DOI: https://dx.doi.org/10.18203/2349-3291.ijcp20220451
Published: 2022-02-23

Assessment of palliative care in chronic hematological conditions in children in a tertiary care hospital

Rakesh Sharma, Dipesh Kaushik, Pancham Kumar, Arvind Sood, Ambika Sood

Abstract


Background: The aim of palliative care is most certainly the improvement of quality of life of patients suffering from various haematological diseases like leukaemia, haemophilia, thalassemia owing to the importance of palliative care in ensuring quality end-of-life care, provision of palliative care has been identified as an international human right. The objective of this study was to asses palliative care in chronic haematological conditions using Paediatrics palliative screening scale (PaPaS).

Methods: 71 cases who fulfilled inclusion and exclusion criteria were included in the study for assessment of palliative care.  Then, the data was analysed using the Statistical Package for Social Sciences (SPSS) software (version 13) and descriptive and interferential statistics were used.

Results: In leukaemia patients the mean PaPaS score was reported to be 23.58 (SD: 7.43). Nineteen participants (61.29%) had a PaPaS score of >25 and 12 participants (38.71%) had PaPaS score of less than 25. In thalassemia patients the mean PaPaS score was reported to be 27.42 (SD: 6.54). Twenty participants (64.52%) had a PaPaS score of >25 and 11 participants or 35.48% had PaPaS score less than 25. In haemophilia patients the mean PaPaS score was reported to be 32.88 (SD: 4.94). Seven participants (87.5%) had a PaPaS score of >25 and only single participants or 12.5% had PaPaS score less than 25. In lymphoma patient the PaPaS score was 34.

Conclusions: Chronic hematological diseases have lot of unmet needs of palliative care and study calls for creation of hospice and palliative care facility in all hospitals to meet the unmet needs of palliative care.


Keywords


Palliative care, Hematological conditions, Children, PaPaS scale

Full Text:

PDF

References


Institute of Medicine (US) Committee on Palliative and End-of-Life Care for Children and Their Families. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. In: Field MJ, Behrman RE, eds. Washington, DC: National Academies Press; 2003.

WHO. WHO definition of palliative care, 2008. Available at: http://www.who.int/cancer/palliative/def. Accessed on 11 January 2022.

Up to Date. Pediatric palliative care, 2008. Available at: http://www.act.org.uk/content/view/77/127. Accessed on 11 January 2022.

Fraser J, Harris N, Berringer AJ, Prescott H, Finlay F. Advanced care planning in children with life-limiting conditions - the Wishes Document. Arch Dis Child. 2010;95(2):79-82.

Himelstein BP, Hilden JM, Boldt AM, Weissman D. Pediatric palliative care. N Engl J Med. 2004;350(17):1752-62.

Hain RD. Paediatric palliative medicine: a unique challenge. Pediatr Rehabil. 2004;7(2):79-84.

Moya JC, Morales M. Pediatric palliative care, Costa Rica's experience. Am J Hosp Palliat Care. 2010;27(7):456-64.

Monterosso L, Kristjanson LJ, Aoun S, Phillips MB. Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service. Palliat Med. 2007;21(8):689-96.

Bergstraesser E, Paul M, Rufibach K, Hain RD, Held L. The Paediatric Palliative Screening Scale: Further validity testing. Palliat Med. 2014;28(6):530-3.

Valizadeh L, Hosseini FA, Zamanzadeh V, Heidarnezhad F, Jasemi M, Lankarani KB. Practice of Iranian Adolescents with Hemophilia in Prevention of Complications of Hemophilia. Indian J Palliat Care. 2015;21(3):328-37.

Downing J, Powell RA, Marston J, Huwa C, Chandra L, Garchakova A, et al. Children's palliative care in low- and middle-income countries. Arch Dis Child. 2016;101(1):85-90.

Feudtner C, Rosenberg AR, Boss RD, Wiener L, Lyon ME, Hinds PS, et al. Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop. J Pain Symptom Manage. 2019;58(5):909-17.