Keywords
доступність паліативної допомоги
охоплення населення
планування медичної допомоги
електронна охорона здоров’я
How to Cite
Abstract
In press
Background. Rational and strategically sound planning of palliative care services, specialized staffing and funding at the national level is impossible without scientifically substantiated, empirically verified estimates of actual population needs. This necessitates the use of diverse and complementary methodological approaches to predictive modelling.
Aim. To systematize, critically analyze and structure current methodological approaches to assessing the actual accessibility and population coverage of palliative care and forecasting the need for such care, as well as to comprehensively determine the strategic, managerial and clinical-epidemiological potential of patient registries in the context of international best practices and the current realities of the Ukrainian healthcare system.
Materials and Methods. Scientific publications indexed in PubMed, Scopus and Google Scholar from 2012 to 2026 and World Health Organization European Region palliative care standards served as materials for this literature-based theoretical study. Demographic, epidemiological, Delphi-based and Serious Health-related Suffering forecasting models were analyzed in depth, along with the operation of digital eHealth systems, electronic health records and databases in the European Union, the United States and Ukraine. The study was conducted as part of the first author's dissertation.
Research Ethics. The study did not involve patients or animals and therefore did not require approval by an ethics committee.
Results. Contemporary methods for forecasting palliative care needs were grouped into quantitative and qualitative approaches. Combined models were examined using long-term projections for the United Kingdom to 2040. International evidence demonstrates marked differences in palliative-care development and data capacity between countries. Registry-based approaches were considered using England and Sweden, where the Swedish Register of Palliative Care reported coverage of 60% of all deaths in 2024. For Ukraine, a unified palliative-care registry integrated with the central eHealth database is considered a prospective organizational model rather than an existing national system.
Conclusions. Deep technical and semantic integration of information systems and implementation of standardized registries of palliative care patients are important prerequisites for estimating the funding required for service packages under Ukraine’s Medical Guarantees Programme.
Keywords: organization of health care, palliative care accessibility, population coverage, healthcare planning, eHealth.
References
Connor SR, editor. Global Atlas of Palliative Care. 2ⁿᵈ ed. London: Worldwide Hospice Palliative Care Alliance; 2020. 120 p. Available at: https://surli.cc/nycjde
Murtagh FEM, Bausewein C, Verne J, Groeneveld EI, Kaloki YE, Higginson IJ. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2014;28(1):49-58. DOI: 10.1177/0269216313489367. PMID: 23695827.
World Health Organization. Planning and implementing palliative care services: a guide for programme managers. Geneva: WHO; 2016. 91 p. Available at: https://iris.who.int/bitstream/handle/10665/250584/9789241565417-eng.pdf
Clark D, Baur N, Clelland D, Garralda E, López-Fidalgo J, Connor S, Centeno C. Mapping Levels of Palliative Care Development in 198 Countries: The Situation in 2017. J Pain Symptom Manage. 2020;59(4):794-807.e4. DOI: 10.1016/j.jpainsymman.2019.11.009. PMID: 31760142.
Gómez-Batiste X, Connor S, editors. Building Integrated Palliative Care Programs and Services. Vic: University of Vic–Eumo Editorial; 2017. 379 p. Available at: https://surl.li/fxscoy
Morrison RS, Meier DE. Clinical practice. Palliative care. N Engl J Med. 2004;350(25):2582-90. DOI: 10.1056/NEJMcp035232. PMID: 15201415.
Rosenwax LK, McNamara B, Blackmore AM, Holman CDJ. Estimating the size of a potential palliative care population. Palliat Med. 2005;19(7):556-62. DOI: 10.1191/0269216305pm1067oa. PMID: 16295289.
Gómez-Batiste X, Martínez-Muñoz M, Blay C, Espinosa J, Contel JC, Ledesma A. Identifying needs and improving palliative care of chronically ill patients: a community-oriented, population-based, public-health approach. Curr Opin Support Palliat Care. 2012;6(3):371-8. DOI: 10.1097/SPC.0b013e328356aaed.
Jones J, Hunter D. Consensus methods for medical and health services research. BMJ. 1995;311(7001):376-80. DOI: 10.1136/bmj.311.7001.376. PMID: 7640549.
Bone AE, Gomes B, Etkind SN, Verne J, Murtagh FEM, Evans CJ, Higginson IJ. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliat Med. 2018;32(2):329-36. DOI: 10.1177/0269216317734435. PMID: 29017018.
Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage. 2013;45(6):1094-106. DOI: 10.1016/j.jpainsymman.2012.05.011. PMID: 23017628.
Keeney S, Hasson F, McKenna H. The Delphi Technique in Nursing and Health Research. Chichester: Wiley-Blackwell; 2011. 208 p. DOI: 10.1002/9781444392029.
Nesterenko VG, Shevchenko VV. Calculation of the national need for palliative care by the refined method of trends in the conditions of a military crisis. Eastern Ukrainian Medical Journal. 2024;12(3):711-20. DOI: 10.21272/eumj.2024;12(3):711-720.
