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Browsing by Author "Bhadelia, Afsan"
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Item Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology(Elsevier, 2024) Kwete, Xiaoxiao J.; Bhadelia, Afsan; Arreola-Ornelas, Héctor; Mendez, Oscar; Rosa, William E.; Connor, Stephen; Downing, Julia; Jamison, Dean; Watkins, David; Calderon, Renzo; Cleary, Jim; Friedman, Joseph R.; De Lima, Liliana; Ntizimira, Christian; Pastrana, Tania; Pérez-Cruz, Pedro E.; Spence, Dingle; Rajagopal, M. R.; Vargas Enciso, Valentina; Krakauer, Eric L.; Radbruch, Lukas; Knaul, Felicia Marie; Medicine, School of MedicineContext: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. Objectives: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. Methods and results: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. Conclusions: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.Item The evolution of serious health-related suffering from 1990 to 2021: an update to The Lancet Commission on global access to palliative care and pain relief(Elsevier, 2025) Knaul, Felicia M.; Arreola-Ornelas, Héctor; Kwete, Xiaoxiao J.; Bhadelia, Afsan; Rosa, William E.; Touchton, Michael; Méndez-Carniado, Oscar; Vargas Enciso, Valentina; Pastrana, Tania; Friedman, Joseph R.; Connor, Stephen R.; Downing, Julia; Jamison, Dean T.; Krakauer, Eric L.; Watkins, David; Calderon-Anyosa, Renzo; Garcia-Santisteban, Rodrigo; Nargund, Renu S.; Cleary, Jim; De Lima, Liliana; Gafer, Nahla; Grant, Liz; Ntizimira, Christian; Pérez-Cruz, Pedro E.; Rajagopal, M. R.; Spence, Dingle; Vila, Paul; Radbruch, Lukas; Medicine, School of MedicineBackground: The Lancet Commission on global access to palliative care and pain relief introduced the concept of serious health-related suffering (SHS) to measure the worldwide dearth of palliative care. This Article provides an extended analysis of SHS from 1990 to 2021 and the corresponding global palliative care need. Methods: This Article is the first to apply the SHS 2·0 method published in 2024, incorporating prevalence data from the Global Burden of Diseases, Injuries, and Risk Factors Study to improve non-decedent estimates that account for country-level epidemiological variation; adjusting for non-decedent double counting of HIV/AIDS, cancer, cerebrovascular disease, and dementia; improving the non-decedent estimates for cancer using survivorship data from the Global Cancer Observatory and for HIV/AIDS incorporating access to antiretroviral therapy; differentiating by sex; considering more specific age groups allowing for better estimates, especially in children; and adding endocrine, metabolic, blood, and immune disorders to the health conditions causing SHS. We describe SHS trends globally and within country income groups, differentiating among decedents and non-decedents, by health conditions, sex, and across child and adult age groups. Findings: The SHS global burden increased by 74% between 1990 and 2021 to almost 73·5 million individuals, with population growth accounting for only half of that increase. Low-income and middle-income countries (LMICs) accounted for 80% of SHS, with an increase of 83% from 1990 to 2021 compared with a 46% increase in high-income countries (HICs). Between 1990 and 2021, the decedent burden increased by 35%, whereas SHS in non-decedents more than doubled, accounting for 63% of SHS by 2021. The proportion of SHS from communicable diseases declined, especially in LMICs; however, the absolute number stayed relatively stable and even increased from 2019 to 2021 with the start of the COVID-19 pandemic. SHS from non-communicable diseases drastically increased, led by cancer (excluding leukaemia), cardiovascular diseases, and dementia in HICs. HIV/AIDS continued to be a major contributor, accounting for a substantial share of SHS in sub-Saharan Africa. The share of SHS in children decreased from 25% of SHS in 1990 to 14% in 2021 and accounted for 33% of SHS in low-income countries, compared with 2% in HICs. In 2021, SHS in low-income countries was concentrated in female individuals aged 20-49 years (affecting 59% of this population); in HICs, SHS was concentrated in female individuals aged 70 years and older (affecting 54% of this population and probably related to dementia). Interpretation: SHS and the associated need for palliative care is a major and persistent but not insurmountable challenge for health systems worldwide. Our findings highlight the urgency to both reduce the avoidable SHS burden through prevention and treatment, and guarantee comprehensive, universal access to palliative care as an equity and health system imperative, especially in LMICs.