"Our Knysna Sedgefield Hospice staff delivers five-star palliative care to our patients," says Karen Gschwend, in South Africa. Photo used with permission.

Measuring the Burden of Serious Health-Related Suffering

By Afsan Bhadelia, Assistant Professor, Purdue University, USA; and
Xiaoxiao J. Kwete, MBBS, MS, Visiting Scholar, University of Miami Institute for Advanced Study of the Americas, USA

The science of suffering measurement has lagged behind advancements in burden of disease measurement, which only begins to account for sequelae and symptoms associated with serious health-related suffering (SHS).1 Notably, suffering is not captured in standard population health metrics critical to informing health systems priority-setting, planning, and implementation despite the value of suffering alleviation to patients and families.

The Lancet Commission on Global Access to Palliative Care and Pain Relief introduced the concept of SHS to ground development of a summary measure that reflects palliative care need worldwide and allows for generation of first estimates of the burden of SHS, its distribution, and related inequities.1 Measurement of SHS can be used to inform health systems decision-making in a direction that advances people-centered care. The SHS estimates published in the Lancet Commission report were based on the World Health Organization’s mortality database, Global Health Estimates (WHO GHE), and 20 life-threatening and life-limiting conditions that generate the most physical and psychological suffering globally.1 The report summarized methods for calculating the burden of SHS with details presented in an online appendix to the report.2 

Building on the Lancet report

An updated methodology for SHS 2.0, building on the work of the Lancet Commission on SHS 1.0, and titled “Global Assessment of Palliative Care Need: Serious health-related suffering measurement methodology” was published online in the Journal of Pain and Symptom Management on May 13, 2024. 

CanSupport's home care team in India. Photo by Bela Sharma. Used with permission.

This methodological paper, which sought to strengthen the measurement of SHS since the work of the Lancet Commission, was produced by an interdisciplinary team of researchers at the Research Hub on Global Access to Palliative Care and Pain Relief. The Research Hub follows on the Secretariat of the Lancet Commission and is co-led by the University of Miami Institute for Advanced Study of the Americas and the International Association for Hospice and Palliative Care. 

Goal of the Research Hub

The Research Hub seeks to advance universal palliative care through policy-oriented evidence generation and dissemination. The recent publication was jointly first authored (Xiaoxiao J. Kwete and Afsan Bhadelia), second authored (Hector Arreola-Ornelas), and jointly senior authored (Eric Krakauer, Lukas Radbruch, and Felicia M. Knaul, chair of the Lancet Commission) by core researchers involved in the Lancet Commission and included former commissioners and Scientific Advisory Committee, along with ongoing and new collaborators, in its authorship. 

A framework & guide to calculate SHS burden

The recent SHS 2.0 methodology article presents the conceptual framework and a systematic step-by-step guide to calculate the burden of SHS at the national level, documenting both the core methodology of SHS measurement developed by the Lancet Commission and updates made since the publication of its report. As the article describes, four key adjustments have been made to strengthen the scientific rigor of SHS measurement:

  1. Update the main database from WHO GHE to the Institute for Health Metrics and Evaluation’s Global Burden of Disease database to incorporate both mortality as well as prevalence to account for country-level epidemiological differences in survivor data, allowing for more granular demographical disaggregation (analysis by smaller sub-groups according to demographic factors) in non-decedent estimation.
  2. Adjust for double counting in cancer, HIV, cerebrovascular diseases, and dementia.
  3. Account for data on cancer survivorship and on access to antiretroviral therapy for HIV/AIDS to further improve non-decedent estimates.
  4. Increase specificity of pediatric SHS estimates through the addition of endocrine, metabolic, blood, and immune disorders to the existing 20 health conditions and as condition 21, including type 1 diabetes and thalassemia for children, as well as sickle cell disorders for both children and adults. The methodological paper specifically details calculation of the number of people with SHS and the number of days of SHS, with recommended disaggregation, for example, by age group or SHS-associated condition to unmask inequities and help target health systems responses.
Dr. Juvie Umali of Madre De Amor Hospice Foundation provides compassionate care during a home visit to a patient in Laguna, Philippines. Photo by Del Rosario. Used with permission.

Ongoing refinements are expected with future iterations of SHS measurement. Refinements are fundamental to accurately monitor the evolving SHS burden and associated palliative care need, and, in turn, assess health system performance and design strategies that meet this need. For example, data on SHS burden in a country can inform policy development, costing, and integration of palliative care services into broader health insurance benefits packages. 

How it helps researchers & practitioners

The recently published article can aid palliative care researchers and practitioners worldwide in not only understanding how the SHS estimates are generated and their limitations, but also guide calculation of regional or sub-national estimates that account for local data and are in alignment with local advocacy and policy needs. 

Evidence on the magnitude of the SHS burden can highlight the urgent need to improve access to care across the lifespan and care continuum, inclusive of palliative and end-of-life care. Further, efforts to improve SHS measurement dovetail with wider measurement of suffering work to develop suffering-intensity adjusted life years (SALYs), a new composite metric introduced by the Lancet Commission to assess interventions based on suffering averted,1,3 as has also been highlighted in a companion article by Lukas Radbruch.4 Groundwork on examining the different facets of the value of alleviating SHS to individuals and families is ongoing and serves as an input to SALYs development alongside SHS estimates.5

Together, these efforts can provide a rationale for strengthening priority-setting and investments to achieve universal access to palliative care and pain relief, a core component of universal health coverage and Goal 3 of the United Nation's 2030 Agenda for Sustainable Development: ensure health and well-being for all, at every stage of life. 

Afsan Bhadelia, PhD, MS is currently also a Visiting Scholar at the University of Miami Institute for Advanced Study of the Americas in Florida. 
Xiaoxiao J. Kwete, MBBS, MSc is also affiliated with the Yangzhou Philosophy and Social Science Research and Communication Center, China

References

1. Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the Access Abyss in Palliative Care and Pain Relief—An imperative of universal health coverage: the Lancet Commission report. Lancet 2018; 391(10128): 1391-1454.

2. Knaul FM, Farmer PE, Krakauer EL, et al. Technical Note and Data Appendix for “Alleviating the Access Abyss in Palliative Care and Pain Relief—An imperative of universal health coverage: the Lancet Commission report. Background document.  University of Miami Institute for Advanced Study of the Americas, 2017.

3. Knaul F, Bhadelia A, Atun R, De Lima L, Radbruch L. Palliative Care: An essential facet of universal health coverage. Lancet Glob Health 2019; 7(11): e1488.

4. Radbruch L. The Metrics of Suffering. IAHPC Newsletter, December 2023.

5. Bhadelia A, Greaves N, Doubova S, Knaul FM. Understanding the Value of Alleviating Health-Related Suffering and Palliative Care Centered in Lived Experience: The SAVE Toolkit. Research Square rs-3716807 [Preprint] 2023; published online Dec 7.

Read more of this week's issue of Pallinews

Grants in Action

EAPC Scholars share tips on research & more.

Plus Fred's Journey is a thoughtful article on the challenges of a husband's long-undiagnosed Parkinson's, a moving companion to the Palliative Care in Neurological Conditions online course, free to IAHPC members. The last live segment, on palliative care in persons with severe, acute brain injury, is on July 25.