The effectiveness of the comprehensive assessment program for children with palliative status: the results of implementation and the dynamics of key indicators

Relevance. Currently, there is a need to develop and implement innovative approaches and tools that will help healthcare professionals provide care more effectively and in a timely manner, as well as coordinate their actions to provide comprehensive care. The study was aimed at a comprehensive assessment of the effectiveness of a new program to optimize the activities of doctors providing palliative care to children.

The aim of the work was to identify changes in key indicators of the quality of medical activity after the implementation of the program.

Materials and methods. The sample included 30 specialists from various institutions providing palliative care for children, and the duration of follow up was 3 months from the launch of the program to its interim evaluation. The study was approved by the Ethics Committee of the N. N. Burdenko Voronezh State Medical University of the Russian Ministry of Health (Protocol No. 4 dated 16.10.2025). As part of the study, doctors and children’s parents signed voluntary informed consent forms. The analysis covered 19 standardized criteria, including the speed of informing parents and colleagues, the completeness and accuracy of medical records, the timeliness of appointments, the quality of interdisciplinary coordination and emotional support for families. The program is a comprehensive assessment calculator for children in palliative care. It allows doctors, nurses, and social workers to systematically collect data, identify priority intervention areas, and track the dynamics of a child’s condition over time.

Results. The results showed a statistically significant improvement in all measured parameters: the increase ranged from +0.5 to +1.8 points on a 5-point scale. The most significant increases were recorded in such indicators as the speed of clinical information exchange, the completeness of electronic medical records, and the effectiveness of interaction between doctors, nurses, and social workers. The growth of the integral indicator «Overall results» was particularly impressive from 2.7 to 4.1 points, which corresponds to a significant improvement of +1.4 (p<0.001).

Conclusions. The results confirm that the new program not only improves work organization, but also directly contributes to improving the safety and quality of child care in difficult clinical situations.

1. MuñozBlanco S., Raisanen J.C., Donohue P.K., Boss R.D. Enhancing pediatric palliative care for Latino children and their families: A review of the literature and recommendations for research and practice in the United States. Children. 2018; 5 (3): 31. https://doi.org/10.3390/children5030031

2. Istin A.A., Ledneva V.S. Calculator of comprehensive assessment for children with palliative status: certificate of state registration of computer program № 2025693698. Filed 17.11.2025; published 01.12.2025. Voronezh: FSBEI HE «Voronezh State Medical University named after N.N. Burdenko» of the Ministry of Healthcare of the Russian Federation; 2025. 1 p. (In Russ.).

3. Istin A.A., Ledneva V.S. Development and validation of a questionnaire for assessing the effectiveness of palliative medical care for children. Universum: Meditsina i Farmakologiia. 2025; (10): 9–12. (In Russ.). https://doi.org/10.32743/UniMed.2025.127.10.20923

4. Novikov G.A., Rudoy S.V., Vaisman M.A., Samoylenko V.V., Prokhorov B.M., Efimov M.A. Current state and prospects of palliative care development in the Russian Federation. Palliativnaia Meditsina i Reabilitatsiia. 2008; (3): 5–11. (In Russ.). https://doi.org/10.14328/pmr2008.3.5

5. Hoell J.I., Warfsmann J., Distelmaier F., Borkhardt A., Janßen G., Kuhlen M. Challenges of palliative care in children with inborn metabolic diseases. Orphanet J Rare Dis. 2018; 13 (1): 107. https://doi.org/10.1186/s13023-018-0855-5

6. Baker J.N., Levine D.R., Hinds P.S., Weaver M.S., Cunningham M.J., Johnson L., et al. Research Priorities in Pediatric Palliative Care. J Pediatr. 2015; 167 (2): 467–470.e3. https://doi.org/10.1016/j.jpeds.2015.05.002

7. Gvozd’ U. Yu., Vasil’eva O. L. Rights of children in need of palliative medical care. Aktual’nye Problemy Upravleniia Zdorov’em Naseleniia. 2021: 77–81. (In Russ.). https://doi.org/10.36719/2021/APUZN/77-81

8. Doherty M., Thabet C. Development and implementation of a pediatric palliative care program in a developing country. Front Public Health. 2018; 6: 272. https://doi.org/10.3389/fpubh.2018.00272

9. Novikov G.A., Zelenova O.V., Rudoy S.V., Abramov S.I. Strategy for the development of palliative medical care in the Russian Federation: from history to an effective system. Sovremennye Problemy Zdravookhraneniia i Meditsinskoi Statistiki. 2018; (2): 167–180. (In Russ.). https://doi.org/10.17749/2070-0204.2018.2.167-180

10. Brand S. R., Fasciano K., Mack J.W. Communication preferences of pediatric cancer patients: talking about prognosis and their future life. Support Care Cancer. 2017; 25 (3): 769–774. https://doi.org/10.1007/s00520-016-3458-x

11. García X., Cuervo M.I. Integration of Pediatric Palliative Care in Children with Cancer: A Systematic Review. J Pain Symptom Manage. 2018; 56 (2): 265–277. https://doi.org/10.1016/j.jpainsymman.2018.04.008

