Blog by Hilde M. Buiting, Ikenna D. Ebuenyi, Phyllis N. Butow and Gabe S. Sonke
Ninety-Two Participants from Twenty-Seven Countries in One Meeting
In November 2019, ninety-two healthcare professionals, patients and patient advocates from twenty-seven countries from all over the world attended a multidisciplinary workshop to discuss gaps in care and support for patients with metastatic breast cancer. The meeting was part of the American Society of Clinical Oncology (ASCO) annual conference, and Fallowfield et al. recently reported the outcomes in JCO Global Oncology.[1] Although ASCO provided a great opportunity to discuss this important topic with a large and diverse group of stakeholders, we argue that the input produced is too vague to address the needs of metastatic breast cancer patients around the world.
Patients with metastases face many challenges, in any country or care setting,[2] so it is to be expected that ASCO reported unmet supportive care needs around the world. The results of this meeting are no surprise. However, it is also well known that healthcare needs vary substantially according to disease severity as well as across (and within) low/middle-income (LMIC) and high-income countries (HIC).[3] We propose that “real-life” global oncology can develop further if, in such global discussions, organizations focus on similarities as well as differences across LMICs and HICs. We suggest that doctors and researchers start with experiences in actual medical practice and include perspectives from sociology/anthropology when providing guidance on how to care for and support this patient population.[4]
Treatment and Care Recommendations are Fragmented and Overly General
As Fallowfield et al. reported, the literature (including clinical studies) on advanced breast cancer (ABC) or metastatic breast cancer (MBC) does not always clearly specify which disease phase the patients are in. Fallowfield et al., however, do not discuss the nuances behind the disease phases or the different needs patients have across countries. For example, having MBC (stage IV disease) with a life expectancy of approximately one to three months is very different from having MBC for years while being in good physical condition. Furthermore, being diagnosed with MBC months to years after an initial diagnosis treated with curative intent has a different impact than being confronted with primary MBC that is, from the start, incurable (particularly for patients from LMICs).[5] Both a late diagnosis of MBC and a poor prognosis are more prevalent in patients from LMICs than in patients from HICs because lack of resources and facilities may already limit optimal care and a cure.[6]
Given the timeline of this one meeting, many aspects of actual medical practice cannot be represented in the recommendations. Yet important distinctions should be addressed, particularly how the needs of the MBC group with stage IV disease and not yet terminally ill (but treated and diagnosed differently across the world) differ from the needs of patients with curative disease or the needs of those who are terminally ill. This is important because appropriate communication needs to be differentiated by disease stage in order to contextualize key messages about the disease across countries. Apart from different care and treatment options across countries, nuances regarding culturally appropriate communication can be important too and should appear in guidance on MBC treatment and care.[7] From a health policy perspective, it would thus be worthwhile to make conclusions less abstract and more approachable for every single country. This approach would facilitate implementation.
Organization of Care Recommendations are Fragmented and Overly General
The results of ASCO’s multidisciplinary meeting also reveal that organization of care for MBC patients is frequently suboptimal. This is not surprising either. Organization of care substantially differs across countries and therefore warrants a more nuanced approach when representing a global perspective.[8] For example, cancer registry data show that organization of care in patients from HICs differs between hospitals.[9] However, patients from LMICs have different concerns and focus specifically on receiving treatment and care on time, especially patients with an MBC diagnosis.[10] Also, uncertainty about who will be the primary contact person (both as a healthcare professional and as a caretaker) during the disease is often irrelevant for patients from LMICs, whereas for patients from HICs (particularly for cancers that have already been studied extensively, such as MBC) this is a very important issue.[11] Patient experiences would add to these conclusions, as such illustrations can make discussions more vivid and concrete, which would facilitate the implementation of ideas.
In summary, although we welcome global oncology meetings as a means to integrate various country-specific perspectives on treatment and care, crucial differences, such as the stage of disease and patient resources, need to be considered to guarantee the success of this approach. Including an anthropological/sociological perspective would also add value to such large international meetings. This perspective could increase the chance of implementing the guidance produced and therefore ensure we have a “real” global oncology.
In a previous BMJ blogpost,>[12] we suggested including art as a perspective on healthcare. By suggesting this, we aim to bring the worlds of researchers, medical doctors and patients closer together, since the singular and qualitative nature of art models the singular and qualitative stories behind the many people diagnosed with a disease. Art as an approach to patient experiences helps to illustrate the large differences in oncology all over the world; it stresses the value of discussing disease globally, but at the same time acting locally as we learn from each other. These ideas are in line with a recent paper by Khan et al.,[13] which reports on the dangers of classifying countries as “rich” or “poor” because dichotomies create the sense of a hierarchy between people and nations. If we integrate research across low, middle, and high-income patients and nations, global oncology—in the context of treatment, care, and communication—will eventually become far more global.
