You are special: The importance of identifying patients and their accompanying needs with metastatic breast cancer worldwide

Authors: Hilde M. Buiting, PhD (1,2,3,), Phyllis N. Butow, MPH, PhD (4) NOTE: The authorship and affiliations for this blog post were updated on Wednesday, September 27th, 2023.

1. University of Amsterdam, Amsterdam, the Netherlands
2. O2PZ, Platform of Palliative Care, Amsterdam, the Netherlands
3. University Medical Center, Utrecht, the Netherlands
4. University of Sydney, School of Medical Psychology, Sydney, Australia

Ninety-two participants from 27 countries in one meeting

That is what the paper of Fallowfield et al¹ is showing us. In a multidisciplinary meeting of the American Society of Clinical Oncology the gaps in the care and support for patients with advanced or metastatic breast cancer were globally discussed. Ninety-two participants from 27 countries – spread all over the world – attended a meeting in the role of either healthcare professional, patient or patient advocate.

Such meetings are not uncommon. It is therefore not really remarkable that this multi-disciplinary American Society of Clinical Oncology-meeting reported unmet supportive care-needs over the world. Patients with metastases face many challenges, in any country or care setting.²

However, it is also well-known that healthcare needs vary substantially according to disease severity and across and within low, middle-income (LMIC) and high-income countries (HIC).³  In this Blogpost, we would like to argue that ‘real-life’ global oncology can develop further if the focus is on similarities as well as differences across LMICs and HICs by taking experiences in actual medical practice as a starting point and by including a perspective from sociology/anthropology too.

Too general/fragmented recommendations in the context of treatment and care

First, just like the authors of Fallowfield et al reported, it frequently occurs that advanced breast cancer (ABC) and metastatic breast cancer (MBC) are mentioned, without clearly specifying in which disease phase the patients are in: Having MBC with a life-expectancy of approximately 1-3 months, is very different from having MBC for years while being in good physical condition. Furthermore, being diagnosed with MBC some months to years after an initial diagnosis treated with curative intent has a different impact than being confronted with primary MBC which is already advanced and no longer curable (in particular in LMICs).² Both late-diagnosis of MBC as well as a poor prognosis, are more prevalent in LMIC than HIC where lack of resources and facilities may already limit optimal care and cure.^{3 4}

Although the authors provide recommendations, many elements that happen in actual medical practice are not mentioned (which seems logical, given the timeline of this one single meeting). It is however important to make distinctions in how the needs of this MBC group differ from those of patients with curative disease or of those who are terminally ill. This is important in the contextualization of key messages per stage of the disease across countries. Moreover, the importance of appropriate communication need to be differentiated on the basis of the disease stage also. Apart from different care and treatment options across countries, nuances regarding culturally appropriate communication can be important too.^5-8

Too general/fragmented recommendations in the context of organization of care

Second, the results from this multi-disciplinary American Society of Clinical Oncology-meeting show that organization of care was frequently defined as sub-optimal. This is not surprising either. Organization of care substantially differs across countries and therefore also warrants a more nuanced approach to depict a global perspective.⁹ Cancer registry data for instance, show how organization of care in HIC largely differ between hospitals¹⁰, whereas in LMIC, patients are already happy if they receive the appropriate care on-time, especially in an MBC situation.^{11 12} Concerns such as uncertainty about who will be the primary contact (both as a healthcare professional as well as caretaker) during the disease, is often irrelevant in LMIC, wheras in HIC (particularly among cancer that have already been studied extensively, such as MBC) that has become far more imperntant. ¹³

In summary, although we welcome global oncology meetings as a means to integrate various country-specific perspectives on treatment and care, differences, such as stage of disease and resources need to be considered to guarantee the success of such an approach. By including an anthropological/sociological perspective, the added value of such large international meetings could possibly be of additional value and the chance to guarantee ‘real’ global oncology will be higher. This is in line with a paper which was published by Khan et al,¹⁴ who report about the dangers of classifying countries as ‘rich’ or ‘poor’ since dichotomies create the sense of a hierarchy between people/countries. Possibly, by learning mutually across ‘low’, ‘middle’ and ‘high-income’ country contacts, global oncology (both in the context of appropriate treatment and care as well as on communication) will eventually become far more global.

References

1. Fallowfield L, Boyle FM, Travado L, et al. Gaps in Care and Support for Patients With Advanced Breast Cancer: A Report From the Advanced Breast Cancer Global Alliance. JCO Glob Oncol 2021;7:976-84.

2. Aalders KC, van Bommel AC, van Dalen T, et al. Contemporary risks of local and regional recurrence and contralateral breast cancer in patients treated for primary breast cancer. Eur J Cancer 2016;63:118-26.

3. Fitzmaurice C, Abate D, Abbasi N, 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 Oncol 2019;5(12):1749-68.

4. Pardo C, de Vries E. Breast and cervical cancer survival at Instituto Nacional de Cancerología, Colombia. Colomb Med (Cali) 2018;49(1):102-08.

5. Singer PA, Bowman KW. Quality end-of-life care: A global perspective. BMC Palliative Care 2002;1(1):4.

6. Ghoshal A, Salins N, Damani A, 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. J Glob Oncol 2019;5:1-12.

7. Chittem M, Norman P, Harris P. Primary Family Caregivers’ Reasons for Disclosing Versus Not Disclosing a Cancer Diagnosis in India. Cancer Nurs 2020;43(2):126-33.

8. Ozdogan M, Samur M, Bozcuk HS, et al. “Do not tell”: what factors affect relatives’ attitudes to honest disclosure of diagnosis to cancer patients? Support Care Cancer 2004;12(7):497-502.

9. Prager GW, Braga S, Bystricky B, et al. Global cancer control: responding to the growing burden, rising costs and inequalities in access. ESMO Open 2018;3(2):e000285.

10. IKNL. Cijfers over kanker 2020 [Available from: www.iknl.nl.]

11. de Sanjose S, Tsu VD. Prevention of cervical and breast cancer mortality in low- and middle-income countries: a window of opportunity. Int J Womens Health 2019;11:381-86.

12. Cleary J, Ddungu H, Distelhorst SR, 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 2013;22(5):616-27.

13. Fortier MA, Chung WW, Martinez A, et al. Pain buddy: A novel use of m-health in the management of children’s cancer pain. Comput Biol Med 2016;76:202-14.

14. Khan T, Abimbola S, Kyobutungi C, et al. How we classify countries and people-and why it matters. BMJ Glob Health 2022;7(6).