-Odah et al. Reference Abu-Odah, Molassiotis and Liu2020; Camp (Abu-Odah et al. Reference Abu-Odah, Molassiotis and Liu2020; Campling et al. Reference Campling, Birtwistle and Richardson2022; Donkor et al. Reference Donkor, Luckett and Aranda2018; Singh and Harding Reference Singh and Harding2015). Additionally, there needs to be more evidence in this setting on palliative care intervention models, their outcomes, and how they inform policies. Initiating and sustaining palliative care is a significant challenge due to various factors like personal and professional disposition, healthcare system-related challenges, insufficient knowledge about palliative care among healthcare professionals and the lack of public awareness about its benefits (Abu-Odah et al. Reference Abu-Odah, Molassiotis and Liu2020; Atreya et al. Reference Atreya, Datta and Salins2022; Campling et al. Reference Campling, Birtwistle and Richardson2022; Donkor et al. Reference Donkor, Luckett and Aranda2018; Downing et al. Reference Downing, Boucher and Daniels2018; Laabar et al. Reference Laabar, Saunders and Auret2021; Lane et al. Reference Lane, Ramadurai and Simonetti2019; Namisango et al. Reference Namisango, Ramsey and Dandadzi2021; Singh and Harding Reference Singh and Harding2015).

LMICs are disadvantaged by a lack of specialized palliative care services, limited access to essential medications for symptom control, funding limitations, and other challenges (Gautam and Adhikari Reference Gautam and Adhikari2021; Kamal et al. Reference Kamal, Maguire and Meier2015; Kebudi et al. Reference Kebudi, Cakir and Silbermann2021; Kenneson et al. Reference Kenneson, Hughes-Visentin and Wrigley2023; Namisango et al. Reference Namisango, Ramsey and Dandadzi2021). While opioids are recognized as a crucial aspect of palliative care (Clark et al. Reference Clark, Salins and Daniel2023; Csete et al. Reference Csete, Kamarulzaman and Kazatchkine2016), access to these medications is often limited in these regions due to cultural barriers (Berterame et al. Reference Berterame, Erthal and Thomas2016; Clark et al. Reference Clark, Salins and Daniel2023; Cleary et al. Reference Cleary, Simha and Panieri2013; Jayawardana et al. Reference Jayawardana, Forman and Johnston-Webber2021; Vranken et al. Reference Vranken, Linge-Dahl and Mantel-Teeuwisse2020), insufficient training and awareness among healthcare professionals (Berterame et al. Reference Berterame, Erthal and Thomas2016; Clark et al. Reference Clark, Salins and Daniel2023; Cleary et al. Reference Cleary, Simha and Panieri2013; Jayawardana et al. Reference Jayawardana, Forman and Johnston-Webber2021; Vranken et al. Reference Vranken, Linge-Dahl and Mantel-Teeuwisse2020), and concerns regarding dependence and diversion (Clark et al. Reference Clark, Salins and Daniel2023; Csete et al. Reference Csete, Kamarulzaman and Kazatchkine2016).

Currently, limited information is available regarding the effectiveness of regional palliative care models on a national level and their impact on neighboring regions (Dongre et al. Reference Dongre, Rajendran and Kumar2012; Harding et al. Reference Harding, Selman and Agupio2010, Reference Harding, Selman and Powell2013; Kumar Reference Kumar2007; Palumbo et al. Reference Palumbo, Tilly and Namisango2023; Potts et al. Reference Potts, Cartmell and Nemeth2018; Selman et al. Reference Selman, Harding and Gysels2011; Thayyil and Cherumanalil Reference Thayyil and Cherumanalil2012; Xu et al. Reference Xu, Su and Deboer2019). Additionally, social determinants of health, including social security, financial limitations, malnutrition, and access to basic services, notably affect healthcare-seeking behaviors and, consequently, access to palliative care (Dressel et al. Reference Dressel, Mkandawire and Gondwe2020; Mkandawire-Valhmu et al. Reference Mkandawire-Valhmu, Kendall and Dressel2020).

