Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)

Abstract

Background: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore. Methods: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment.Results: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed. Conclusion:The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.

Paediatric palliative screening scale as a useful tool for clinicians’ assessment of palliative care needs of pediatric patients: a retrospective cohort study

“…In an earlier study that used this tool, Chong et al reported the utility and feasibility of the PaPaS as a tool for screening admissions or determining the continuation of PPC after 1 year of home-based PPC service. This study demonstrated the transparency and reliability of the PaPaS through its objective and standardized scoring system, and suggested that widespread adoption of the PaPaS may minimize the gaps in communication, continuity of care, and collaboration across settings [ 7 ]. However, both the original author of the PaPaS and Chong’s studies were based on the PaPaS assessed by PPC specialists.…”

“…However, both the original author of the PaPaS and Chong’s studies were based on the PaPaS assessed by PPC specialists. The consistency of PaPaS assessment by primary care clinicians who are not familiar with PPC with the PPC team’s assessments has not been evaluated, considering that they may have considerably different perspectives and levels of understanding about PPC [ 7 , 13 , 14 ]. Therefore, we compared the palliative care needs assessed by primary clinical and PPC teams to evaluate the agreement between them.…”

“…Although children's suffering was not fully recognized for a long time, and the concept of holistic suffering in pediatric patients appeared later than in adults, there has been remarkable progress in pediatric palliative care (PPC) in the past decades due to the efforts of dedicated professionals [2,3]. However, some barriers still hinder PPC development in several countries and various medical settings [4][5][6][7]. Previous studies have indicated that a significant gap exists between the needs of children and their families and the services they receive; one of the main underlying reasons for this is an insufficient understanding of PPC by physicians [8][9][10][11].…”

“…Thus, they developed a tool for screening patients called the Paediatric Palliative Screening Scale (PaPaS) which aimed to support health care professionals in accurately identifying children with palliative care needs. Previous validation of the tool showed promising results, and additional studies on the PaPaS have been reported [7,[13][14][15]. However, there are few studies on the clinical application and usefulness of the PaPaS in various settings.…”

Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life‐limiting conditions

“…4,[8][9][10] The most common strategy for early integration is through the adoption of one or more 'triggers', such as those in the Paediatric Palliative Screening Scale (PaPaS). 21 Many literature sources highlight the importance of improving access by providing paediatric palliative care in various settings, 22 and key policymaking organisations recommend this. 4,[8][9][10] This includes providing access to respite care, to ensure families have opportunities to manage the needs of their child with a life-limiting condition alongside the needs of other family members.…”