Context: Assessment tools serve as crucial data collection instruments, utilized by or with patients or caregivers to gather individual-level data.
Objectives: This study aimed to 1) provide a summary of palliative care assessment tools completed by or in conjunction with patients or caregivers, and 2) pinpoint areas requiring further tool development and evaluation.
Methods: Our methodology included 1) a systematic review of existing systematic reviews; 2) supplementary searches of prior reviews and websites; and 3) targeted searches for primary articles when specific domain tools were lacking. Pairs of researchers reviewed search outcomes, evaluated bias risks, and extracted relevant data. We categorized tools based on domains outlined in the National Consensus Project Clinical Practice Guidelines for Palliative Care, selecting the most pertinent, recent, and highest-quality systematic review for each domain.
Results: Our analysis incorporated 10 systematic reviews, identifying a total of 152 tools (97 from systematic reviews and 55 from supplemental sources). Significant gaps were noted, including the absence of a systematic review for pain assessment and a limited number of tools addressing structural, cultural, spiritual, or ethical/legal domains, as well as patient-reported experiences at the end-of-life. While psychometric data was available for numerous tools, few studies assessed responsiveness (sensitivity to change), and no studies directly compared different tools.
Conclusion: There is a notable scarcity of assessment tools specifically designed for spiritual, ethical, or cultural domains, and for capturing patient-reported experiences during end-of-life care. Although psychometric properties have been documented for some existing tools, their responsiveness to change and comparative effectiveness remain unevaluated. Future research should prioritize the development and testing of tools that cover underrepresented domains, alongside evaluations of tool responsiveness and comparative analyses between different Assessment Tools For Palliative Care.