This review will gather and synthesize empirical data on the development of cancer palliative care in LMICs. The findings will provide evidence on how the current palliative care provision addresses health-related suffering resulting from the human crisis of cancer. It will address the gaps in provision, solutions derived at the regional level to address it, and the best practices and failed models with reasons underpinning them.

Supplementary material

The supplementary material for this article can be found at https://doi.org/10.1017/S1478951524001214.

Acknowledgments

This systematic review with framework synthesis is part of the Lancet Commission on the Human Crisis of Cancer. The authors thank the Manipal Academy of Higher Education (MAHE), Manipal, for institutional and infrastructural support and the ELICIT task force for financial support.

Author contributions

Shrikant Atreya: Conceptualization, Methodology, Writing – original draft, Writing – review & editing. Arathi Rao: Conceptualization, Writing – review & editing. Vijay Shree Dhyani: Conceptualization, Methodology, Writing – original draft, Writing – review & editing. Mebin Mathew: Methodology, Writing – review & editing. Roop Gursahani: Methodology, Writing – review & editing. Srinagesh Simha: Methodology, Writing – review & editing. Nancy Preston: Methodology, Writing – review & editing. Catherine Walshe: Methodology, Writing – review & editing. Naveen Salins: Conceptualization, Methodology, Supervision, Writing – original draft, Writing – review & editing, funding acquisition.

Funding

The conduct of this review is supported through the unrestricted grant by ELICIT. The ELICIT task force on end-of-life care in India supports end-of-life education, research and policy.

Competing interests

The authors declare no competing interests. ELICIT funded the salary of one research associate (MM).

