Paradigm Shift in the Organization of Pediatric Palliative Care in the Era of Healthcare Digitalization

In global and domestic pediatric palliative care, an epidemiological shift has occurred: from the prevalence of oncological pathology to severe neurological, orphan genetic diseases, and consequences of extreme prematurity. This dictates the need for long-term, high-tech support for technology-dependent patients at home. The traditional hospital-centric model demonstrates low efficiency, leading to the social blockage of intensive care beds, "opioidophobia" in primary care, and institutional gaps during the transition to the adult network.
To analyze the current organizational, regulatory, and clinical barriers of the pediatric palliative care system and assess the prospects for overcoming them using digital transformation.
In accordance with PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) guidelines, a systematic search of publications was conducted in PubMed, Scopus, Web of Science, The Cochrane Library, RSCI (eLibrary), and CyberLeninka databases for the period 2018–2026. Search queries included: "pediatric palliative care", "telemedicine", "Internet of Medical Things", "electronic patient-reported outcomes", "transition care". The review included 42 relevant sources. It was established that overcoming the growing personnel deficit, geographical dispersion, and legal collisions requires a paradigm shift from a reactive to a proactive model. The necessity of creating unified regional digital ecosystems is substantiated.
A viable direction for the industry's development is the integration of Internet of Things technologies in medicine, the use of gaming platforms to collect electronic patient-reported outcome measures (ePROMs), predictive smart registries, and hybrid telemedicine models.

1. Gruenberg EM. The failures of success. Milbank Mem Fund Q Health Soc. 1977;55(1):3‒24.

2. Haggerty RJ, Roghmann KJ, Pless IB. Child health and the community. New York: John Wiley & Sons; 1975.

3. Razzamazova OV, Yaichnikov VP. Development of palliative care for children and adults: foreign experience. Nauchnoe obozrenie. Pedagogicheskie nauki. 2019;(2-2):113‒116. EDN: EZPBGF

4. Polevichenko EV. International principles and standards in the work of mobile visiting palliative medical care units for children in the Russian Federation. Pallium: palliativnaya i khospisnaya pomoshch’. 2024;(2):8‒15. EDN: QOTPIN

5. Crowe A, McCauley R, Corcoran Y, et al. Bereaved parents’ perspectives of factors influencing decision-making about place of end-of-life care for children with life-limiting, life-threatening conditions: an all-Ireland qualitative study. BMC Palliat Care. 2025;24(1):294. doi: 10.1186/s12904-025-01922-z

6. Zmanovskaya VA, Tropina EP, Shaitarova AV, et al. Regional register of children requiring palliative care (example of Tyumen region). Russian Pediatric Journal. 2022;3(1):125. EDN: EOUPCE

7. Burlutskaya AV, Statova AV, Mamyan EV. The state of palliative care for children in the Krasnodar region. Effektivnaya farmakoterapiya. 2019;15(43):6‒9. doi: 10.33978/2307-3586-2019-15-43-6-9 EDN: IXKYVO

8. Ishutin AA. Improving the organization of palliative medical care for the child population at the regional level [dissertation abstract. Moscow; 2025. 25 p. (In Russ.)

9. Turdumatova MK, Savva NN, Makimbetov EK, et al. Palliative care for children: global trends and development prospects in the Kyrgyz Republic. Evraziyskiy zhurnal zdravookhraneniya. 2025;(1):18‒27. doi: 10.54890/1694-8882-2025-1-18 EDN: QLTPJK

10. Islamova RI, Minaeva NV, Baranova SP, et al. Development of children’s palliative care in Perm Krai. Current pediatrics. 2023;22(3):246‒253. doi: 10.15690/vsp.v22i3.2579 EDN: PYCMWZ

11. Orlova NL, Kupriyanova AI, Smirnova LV, et al. Regional experience in providing palliative medical care to children with cystic fibrosis. Pallium: palliativnaya i khospisnaya pomoshch’. 2024;(2):31‒39. EDN: WVUDIR

12. Ogryzko EV, Shelepova EA. The current state of palliative care in the Russian Federation (2019-2024). Manager zdravoochranenia. 2026;(1):37‒45. doi: 10.21045/1811-0185-2026-1-37-45 EDN: RGDLNC

13. Baranova SP, Berber IE, Minaeva NV. Organization of specialized palliative medical care for children in a hospital setting. In: Topical issues of pediatrics: proceedings of the interregional scientific and practical conference dedicated to the 100th anniversary of Perm pediatrics. Perm: Perm National Research Polytechnic University; 2022. P. 33‒37. (In Russ.). EDN: RDQAJD

14. Buzanov DV. Description of a case of long-term successful home-based management of a patient with a rare variant of hereditary motor-sensory neuropathy on respiratory support. Pallium: palliativnaya i khospisnaya pomoshch’. 2025;(3):32‒38. EDN: VJPXGH

15. Kolomiychenko ME. Improving the activities of the palliative care system [dissertation abstract. Moscow; 2022. 24 p. (In Russ.). EDN: OCCDIV

16. Krivosheev VV, Bazenko AE. Socio-managerial aspects of providing palliative care to children in the Kaliningrad Region. Social Competence. 2022;7(2-3):218‒227. EDN: RHRTFE

17. Grigoryeva IA, Maksimov IL, Saushev AA. The use of medical devices in palliative care: review and prospects. Palliative medicine and rehabiliation. 2023;(4):47‒49. EDN: QOGXIW

18. Shchepin VO, Telnova EA, Karpova OB, Proklova TN. Palliative care: history, current state, perspectives. Bulletin of Semashko National research institute of public health. 2018;(2):98‒110. EDN: XUWAUH

