Assessment of disabled paediatric patients for accessing palliative care: validation of a new tool

Abstract

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.

Keywords

• Palliative care
• Paediatric
• Pediatric
• disabled
• disability