References

Abdel-Wahab, M, Fidarova, E and Polo, A (2017) Global access to radiotherapy in low- and middle-income countries. Clinical Oncology (Royal College of Radiologists (Great Britain)) 29(2), 99–104. doi:10.1016/j.clon.2016.12.004CrossRefGoogle ScholarPubMed
Abu-Odah, H, Molassiotis, A and Liu, J (2020) Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: A systematic review of reviews. BMC Palliative Care 19(1), . doi:10.1186/s12904-020-00558-5CrossRefGoogle ScholarPubMed
Arbyn, M, Weiderpass, E, Bruni, L, et al. (2020) Estimates of incidence and mortality of cervical cancer in 2018: A worldwide analysis. The Lancet Global Health 8(2), e191–e203. doi:10.1016/S2214-109X(19)30482-6CrossRefGoogle ScholarPubMed
Arias-Casais, N, Garralda, E, Sánchez-Cárdenas, MA, et al. (2021) Evaluating the integration of palliative care in national health systems: An indicator rating process with EAPC task force members to measure advanced palliative care development. BMC Palliative Care 20(1), . doi:10.1186/s12904-021-00728-zCrossRefGoogle ScholarPubMed
Atreya, S, Datta, SS and Salins, N (2022) Views of general practitioners on end-of-life care learning preferences: A systematic review. BMC Palliative Care 21(1), . doi:10.1186/s12904-022-01053-9CrossRefGoogle ScholarPubMed
Barnett-Page, E and Thomas, J (2009) Methods for the synthesis of qualitative research: A critical review. BMC Medical Research Methodology 9, . doi:10.1186/1471-2288-9-59CrossRefGoogle ScholarPubMed
Berterame, S, Erthal, J, Thomas, J, et al. (2016) Use of and barriers to access to opioid analgesics: A worldwide, regional, and national study. Lancet (London, England) 387(10028), 1644–1656. doi:10.1016/S0140-6736(16)00161-6CrossRefGoogle ScholarPubMed
Bramer, WM, de Jonge, GB, Rethlefsen, ML, et al. (2018) A systematic approach to searching: An efficient and complete method to develop literature searches. Journal of the Medical Library Association: JMLA 106(4), 531–541. doi:10.5195/jmla.2018.283CrossRefGoogle ScholarPubMed
Brunton, G, Oliver, S and Thomas, J (2020) Innovations in framework synthesis as a systematic review method. Research Synthesis Methods 11(3), 316–330. doi:10.1002/jrsm.1399CrossRefGoogle ScholarPubMed
Burnham, JF (2006) Scopus database: A review. Biomedical Digital Libraries 3, . doi:10.1186/1742-5581-3-1CrossRefGoogle ScholarPubMed
Cabanes, A, Taylor, C, Malburg, C, et al. (2022) Supportive care interventions for cancer patients in low- and middle-income countries (LMICs): A scoping review. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer 30(11), 9483–9496. doi:10.1007/s00520-022-07319-5CrossRefGoogle ScholarPubMed
Campling, N, Birtwistle, J, Richardson, A, et al. (2022) Access to palliative care medicines in the community: An evaluation of practice and costs using case studies of service models in England. International Journal of Nursing Studies 132, . doi:10.1016/j.ijnurstu.2022.104275CrossRefGoogle ScholarPubMed
Carroll, C, Booth, A and Cooper, K (2011) A worked example of “best fit” framework synthesis: A systematic review of views concerning the taking of some potential chemopreventive agents. BMC Medical Research Methodology 11, . doi:10.1186/1471-2288-11-29CrossRefGoogle ScholarPubMed
Carroll, C, Booth, A, Leaviss, J, et al. (2013) “Best fit” framework synthesis: Refining the method. BMC Medical Research Methodology 13, . doi:10.1186/1471-2288-13-37CrossRefGoogle ScholarPubMed
Caruso Brown, AE, Howard, SC, Baker, JN, et al. (2014) Reported availability and gaps of pediatric palliative care in low- and middle-income countries: A systematic review of published data. Journal of Palliative Medicine 17(12), 1369–1383. doi:10.1089/jpm.2014.0095CrossRefGoogle ScholarPubMed
Clark, J, Salins, N, Daniel, S, et al. (2023) Views and experiences of opioid access amongst palliative care providers and public representatives in a low-resource setting: A qualitative interview study. PLOS Global Public Health 3(9), . doi:10.1371/journal.pgph.0002401CrossRefGoogle Scholar
