Assessment of disabled paediatric patients for accessing palliative care: validation of a new tool
DOI:
https://doi.org/10.54103/dn/17791Keywords:
Palliative care, Paediatric, Pediatric, disabled, disabilityAbstract
BACKGROUND: By reviewing the literature, no work has emerged about the presence of a Palliative Care Network dedicated to the Italian disabled pediatric population. however, there is an increase in the prevalence of children with ingrained illness and / or serious disabilities who are in need of such treatment. The difficulty in defining when a child becomes incurable persists. Along with the diagnosis of incurability, the other crucial factor is the extent of "care needs".
OBJECTIVES: the aim of the study is to build an assessment tool for defining access criteria to Pediatric Palliative Care for patients with advanced illness and / or severe disability. B
METHODS: an observational, prospective, multicenter study was conducted, by using the Clinical Assessment Tool (CAT) scale, which has been proposed by the paediatric hospice of Padua (Italy) without formal validation. We studied a non-randomized sample of 101 patients from five healthcare facilities in Northern Italy. We modified the CAT scale by adding items from other tools used in Palliative Care. The study was divided into two periods at a distance of one month, in order to assess the patients’ clinical evolution.
RESULTS: internal consistency of the CAT tool was good (alpha=0.83). Explorative factor analysis showed acceptable loadings on each item. Positive and negative predictive values were 0.97 and 0.98, respectively.
CONCLUSIONS: the scale is reliable in identifying individuals in need of Pediatric Palliative Care and seems a promising tool for assessing the needs for palliative care in children with ingrained illness and/or severe disability.
References
Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, et al. Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study. Pediatrics. 1 giugno 2011;127(6):1094–101.
IMPaCCT. Standards for paediatric palliative care in Europe. Journal of Palliative Care (EAPC). 2007;
Tuffrey-Wijne I, McLaughlin D, Curfs L, Dusart A, Hoenger C, McEnhill L, et al. Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care. Palliat Med. maggio 2016;30(5):446–55.
Read S. Palliative care for people with intellectual disabilities: Pitfalls and potential. Palliat Med. gennaio 2013;27(1):3–4.
Heslop P, Blair PS, Fleming P, Hoghton M, Marriott A, Russ L. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. The Lancet. marzo 2014;383(9920):889–95.
Wagemans A, van Schrojenstein Lantman-de Valk H, Proot I, Metsemakers J, Tuffrey-Wijne I, Curfs L. The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study: Factors affecting end-of-life decisions for people with ID. J Intellect Disabil Res. aprile 2013;57(4):380–9.
Tuffrey-Wijne I, Giatras N, Goulding L, Abraham E, Fenwick L, Edwards C, et al. Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study. Health Serv Deliv Res. dicembre 2013;1(13):1–224.
Tuffrey-Wijne I, Wicki M, Heslop P, McCarron M, Todd S, Oliver D, et al. Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique. BMC Palliat Care. dicembre 2016;15(1):36.
Hanson LC, Scheunemann LP, Zimmerman S, Rokoske FS, Schenck AP. The PEACE Project Review of Clinical Instruments for Hospice and Palliative Care. J Palliat Med. ottobre 2010;13(10):1253–60.
De Roo ML, Leemans K, Claessen SJJ, Cohen J, W. Pasman HR, Deliens L, et al. Quality Indicators for Palliative Care: Update of a Systematic Review. J Pain Symptom Manage. ottobre 2013;46(4):556–72.
Draper, P., Thompson, DR. The quality of life - A concept for research and practice. Nursing Times Research, 6(3), 648-657. 2011;
Northway R, Jenkins R. Quality of life as a concept for developing learning disability nursing practice? J Clin Nurs. gennaio 2003;12(1):57–66.
Ferrell BR. Oxford textbook of palliative nursing. 2015.
Kaye EC, Rubenstein J, Levine D, Baker JN, Dabbs D, Friebert SE. Pediatric palliative care in the community: Community Pediatric Palliative Care. CA Cancer J Clin. luglio 2015;65(4):315–33.
Di Bari A, Destrebeq A, Osnaghi F, Terzoni S. Traduzione e validazione in italiano della scala Revised FLACC per la valutazione del dolore nel bambino con grave ritardo mentale. Pain Nursing Magazine, 2013;
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2022 Eleonora Maria Migliavacca, Alessandra Di Bari
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Accepted 2022-07-08
Published 2022-07-29