United Nations, Department of Economic and Social Affairs, Population Division. World Population Ageing 2019: Highlights. New York: United Nations; 2019. 24 p. (ST/ESA/SER.A/430). Available at: https://www.un.org/en/development/desa/population/publications/pdf/ageing/WorldPopulationAgeing2019-Highlights.pdf
Holovanova IA, Shevchenko AS. The issue of patient-oriented organization of palliative and hospice care in Ukraine. Experimental and Clinical Medicine. 2021;90(2):21-7. DOI: 10.35339/ekm.2021.90.2.hos. [In Ukrainian].
Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med. 2017;15(1):102. DOI: 10.1186/s12916-017-0860-2. PMID: 28514961.
National Palliative and End of Life Care Partnership. Ambitions for Palliative and End of Life Care: A National Framework for Local Action 2015-2020. London: National Palliative and End of Life Care Partnership; 2015. 50 p. Available at: http://endoflifecareambitions.org.uk/wp-content/uploads/2015/09/Ambitions-for-Palliative-and-End-of-Life-Care.pdf
Nesterenko VG, Shevchenko AS, Zelenska KO, Hryhorov MM. Clinical and epidemiological characteristics of disabling neurological diseases (literature review). International Neurological Journal. 2024;20(4):176-84. DOI: 10.22141/2224-0713.20.4.2024.1079. [In Ukrainian].
Bausewein C, Daveson BA, Currow DC, Downing J, Deliens L, Radbruch L, et al. EAPC White Paper on outcome measurement in palliative care: improving practice, attaining outcomes and delivering quality services – recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliat Med. 2016;30(1):6-22. DOI: 10.1177/0269216315589898. PMID: 26068193.
Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000;32(4):1008-15. DOI: 10.1046/j.1365-2648.2000.01567.x.
Rajkomar A, Oren E, Chen K, Dai AM, Hajaj N, Hardt M, et al. Scalable and accurate deep learning with electronic health records. NPJ Digit Med. 2018;1:18. DOI: 10.1038/s41746-018-0029-1. PMID: 31304302.
Holovanova IA, Shevchenko AS. Evaluation of packaged funding programs for palliative and hospice care by the National Health Service of Ukraine. Experimental and Clinical Medicine. 2021;90(4):45-52. DOI: 10.35339/ekm.2021.90.4.hos. [In Ukrainian].
Avati A, Jung K, Harman S, Downing L, Ng A, Shah NH. Improving palliative care with deep learning. BMC Med Inform Decis Mak. 2018;18(Suppl_4):122. DOI: 10.1186/s12911-018-0677-8. PMID: 30537977.
Stjernswärd J, Foley KM, Ferris FD. The public health strategy for palliative care. J Pain Symptom Manage. 2007;33(5):486-93. DOI: 10.1016/j.jpainsymman.2007.02.016. PMID: 17482035.
Nesterenko VG, Redka IV, Sukhonosov RO, Grygorov SM, Shevchenko AS, Aliieva TD. Forecasting the need for palliative and hospice care using the creeping trend method with segment smoothing. Wiad Lek. 2024;77(5):980-4. DOI: 10.36740/WLek202405116. PMID: 39008586.
Nesterenko VG, Shevchenko AS, Shevchenko VV, Riga O, Redka IV. Predicting the need for palliative and hospice care for children in Ukraine using the moving average trend method. Neonatol Surg Perinat Med. 2025;15(4):212-20. DOI: 10.24061/2413-4260.XV.4.58.2025.30.
Arias-Casais N, Garralda E, Rhee JY, de Lima L, Pons JJ, Clark D, et al. EAPC Atlas of Palliative Care in Europe 2019. Vilvoorde: EAPC Press; 2019. 197 p. Available at: http://hdl.handle.net/10171/56787
Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Kwete XJ, 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):1391-454. DOI: 10.1016/S0140-6736(17)32513-8. PMID: 29032993.
Holovanova IA, Shevchenko AS. Determination of the main needs of palliative patients and ways of their provision in the health care system of Ukraine. Experimental and Clinical Medicine. 2021;90(3):88-94. DOI: 10.35339/ekm.2021.90.3.hos. [In Ukrainian].
Sleeman KE, de Brito M, Etkind S, Nkhoma K, Guo P, Higginson IJ, Gomes B, Harding R. The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. Lancet Glob Health. 2019;7(7):e883-92. DOI: 10.1016/S2214-109X(19)30172-X. PMID: 31129125.
Nesterenko V, Burzyńska J. Justification of the model of optimized system of providing palliative and hospice care to the population of Ukraine. Inter Collegas. 2024;11(3):35-44. DOI: 10.35339/ic.11.3.neb.
Order of the Ministry of Health of Ukraine No.1308 of 4 Jun 2020 "On improving the organization of palliative care provision in Ukraine". Ministry of Health of Ukraine. [Internet]. Available at: https://zakon.rada.gov.ua/laws/show/z0609-20 [in Ukrainian].