Cleary, J, Simha, N, Panieri, A, et al. (2013) Formulary availability and regulatory barriers to accessibility of opioids for cancer pain in India: A report from the Global Opioid Policy Initiative (GOPI). Annals of Oncology: Official Journal of the European Society for Medical Oncology 24(Suppl 11), xi33–40. doi:10.1093/annonc/mdt501CrossRefGoogle ScholarPubMed
Connor, SR, Centeno, C, Garralda, E, et al. (2021) Estimating the number of patients receiving specialized palliative care globally in 2017. Journal of Pain and Symptom Management 61(4), 812–816. doi:10.1016/j.jpainsymman.2020.09.036CrossRefGoogle ScholarPubMed
Csete, J, Kamarulzaman, A, Kazatchkine, M, et al. (2016) Public health and international drug policy. Lancet (London, England) 387(10026), 1427–1480. doi:10.1016/S0140-6736(16)00619-XCrossRefGoogle ScholarPubMed
Desrosiers, T, Cupido, C, Pitout, E, et al. (2014) A hospital-based palliative care service for patients with advanced organ failure in sub-Saharan Africa reduces admissions and increases home death rates. Journal of Pain and Symptom Management 47(4), 786–792. doi:10.1016/j.jpainsymman.2013.05.021CrossRefGoogle ScholarPubMed
Devi, BCR, Tang, TS and Corbex, M (2008) Setting up home-based palliative care in countries with limited resources: A model from Sarawak, Malaysia. Annals of Oncology: Official Journal of the European Society for Medical Oncology 19(12), 2061–2066. doi:10.1093/annonc/mdn422CrossRefGoogle Scholar
Dongre, AR, Rajendran, KP, Kumar, S, et al. (2012) The effect of community-managed palliative care program on quality of life in the elderly in rural Tamil Nadu, India. Indian Journal of Palliative Care 18(3), 219–225. doi:10.4103/0973-1075.105694CrossRefGoogle ScholarPubMed
Donkin, A, Goldblatt, P, Allen, J, et al. (2018) Global action on the social determinants of health. BMJ Global Health 3(Suppl 1), . doi:10.1136/bmjgh-2017-000603CrossRefGoogle ScholarPubMed
Donkor, A, Luckett, T, Aranda, S, et al. (2018) Barriers and facilitators to implementation of cancer treatment and palliative care strategies in low- and middle-income countries: Systematic review. International Journal of Public Health 63(9), 1047–1057. doi:10.1007/s00038-018-1142-2CrossRefGoogle ScholarPubMed
Downing, J, Boucher, S, Daniels, A, et al. (2018) Paediatric palliative care in resource-poor countries. Children (Basel, Switzerland) 5(2), . doi:10.3390/children5020027Google ScholarPubMed
Dressel, A, Mkandawire, E, Gondwe, KW, et al. (2020) The intersection of food insecurity and health for rural Malawian women at the end of life. International Journal of Palliative Nursing 26(7), 372–382. doi:10.12968/ijpn.2020.26.7.372CrossRefGoogle ScholarPubMed
Eyers, JE (1998) Searching bibliographic databases effectively. Health Policy & Planning 13(3), 339–342. doi:10.1093/heapol/13.3.339CrossRefGoogle ScholarPubMed
Fadhil, I, Lyons, G and Payne, S (2017) Barriers and opportunities for palliative care development in the Eastern Mediterranean Region. The Lancet Oncology 18(3), e176–e184. doi:10.1016/S1470-2045(17)30101-8CrossRefGoogle ScholarPubMed
Farmer, P, Frenk, J, Knaul, FM, et al. (2010) Expansion of cancer care and control in countries of low and middle income: A call to action. Lancet (London, England) 376(9747), 1186–1193. doi:10.1016/S0140-6736(10)61152-XCrossRefGoogle ScholarPubMed
Foreman, KJ, Marquez, N, Dolgert, A, et al. (2018) Forecasting life expectancy, years of life lost, and all-cause and cause-specific mortality for 250 causes of death: Reference and alternative scenarios for 2016–40 for 195 countries and territories. Lancet (London, England) 392(10159), 2052–2090. doi:10.1016/S0140-6736(18)31694-5CrossRefGoogle ScholarPubMed
Gautam, D and Adhikari, S (2021) Palliative care services for cancer patients in Nepal, a lower-middle-income country. Palliative Care and Social Practice 15, . doi:10.1177/26323524211021105CrossRefGoogle Scholar