19. Medvedeva DM, Narkevich IA, Nemyatykh OD. Analysis of the availability of medicines for children in need of palliative medical care. Farmakoekonomika: modern pharmacoeconomics and pharmacoepidemiology. 2021;14(2):167‒179. doi: 10.17749/2070-4909/farmakoekonomika.2021.094 EDN: IBNOBA

20. Nozdrachev DI, Zamyatin KA, Korostichenko EI, Balanovsky VV. Ethical guidelines in pediatric palliative care: analysis of Russian legislation and methodological recommendations. Ethical thought. 2023;23(2):66‒81. doi: 10.21146/2074-4870-2023-23-2-66-82 EDN: IDGDZP

21. Ryazantseva TP, Ibragimov AN. Specific features of palliative care for patients with cystic fibrosis experience of the Moscow multidisciplinary centre for palliative care, Moscow City Health Department, in 2024-2025. Pallium: palliativnaya i khospisnaya pomoshch’. 2025;(3):6‒8. EDN: ZOIWPW

22. Joren CY, Kars MC, Kremer LC, et al. Parents’ and healthcare professionals’ experiences with the content of an individual care plan for pediatric palliative care: a mixed-method study. Palliat Care Soc Pract. 2024;18:26323524241277572. doi: 10.1177/26323524241277572

23. Kuznetsova OV, Maslakova SI, Zhuravleva NI, Smagina TN. Medical-social expertise as a kind of palliative care. Medico-sotcialnye problemy invalidnosty. 2019;(2):76‒83. EDN: WGJOSK

24. Busse TS, Jux C, Kernebeck S, et al. Participatory design of an electronic cross-facility health record (echr) system for pediatric palliative care: a think-aloud study. Children (Basel). 2021;8(10):839. doi: 10.3390/children8100839

25. Busse TS, Kernebeck S, Dreier LA, et al. Planning for implementation success of an electronic cross-facility health record for pediatric palliative care using the Consolidated Framework for Implementation Research (CFIR). Int J Environ Res Public Health. 2022;19(1):453. doi: 10.3390/ij erph19010453

26. Lebedev GS, Nevzorova DV, Klimenko GS, et al. The use of digital technology in palliative care. Pallium: palliativnaya i khospisnaya pomoshch’. 2019;(2):47‒51. EDN: VVUYPP

27. Silva-Ferreira M, Cruz S, Luís MS, et al. Mapping study on AI-based technologies in palliative care - a scoping study. BMC Palliat Care. 2025;24(1):274. doi: 10.1186/s12904-025-01909-w

28. Steindal SA, Winger A, Riiser K, et al. Health technologies and infrastructures for supporting home-based pediatric palliative care: scoping review. J Med Internet Res. 2025;27:e70687. doi: 10.2196/70687

29. Ludupova EYu, Belikova AO, Tyrkheeva NR, Bashkueva EYu. Implementation of a project approach in providing home palliative medical care to the adult population in rural areas through remote monitoring. Far Eastern State Medical University. 2024;(4):93‒99. doi: 10.35177/1994-5191-2024-4-15 EDN: MDASRL

30. Namasivayam P, Bui DT, Low C, et al. Use of telehealth in the provision of after-hours palliative care services in rural and remote Australia: A scoping review protocol. PLoS One. 2022;17(1):e0261962. doi: 10.1371/journal.pone.0261962

31. Peñarrubia-San-florencio L, Junior CG, Ricart S, et al. Family perspectives and experiences on implementing telehealth in pediatric palliative care: a qualitative approach. Eur J Pediatr. 2025;184(5):287. doi: 10.1007/s00431-025-06124-6

32. Steen-Olsen EB, Pappot H, Green A, et al. Feasibility of monitoring patients who have cancer with a smart t-shirt: protocol for the OncoSmartShirt study. JMIR Res Protoc. 2022;11(10):e37626. doi: 10.2196/37626

33. Meyerheim M, Karamanidou C, Payne S, et al. MyPal-Child study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients. BMJ Open. 2021;11(4):e045226. doi: 10.1136/bmjopen-2020-045226

34. Hoffmann S, Schraut R, Kröll T, et al. AquaScouts: epros implemented as a serious game for children with cancer to support palliative care. Front Digit Health. 2021;3:730948. doi: 10.3389/fdgth.2021.730948

35. Shkodra M, Urrizola A, Fallon M, et al. The MyPath pain pathway: developing a digital patient-centred care pathway for cancer pain. J Pain Symptom Manage. 2025;70(6):592‒601. doi: 10.1016/j.jpainsymman.2025.08.012

36. Garani-Papadatos T, Natsiavas P, Meyerheim M, et al. Ethical principles in digital palliative care for children: the MyPal project and experiences made in designing a trustworthy approach. Front Digit Health. 2022;4:730430. doi: 10.3389/fdgth.2022.730430

37. Vyazova YuV, Kumirova EV, Emtsova VV. Interdisciplinary training is the basis of palliative care education. Experience of the Palliative pediatrics department of Pirogov university. Metodologiya i tekhnologiya nepreryvnogo professional’nogo obrazovaniya. 2024;(4):22‒27. doi: 10.24075/MTCPE.2024.32 EDN: PHRCBW

38. Kernebeck S, Busse TS, Jux C, et al. Evaluation of an electronic medical record module for nursing documentation in paediatric palliative care: involvement of nurses with a think-aloud approach. Int J Environ Res Public Health. 2022;19(6):3637. doi: 10.3390/ij erph19063637

39. Karataeva GE, Miroshnichenko EA. Assessment of palliative care nancing standards suf ciency in Khanty-Mansi Autonomous Okrug-Yugra. Vestnik Surgutskogo gosudarstvennogo universiteta. 2025;13(3):42‒52. doi: 10.35266/2949-3455-2025-3-4 EDN: DCDPJM