Objectives: To (1) provide an overview of palliative care assessment tools designed to be completed by or with patients or caregivers, including which tools have been applied to clinical care, as quality indicators, or in evaluations of interventions, and (2) identify needs for future palliative care assessment tool development and evaluation.
Methods: First, we engaged Key Informants representing both patient/caregiver and provider/researcher perspectives to help guide the project. We then sought systematic reviews of palliative care assessment tools and applications of tools through searches of PubMed, CINAHL, Cochrane, PsycINFO and PsycTESTS from January 1, 2007 to August 29, 2016. We conducted supplemental searches of information on palliative care tools, including comprehensive reviews published prior to our date limitation, Web sites, and a targeted search for primary articles to identify tools where no recent high-quality systematic review was identified. We organized tools by the eight domains (subdomains) from the National Consensus Project Clinical Practice Guidelines for Palliative Care: structure and process, physical, psychological and psychiatric, social (caregiver), spiritual and religious, cultural, care at the end of life (bereavement), ethical and legal; as well as a ninth domain for multidimensional tools (quality of life and patient experience).
Results: We included 10 systematic reviews of palliative care assessment tools (7 addressing different domains and 3 addressing applications of tools). We identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included: no identified systematic review for the subdomain of pain and a paucity of tools to assess structure and process, cultural, ethical and legal domains, and patient-reported experience. Information on internal consistency, reliability, construct validity, and usability was available for many tools, but few studies evaluated responsiveness (sensitivity to change). Only six studies evaluated the use of assessment tools in clinical practice, and we identified only one quality indicator with a specified assessment tool. Twenty-three different palliative care assessment tools were used in 43 intervention studies.
Conclusions: We identified more than 150 assessment tools addressing most domains of palliative care, but few tools addressed the spiritual, structure and process, ethical and legal, or cultural domains, or the patient-reported experience subdomain. While some data on the psychometric properties of tools exist, the responsiveness of different tools to change has largely not been evaluated. Future research should focus on: (1) developing or testing tools in palliative care populations for domains with few or no tools, (2) evaluating responsiveness of tools for all domains, and (3) further studying the use of palliative care tools in clinical care and as quality indicators.