Cabinet of Ministers of Ukraine. Resolution No.411 of 25 Apr 2018 "Some issues of the electronic healthcare system". Legislation of Ukraine. [Internet]. Available at: https://zakon.rada.gov.ua/laws/show/411-2018-%D0%BF [in Ukrainian].
Nesterenko VG, Shevchenko AS, Zhuravel Ya. Prevention of neurodegenerative diseases’ complications in palliative patients at home hospice: organizational principles. Proceedings of the international scientific conference "The greatest humankind achievements in healthcare and veterinary medicine" (Latvia, Riga, 7–8 Feb 2024). P. 96-9. DOI: 10.30525/978-9934-26-401-6-26. [In Ukrainian].
Currow DC, Allingham S, Yates P, Johnson C, Clark K, Eagar K. Improving quality in palliative care: the role of the Palliative Care Outcomes Collaboration. J Palliat Med. 2015;18(8):669-76. DOI: 10.1089/jpm.2015.0065
European Commission. State of Health in the EU: Companion Report 2019. Luxembourg: Publications Office of the European Union; 2019. Available at: https://health.ec.europa.eu/state-health-eu/companion-report_en.
Gliklich RE, Dreyer NA, Leavy MB, editors. Registries for Evaluating Patient Outcomes: A User's Guide. 3rd ed. Rockville: Agency for Healthcare Research and Quality; 2014. (AHRQ Publication No.13(14)-EHC111). https://www.ncbi.nlm.nih.gov/books/NBK208616/
Public Health England. Electronic Palliative Care Co-ordination Systems (EPaCCS) in England: survey of clinical commissioning groups. London: Public Health England; 2014. 53 p. Available at: https://www.gov.uk/government/publications/electronic-palliative-care-co-ordination-systems-epaccs
Lundström S, Axelsson B, Heedman PA, Fransson G, Fürst CJ. Developing a national quality register in end-of-life care: the Swedish experience. Palliat Med. 2012;26(4):313-21. DOI: 10.1177/0269216311414758. PMID: 21737480.
Svenska palliativregistret. Annual Report 2024. Kalmar: Swedish Register of Palliative Care; 2025. Available at: https://palliativregistret.se/media/0fkghgas/%C3%A5rsrapport-2024.pdf [in Swedish].
National Quality Forum. Palliative and End-of-Life Care 2015–2016: Technical Report. Washington, DC: National Quality Forum; 2016. 210 p. Available at: https://www.qualityforum.org/Publications/2016/12/Palliative_and_End-of-Life_Care_2015-2016.aspx.
Bredenkamp C, Dale E, Doroshenko O, Dzhygyr Y, Habicht J, Hawkins L, et al. Health Financing Reform in Ukraine: Progress and Future Directions. Washington, DC: World Bank; 2022. 108 p. DOI: 10.1596/978-1-4648-1840-0.
Electronic Health State Enterprise. Electronic healthcare system: central database and medical information systems. Kyiv: eHealth; 2024. [Internet]. Available at: https://ehealth.gov.ua/2024/05/07/shho-take-medychni-informatsijni-systemy-ta-yaki-poslugy-vony-nadayut/ [in Ukrainian].
Kovalenko AS, Ryzhkov OV. Semantic and technical interoperability of medical information systems in the eHealth architecture of Ukraine. Nauk Zap NaUKMA Comput Sci. 2020;3:72-9. DOI: 10.18523/2617-3808.2020.3.72-79. [In Ukrainian].
National Health Service of Ukraine. Medical Guarantees Programme: mobile palliative medical care for adults and children. Kyiv: NHSU; 2022. [Internet]. Available at: https://nszu.gov.ua/en/advertisements/ogolosennia-pro-ukladennia-dogovoriv-pro-medicne-obs-925 [in Ukrainian].
Nesterenko VG, Shevchenko AS. Ways to improve palliative and hospice care in Ukraine in the conditions of long-term reform of the health care system. Proceedings of the 5th scientific and practical conference with international participation "Healthcare in Ukraine: problems and ways to solve them" (Ukraine, Kharkiv, 28 Oct 2022). DOI: 10.5281/zenodo.7327855. [In Ukrainian].
Nesterenko VH, Peresypkina TV, Shevchenko OS, Sarkhadova II. Palliative and hospice care in the Kharkiv region in the first year of the war. Ukraine. Nation’s Health. 2023;73(3):106-12. DOI: 10.32782/2077-6594/2023.3/18.
Nesterenko VG, Krasnikova SO, Shevchenko AS. Media discussions about hospice and palliative care in Ukraine since the beginning of the war. Proceedings of the 6th scientific and practical conference with international participation "Public health in Ukraine: problems and ways to solve them" (Ukraine, Kharkiv, 2 Nov 2023). DOI: 10.5281/zenodo.10053065. [In Ukrainian].
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.