12. Buzin V.N., Nevzorova D.V., Buzina T.S. Population assessment of the quality and accessibility of the palliative medical care in 2021–2022. Russ J Prev Med. 2023; 26 (9): 11–17. https://doi.org/10.17116/profmed20232609111

13. Fadul N., Elsayem A., Palmer J.L., Del Fabbro E., Swint K., Li Z. et al. Supportive versus palliative care: what’s in a name? A survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer. 2009; 115 (9): 2013–2021. https://doi.org/10.1002/cncr.24206

14. Donnelly J.P., Downing K., Cloen J., Fragen P., Gupton A.W., Misasi J. et al. Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care. J Pain Symptom Manage. 2018; 55 (2): 304–314. https://doi.org/10.1016/j.jpainsymman.2017.08.016

15. Novikov G.A., Vvedenskaia E.S., Vaisman M.A., Rudoy S.V. History of the development of palliative medical care in the Russian Federation. Palliativnaia Meditsina i Reabilitatsiia. 2020; (2): 49–55. (In Russ.). https://doi.org/10.14328/pmr2020.2.49

16. França J.R.F.d.S., da Costa S.d.F.G., Lopes M.E. L., da Nóbrega M.M.L., Batista P.S.S.d.S., de Oliveira R.C. Existential experience of children with cancer under palliative care. Rev Bras Enferm. 2018; 71 (4): 2051–2057. https://doi.org/10.1590/0034-7167-2017-0270

17. Gvozd’ U. Yu., Peskova I.V. Experience in organizing a pediatric palliative care service in Nizhny Novgorod Oblast. Pallium: Palliativnaia i Khostpisnaia Pomoshch. 2021; (2): 28–34. (In Russ.). https://doi.org/10.31508/pallium2021.2.28

18. Connor S.R., Downing J., Marston J. Estimating the Global Need for Palliative Care for Children: A Crosssectional Analysis. J Pain Symptom Manage. 2017; 53 (2): 171–177. https://doi.org/10.1016/j.jpainsymman.2016.08.020

19. De Clercq E., Rost M., Pacurari N., Elger B.S., Wangmo T. Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines. Palliat Support Care. 2017; 15 (4): 474–489. https://doi.org/10.1017/S1478951516000882

20. Kaye E.C., Jerkins J., Gushue C.A., DeMarsh S., Sykes A., Lu Z. et al. Predictors of Late Palliative Care Referral in Children With Cancer. J Pain Symptom Manage. 2018; 55 (2): 281–290. https://doi.org/10.1016/j.jpainsymman.2017.08.014

21. Boyden J.Y., Curley M.A.Q., Deatrick J.A., Ersek M. Factors Associated With the Use of U.S. CommunityBased Palliative Care for Children With LifeLimiting or LifeThreatening Illnesses and Their Families: An Integrative Review. J Pain Symptom Manage. 2018; 55 (2): 267–280. https://doi.org/10.1016/j.jpainsymman.2017.08.013

22. Knaul F.M., Farmer P.E., Krakauer E.L., De Lima L., Bhadelia A., Jiang Kwete X. 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. https://doi.org/10.1016/S0140-6736(17)32513-8

23. Marston J., Boucher S., Downing J. International Children’s Palliative Care Network: A Global Action Network for Children With LifeLimiting Conditions. J Pain Symptom Manage. 2018; 55 (2): 297–303. https://doi.org/10.1016/j.jpainsymman.2017

24. Downing J., Namisango E., Harding R. Outcome measurement in paediatric palliative care: lessons from the past and future developments. Ann Palliat Med. 2018; 7 (Suppl 3): S151–S163. https://doi.org/10.21037/apm.2018.04.02

25. Rugol’ L.V., Son I. M., Starodubov V. I., Pogonin A. V. Some outcomes of healthcare reform. Sotsial’nye Aspekty Zdorov’ia Naseleniia. 2018; 64 (6): 1–19. (In Russ.). https://doi.org/10.21054/sazn2018.64.6.1-19

26. Moskvicheva M.G., Polinov M.M. Analysis of the state of palliative medical care in inpatient settings for urban and rural populations at the regional level. Meditsinskaia Nauka i Obrazovanie Urala. 2019; 20 (3): 101–106. (In Russ.). https://doi.org/10.26442/20798323.2019.3.101-106

27. Fadeeva E.V. Palliative care in Russia: current state and challenges. Sotsial’naia Biologiia i Sotsial’naia Praktika. 2019; (3): 109–119. (In Russ.). https://doi.org/10.24412/2411-0054-2-019-3-109-119

28. Cheng B.T., Rost M., De Clercq E., Arnold L., Elger B.S., Wangmo T. Palliative care initiation in pediatric oncology patients: A systematic review. Cancer Med. 2019; 8 (1): 3–12. https://doi.org/10.1002/cam4.1907

29. Wentlandt K., Krzyzanowska M.K., Swami N., Rodin G., Le L.W., Sung L. et al. Referral practices of pediatric oncologists to specialized palliative care. Support Care Cancer. 2014; 22 (9): 2315–2322. https://doi.org/10.1007/s00520-014-2203-6