Hannon, B, Zimmermann, C, Knaul, FM, et al. (2016) Provision of palliative care in low- and middle-income countries: Overcoming obstacles for effective treatment delivery. Journal of Clinical Oncology 34(1), 62–68. doi:10.1200/JCO.2015.62.1615CrossRefGoogle ScholarPubMed
Harding, R, Selman, L, Agupio, G, et al. (2010) Validation of a core outcome measure for palliative care in Africa: The APCA African Palliative Outcome Scale. Health and Quality of Life Outcomes 8, . doi:10.1186/1477-7525-8-10CrossRefGoogle ScholarPubMed
Harding, R, Selman, L, Powell, RA, et al. (2013) Research into palliative care in sub-Saharan Africa. The Lancet Oncology 14(4), e183–188. doi:10.1016/S1470-2045(12)70396-0CrossRefGoogle ScholarPubMed
Hawker, S, Payne, S, Kerr, C, et al. (2002) Appraising the evidence: Reviewing disparate data systematically. Qualitative Health Research 12(9), 1284–1299. doi:10.1177/1049732302238251CrossRefGoogle ScholarPubMed
Hinde, S and Spackman, E (2015) Bidirectional citation searching to completion: An exploration of literature searching methods. PharmacoEconomics 33(1), 5–11. doi:10.1007/s40273-014-0205-3CrossRefGoogle ScholarPubMed
Hongoro, C and Dinat, N (2011) A cost analysis of a hospital-based palliative care outreach program: Implications for expanding public sector palliative care in South Africa. Journal of Pain and Symptom Management 41(6), 1015–1024. doi:10.1016/j.jpainsymman.2010.08.014CrossRefGoogle ScholarPubMed
Jayawardana, S, Forman, R, Johnston-Webber, C, et al. (2021) Global consumption of prescription opioid analgesics between 2009-2019: A country-level observational study. EClinicalMedicine 42, . doi:10.1016/j.eclinm.2021.101198CrossRefGoogle ScholarPubMed
Kaasa, S, Loge, JH, Aapro, M, et al. (2018) Integration of oncology and palliative care: A lancet oncology commission. The Lancet Oncology 19(11), e588–e653. doi:10.1016/S1470-2045(18)30415-7CrossRefGoogle ScholarPubMed
Kamal, AH, Maguire, JM and Meier, DE (2015) Evolving the palliative care workforce to provide responsive, serious illness care. Annals of Internal Medicine 163(8), 637–638. doi:10.7326/M15-0071CrossRefGoogle ScholarPubMed
Kebudi, R, Cakir, FB and Silbermann, M (2021) Palliative care in high and low resource countries. Current Pediatric Reviews 17(3), 220–224. doi:10.2174/1573396317666210405143649CrossRefGoogle ScholarPubMed
Kenneson, SA, Hughes-Visentin, A, Wrigley, J, et al. (2023) Pediatric palliative care program implementation in LMICs: A systematic review using SWOT analysis. Journal of Pain and Symptom Management 66(4), . doi:10.1016/j.jpainsymman.2023.06.032CrossRefGoogle ScholarPubMed
Kocarnik, JM, Compton, K, Dean, FE, et al. (2022) Cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life years for 29 cancer groups from 2010 to 2019. JAMA Oncology 8(3), 420–444. doi:10.1001/jamaoncol.2021.6987Google ScholarPubMed
Kumar, SK (2007) Kerala, India: A regional community-based palliative care model. Journal of Pain and Symptom Management 33(5), 623–627. doi:10.1016/j.jpainsymman.2007.02.005CrossRefGoogle ScholarPubMed
Laabar, TD, Saunders, C, Auret, K, et al. (2021) Palliative care needs among patients with advanced illnesses in Bhutan. BMC Palliative Care 20(1), . doi:10.1186/s12904-020-00697-9CrossRefGoogle ScholarPubMed
Lane, T, Ramadurai, D and Simonetti, J (2019) Public awareness and perceptions of palliative and comfort care. The American Journal of Medicine 132(2), 129–131. doi:10.1016/j.amjmed.2018.07.032CrossRefGoogle ScholarPubMed
Lucey, M, McQuillan, R, MacCallion, A, et al. (2008) Access to medications in the community by patients in a palliative setting. A systems analysis. Palliative Medicine 22(2), 185–189. doi:10.1177/0269216307085722CrossRefGoogle Scholar
Ly, L, Pascoe, A, Philip, J, et al. (2023) Social determinants of advanced chronic respiratory interventions: A scoping review. European Respiratory Review: An Official Journal of the European Respiratory Society 32(169), . doi:10.1183/16000617.0068-2023CrossRefGoogle ScholarPubMed