References
[1] Leslie Fallowfield et al., “Gaps in Care and Support for Patients with Advanced Breast Cancer: A Report from the Advanced Breast Cancer Global Alliance,” JCO Global Oncology 7 (2021): 976-84.
[2] Hilde M. Buiting and Gabe S. Sonke, “People Behind Numbers, People Behind Their Disease: Using Art as an Additional Healthcare Perspective. BMJ Leader (blog), September 11, 2023, https://blogs.bmj.com/bmjleader/2023/09/11/people-behind-numbers-people-behind-their-disease-using-art-as-an-additional-healthcare-perspective-by-hilde-buiting-and-gabe-sonke/.
[3] Christina Fitzmaurice et al., “Global, Regional, and National Cancer Incidence, Mortality, Years of Life Lost, Years Lived With Disability, and Disability-Adjusted Life-Years for 29 Cancer Groups, 1990 to 2017: A Systematic Analysis for the Global Burden of Disease Study,” JAMA Oncology 5, no. 12 (2019): 1749-68. doi:10.1001/jamaoncol.2019.2996.
[4] Buiting and Sonke, “People Behind Numbers.”
[5] Fitzmaurice et al., “Global, Regional, and National Cancer Incidence.”
[6] Fitzmaurice et al., “Global, Regional, and National Cancer Incidence”; Constanza Pardo and Esther de Vries, “Breast and Cervical Cancer Survival at Instituto Nacional de Cancerología, Colombia,” Colombia Médica (Cali) 49, no. 1 (2018): 102-08. doi: 10.25100/cm.v49i1.2840.
[7] Peter A. Singer and Kerry W. Bowman, “Quality End-of-Life Care: A Global Perspective,” BMC Palliative Care 1, no. 1 (2002): 4. doi: 10.1186/1472-684X-1-4; Arunangshu Ghoshal et al., “To Tell or Not to Tell: Exploring the Preferences and Attitudes of Patients and Family Caregivers on Disclosure of a Cancer-Related Diagnosis and Prognosis,” Journal of Global Oncology 5 (2019): 1-12. doi: 10.1200/jgo.19.00132; Mahati Chittem, Paul Norman and Peter Harris, “Primary Family Caregivers’ Reasons for Disclosing Versus Not Disclosing a Cancer Diagnosis in India., Cancer Nursing 43, no. 2 (2020): 126-33. doi: 10.1097/ncc.0000000000000669; Mustafa Ozdogan et al., “‘Do Not Tell’: What Factors Affect Relatives’ Attitudes to Honest Disclosure of Diagnosis to Cancer Patients?” Support Care Cancer 12, no. 7 (2004): 497-502. doi: 10.1007/s00520-004-0633-2.
[8] Gerald W. Prager et al., “Global Cancer Control: Responding to the Growing Burden, Rising Costs and Inequalities in Access.” ESMO Open 3, no. 2 (2018): e000285. doi: 10.1136/esmoopen-2017-000285.
[9] Netherlands Comprehensive Cancer Organization (IKNL); accessed December 4, 2023. https://iknl.nl/nkr/uitleg-nkr-cijfers.
[10] Silvia de Sanjose and Vivian D. Tsu, “Prevention of Cervical and Breast Cancer Mortality in Low- and Middle-Income Countries: A Window of Opportunity. International Journal of Women’s Health 11 (2019): 381-86. doi: 10.2147/ijwh.S197115; James Cleary et al., “Supportive and Palliative Care for Metastatic Breast Cancer: Resource Allocations in Low- and Middle-Income Countries. A Breast Health Global Initiative 2013 Consensus Statement,” Breast 22, no. 5 (2013): 616-27. doi: 10.1016/j.breast.2013.07.052.
[11] Michelle A. Fortier et al., “Pain Buddy: A Novel Use of m-Health in the Management of Children’s Cancer Pain,” Computers in Biology and Medicine 76 (2016): 202-14. doi: 10.1016/j.compbiomed.2016.07.012
[12] Buiting and Sonke, “People Behind Numbers.”
[13] Themrise Khan et al., “How We Classify Countries and People—and Why It Matters,” BMJ Global Health 7 (2022): e009704. doi: 10.1136/bmjgh-2022-009704.
Hilde M. Buiting, PhD, Antoni van Leeuwenhoek/Netherlands Cancer Institute, Amsterdam, the Netherlands; University of Amsterdam, Amsterdam, the Netherlands; O2PZ, Platform of Palliative Care, Amsterdam, the Netherlands.
Ikenna D. Ebuenyi, MBBS, PhD, Department of Rehabilitation Science and Technology, University of Pittsburgh, USA.
Phyllis N. Butow, MPH, PhD, University of Sydney, School of Medical Psychology, Sydney, Australia.
Gabe S. Sonke, MD, PhD, Antoni van Leeuwenhoek/Netherlands Cancer Institute, Amsterdam, the Netherlands; University of Amsterdam, Amsterdam, the Netherlands.