1. Introduction
Pediatric palliative care (PPC) is defined by the World Health Organization as the active total care of a child’s body, mind, and spirit, also extending support to the family. Recognizing access to PPC as a fundamental right for eligible children and their families is crucial. PPC should be initiated upon diagnosis of an incurable or life-threatening illness, extending far beyond end-of-life care. As emphasized in worldwide standards for PPC, assessing the needs of both child and family and rigorously monitoring the quality of PPC services are essential for continuous improvement based on objective data. The use of standardized and validated Palliative Care Assessment Tools is paramount in enhancing the quality and equity of care, providing robust evidence within the PPC domain.
Despite the undeniable need for PPC, concrete evidence regarding the quality and outcomes of provided care remains limited. To address this, employing standardized and, where possible, validated palliative care assessment tools, adapted for specific languages and cultures, is essential. These tools are vital for assessing the diverse needs of children and families throughout the disease trajectory, evaluating symptom severity, and estimating PPC service quality.
While significant efforts have been directed towards standardizing approaches and assessment tools for palliative care in adults, a similarly comprehensive assessment framework for PPC has yet to be established. This gap is particularly pronounced due to the multidimensional nature of PPC, which makes outcomes complex and challenging to measure. Further complicating assessment are factors intrinsic to pediatric care, such as the relatively small patient population, the wide variety of diseases encountered, the prevalence of cognitive impairment, and the ongoing physiological development of children.
To advocate for and facilitate the use of available palliative care assessment tools, this review aims to provide healthcare providers (HCPs) with a detailed overview and evaluation of tools currently used in PPC. With an educational focus, this article also proposes a practical classification of these tools to enhance understanding and application in clinical settings.
2. Methodology
This narrative review was developed by a team comprising two clinicians (AM, FB) with extensive expertise in PPC and two researchers (SP, LG) experienced in this field. The project aimed to deliver a comprehensive overview of palliative care assessment tools currently applied in PPC, specifically tailored for HCPs.
To achieve this, the authors conducted multiple, interconnected searches in PubMed, without restrictions on publication date or language. Search terms included various combinations of relevant keywords such as “PPC and outcome measurement,” “PPC and evaluation tools,” “PPC and needs assessment,” and “PPC and quality of care.” Additionally, relevant documents from the authors’ personal collections were considered. Papers were selected based on their relevance to the topic, as unanimously agreed upon by the authors. Any discrepancies in paper selection were resolved through internal discussions. The literature search was last updated in June 2023.
For clarity and ease of use, the identified palliative care assessment tools were categorized based on their focus and application areas. Given the heterogeneity of available tools and the educational purpose of this review, a formal evaluation of tool quality using standardized methodologies (e.g., COSMIN approach) was not undertaken.
3. Classification of Palliative Care Assessment Tools
Based on our literature review, we propose a classification system for palliative care assessment tools in PPC, detailed in Table 1. This classification is designed to enhance understanding and facilitate the practical application of these tools in clinical settings. The tools are categorized mainly for educational purposes to guide HCPs in selecting appropriate instruments for different aspects of PPC.
Table 1. Classification of Assessment Tools in Pediatric Palliative Care
| Type of Tools | General Characteristics