May, P, Normand, C, Cassel, JB, et al. (2018) Economics of palliative care for hospitalized adults with serious illness: A meta-analysis. JAMA Internal Medicine 178(6), 820–829. doi:10.1001/jamainternmed.2018.0750CrossRefGoogle ScholarPubMed
Meara, JG, Leather, AJM, Hagander, L, et al. (2015) Global Surgery 2030: Evidence and solutions for achieving health, welfare, and economic development. Lancet (London, England) 386(9993), 569–624. doi:10.1016/S0140-6736(15)60160-XCrossRefGoogle ScholarPubMed
Mkandawire-Valhmu, L, Kendall, N, Dressel, A, et al. (2020) Women’s work at end of life: The intersecting gendered vulnerabilities of patients and caregivers in rural Malawi. Global Public Health 15(7), 1062–1072. doi:10.1080/17441692.2020.1730930CrossRefGoogle ScholarPubMed
Mosoiu, D, Dumitrescu, M and Connor, SR (2014) Developing a costing framework for palliative care services. Journal of Pain and Symptom Management 48(4), 719–729. doi:10.1016/j.jpainsymman.2013.11.017CrossRefGoogle ScholarPubMed
Nambiar, AR, Rana, S and Rajagopal, MR (2021) Serious health-related suffering and palliative care in South Asian countries. Current Opinion in Supportive and Palliative Care 15(3), 169–173. doi:10.1097/SPC.0000000000000565CrossRefGoogle ScholarPubMed
Namisango, E, Ramsey, L, Dandadzi, A, et al. (2021) Data and information needs of policymakers for palliative cancer care: A multi-country qualitative study. BMC Medical Informatics and Decision Making 21(1), . doi:10.1186/s12911-021-01555-1CrossRefGoogle Scholar
Obermeyer, Z, Makar, M, Abujaber, S, et al. (2014) Association between the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer. JAMA 312(18), 1888–1896. doi:10.1001/jama.2014.14950CrossRefGoogle ScholarPubMed
Page, MJ, McKenzie, JE, Bossuyt, PM, et al. (2021) The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ (Clinical Research Ed.) 372, . doi:10.1136/bmj.n71Google ScholarPubMed
Palumbo, N, Tilly, A, Namisango, E, et al. (2023) Palliative care in Malawi: A scoping review. BMC Palliative Care 22(1), . doi:10.1186/s12904-023-01264-8CrossRefGoogle ScholarPubMed
Potts, M, Cartmell, KB, Nemeth, L, et al. (2018) A systematic review of palliative care intervention outcomes and outcome measures in low-resource countries. Journal of Pain and Symptom Management 55(5), . doi:10.1016/j.jpainsymman.2017.12.487CrossRefGoogle ScholarPubMed
Pramesh, CS, Badwe, RA, Borthakur, BB, et al. (2014) Delivery of affordable and equitable cancer care in India. The Lancet Oncology 15(6), e223–233. doi:10.1016/S1470-2045(14)70117-2CrossRefGoogle ScholarPubMed
Ratcliff, C, Thyle, A, Duomai, S, et al. (2017) Poverty reduction in India through palliative care: A pilot project. Indian Journal of Palliative Care 23(1), 41–45. doi:10.4103/0973-1075.197943CrossRefGoogle ScholarPubMed
Reid, EA, Kovalerchik, O, Jubanyik, K, et al. (2019) Is palliative care cost-effective in low-income and middle-income countries? A mixed-methods systematic review. BMJ Supportive & Palliative Care 9(2), 120–129. doi:10.1136/bmjspcare-2018-001499CrossRefGoogle ScholarPubMed
Ritchie, J, Lewis, J, Lewis, P, et al. (2013) Qualitative Research Practice: a Guide for Social Science Students and Researchers. SAGE.Google Scholar
Rosenberg, LB, Brenner, KO, Shalev, D, et al. (2022) To accompany, always: Psychological elements of palliative care for the dying patient. Journal of Palliative Medicine 25(4), 537–541. doi:10.1089/jpm.2021.0667Google ScholarPubMed
Selman, L, Harding, R, Gysels, M, et al. (2011) The measurement of spirituality in palliative care and the content of tools validated cross-culturally: A systematic review. Journal of Pain and Symptom Management 41(4), 728–753. doi:10.1016/j.jpainsymman.2010.06.023CrossRefGoogle ScholarPubMed
Shah, SC, Kayamba, V, Peek, RM, et al. (2019) Cancer control in low- and middle-income countries: Is it time to consider screening? Journal of Global Oncology 5, 1–8. doi:10.1200/JGO.18.00200CrossRefGoogle ScholarPubMed
Shamseer, L, Moher, D, Clarke, M, et al. (2015) Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: Elaboration and explanation. BMJ (Clinical Research Ed.) 350, . doi:10.1136/bmj.g7647Google ScholarPubMed
