Measuring the psychological symptoms of pediatric palliative care patients and their caregivers: a scoping review of available instruments.

BACKGROUND: Given the unique characteristics of patients, their diversity, and the complexity of clinical care, conditions suitable for pediatric palliative care (PPC) require a patient- and family-centered approach. In addition to assessing physical symptoms, tracking psychological symptoms during care is crucial, as they significantly affect the patient's and their family's experience and quality of life. The objective is to conduct a literature review to identify tools that measure psychological symptoms in PPC, including those for pediatric patients and their parents. This review will describe the content of these tools and present data on their validity and reliability. The ultimate aim is to develop and organize a psychological assessment framework that enables, first, a comprehensive evaluation of the psychological needs of children and parents at the time of PPC initiation, and second, ongoing monitoring throughout the entire care process. METHODS: A scoping review was performed following the method of Arksey and O'Malley (2005) and reported according to the PRISMA extension for the scope revision protocol. Research has been conducted on Ebsco PsycINFO and PubMed to identify articles in English and Italian published between 2014 and 2024. RESULTS: Thirty articles met our inclusion criteria, exploring various instruments, including patient self-report measures, parent proxy-report measures for the child, and parent self-report measures. Several studies used both child self-report and parent proxy-report versions of the same instrument. CONCLUSIONS: This scoping review identified various tools to assess psychological aspects like anxiety, depression, stress, and quality of life in PPC patients and their parents. It also includes instruments that measure closely related constructs. This integration broadens the understanding of which dimensions and tools can be incorporated into developing a psychological assessment in PPC. However, some factors need consideration: standardising tools for clinical use, establishing and applying uniform, validated assessment methods suitable for the PPC context; choosing and tailoring tools that match the child's age and cognitive abilities; and enhancing opportunities to gather patient-reported outcome measures (PROMs) from children and young people.