Pediatric Palliative Care: Insights into Assessment Tools and Review Instruments

Abstract

The proper assessment of needs and outcomes in pediatric palliative care (PPC) is imperativeto ensure the best possible service to patients and families. However, given the multidimensionalnature of PPC, the low number of patients in this setting, the heterogeneity of diseases, the presenceof cognitive impairment in many patients, and the physiological development of children, outcomescan be complex and difficult to measure. Consequently, in this context, the use of standardizedand validated tools to assess the needs of children and families, to assess symptom severity, andto estimate the quality of PPC service represent a current need. Even if efforts have been made tostandardize approaches and tools for palliative care in adults, to our knowledge, a similar comprehensiveassessment of PPC has not yet been conducted to date. This narrative review provides anoverview and discusses the evaluation of tools currently applied in PPC, with an educational intentfor healthcare providers. We found that several instruments are available to assess different dimensionsof PPC. We proposed a classification into eligibility tools, patient and family needs assessmenttools, and care assessment tools. At present, two main eligibility tools exist, the PaPaS Scale and theACCAPED Scale questionnaire. Most of the tools for patient and family needs assessment have notbeen specifically validated in the PPC setting, and many may be more readily applied in researchsettings rather than in daily practice. Similar considerations can be made for tools assessing QoL,while tools assessing PPC service quality seem to be easily applied. Efforts to develop new specifictools and validate existing ones are undoubtedly advocated. However, in the patient’s best interest,PPC healthcare providers should start using available tools, regardless of their validation status.

Assessment of Parental Needs and Quality of Life in Children with a Rare Neuromuscular Disease (Pompe Disease): A Quantitative–Qualitative Study

“…At the individual professional level, multiprofessional team structures cater to the specific needs of pediatric patients and their families, encompassing hospital, hospice, and home-based treatments. These initiatives include educational sessions tailored to both staff and family members; see [44][45][46][47]. Hence, expanding these PPC methodologies, with a targeted focus on identified needs, represents a unique approach to bolstering social support.…”

The specialized pediatric palliative care service in Italy: how is it working? Results of the nationwide PalliPed study

“…Given the extension and complexity of patients requiring specialized PPC, a multidisciplinary network of PPC specialists must be established to address the family needs and make use of available community resources, with the widest possible diffusion on the national territory and a 24/7-hour service [ 6 ]. Consequently, evaluation of specialized PPC service quality is imperative for a better organization, which in turn translates into improved outcomes for patients and families [ 7 ]. This urgency is further strengthened by the Italian Law 38/2010, which claims a specialized response to the needs of children on PPC and their families, both clinically and organizationally, through the implementation of a network of PPC-specific services, acting regionally under the coordination of a single referral center [ 8 ].…”