Singh, T and Harding, R (2015) Palliative care in South Asia: A systematic review of the evidence for care models, interventions, and outcomes. BMC Research Notes 8(1), . doi:10.1186/s13104-015-1102-3CrossRefGoogle ScholarPubMed
Soerjomataram, I and Bray, F (2021) Planning for tomorrow: Global cancer incidence and the role of prevention 2020-2070. Nature Reviews Clinical Oncology 18(10), 663–672. doi:https://doi.org/10.1038/s41571-021-00514-zCrossRefGoogle ScholarPubMed
Sullivan, R, Alatise, OI, Anderson, BO, et al. (2015) Global cancer surgery: Delivering safe, affordable, and timely cancer surgery. The Lancet Oncology 16(11), 1193–1224. doi:10.1016/S1470-2045(15)00223-5CrossRefGoogle ScholarPubMed
Sung, H, Ferlay, J, Siegel, RL, et al. (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), 209–249. doi:10.3322/caac.21660CrossRefGoogle ScholarPubMed
Thayyil, J and Cherumanalil, JM (2012) Assessment of status of patients receiving palliative home care and services provided in a rural area-Kerala, India. Indian Journal of Palliative Care 18(3), 213–218. doi:10.4103/0973-1075.105693CrossRefGoogle Scholar
Tong, A, Flemming, K, McInnes, E, et al. (2012) Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology 12, . doi:10.1186/1471-2288-12-181CrossRefGoogle ScholarPubMed
Vanderpuye, V, Grover, S, Hammad, N, et al. (2017) An update on the management of breast cancer in Africa. Infectious Agents and Cancer 12, . doi:10.1186/s13027-017-0124-yCrossRefGoogle ScholarPubMed
Vernon, E, Hughes, MC and Kowalczyk, M (2022) Measuring effectiveness in community-based palliative care programs: A systematic review. Social Science & Medicine 296, . doi:10.1016/j.socscimed.2022.114731CrossRefGoogle ScholarPubMed
Vranken, MJ, Linge-Dahl, L, Mantel-Teeuwisse, AK, et al. (2020) The perception of barriers concerning opioid medicines: A survey examining differences between policy makers, healthcare professionals and other stakeholders. Palliative Medicine 34(4), 493–503. doi:10.1177/0269216319894190CrossRefGoogle ScholarPubMed
Wirtz, VJ, Hogerzeil, HV, Gray, AL, et al. (2017) Essential medicines for universal health coverage. Lancet (London, England) 389(10067), 403–476. doi:10.1016/S0140-6736(16)31599-9CrossRefGoogle ScholarPubMed
World Bank Country and Lending Groups – World Bank Data Help Desk (2024) Country Classification. https://datahelpdesk.worldbank.org/knowledgebase/articles/906519-world-bank-country-and-lending-groups (accessed 4 February 2024).Google Scholar
World Health Organization (2018) Integrating palliative care and symptom relief into primary health care: A WHO guide for planners, implementers and managers, Geneva: World Health Organization. https://apps.who.int/iris/handle/10665/274559 (accessed 3 March 2024).Google Scholar
World Health Organization (2021) Assessing the development of palliative care worldwide: A set of actionable indicators. https://apps.who.int/iris/bitstream/handle/10665/345532/9789240033351-eng.pdf (accessed 3 March 2024).Google Scholar
World Health Organization (2023) Integrating the Social Determinants of Health into Health Workforce Education and Training.Google Scholar
Xu, MJ, Su, D, Deboer, R, et al. (2019) Palliative oncologic care curricula for providers in resource-limited and underserved communities: A systematic review. Journal of Cancer Education: The Official Journal of the American Association for Cancer Education 34(2), 205–215. doi:10.1007/s13187-017-1310-8CrossRefGoogle ScholarPubMed
Yeager, A, LaVigne, AW, Rajvanshi, A, et al. (2016) CanSupport: A model for home-based palliative care delivery in India. Annals of Palliative Medicine 5(3), 166–171. doi:10.21037/apm.2016.05.04CrossRefGoogle Scholar
Figure 0

Table 1. Review eligibility criteria

Supplementary material: File

Atreya et al. supplementary material

Atreya et al. supplementary material
Download Atreya et al. supplementary material(File)
File 40.1 KB