We identified 152 different palliative care assessment tools with varying psychometric properties reported across eight of the nine domains of palliative care (Figure 2). While some domains and subdomains (dyspnea; psychological and psychiatric; social; bereavement) had many assessment tools, other domains had few (spiritual, religious, and existential; ethical and legal) or no (cultural) tools. Few tools addressed usability (time to complete). Moreover, the burden associated with tools, as evaluated by the number of items in each tool, varied significantly by domain; for example, the mean number of items per tool identified in the systematic review was 24, but domain means varied between: seven items (Dyspnea), 13 items (psychological and psychiatric), 21 items (social), 22 items (spiritual, religious, and existential), 33 items (bereavement), 30 items (quality of life), and 47 items (patient experience). The key gaps by domain are:

Figure 2

Evidence map of percent of tools with psychometric properties reported in existing systematic reviews of palliative care assessment tools, organized by National Consensus Project for Quality Palliative Care domains and multidimensional domains. ^* No (more...)

• For the structure and process domain, we identified only two tools through our supplemental search, one on continuity and one on communication. Since our Key Informants identified communication as a key aspect of palliative care, this lack of tools suggests that this is an important area for future tool development.
• For the physical domain, we focused on the subdomains of dyspnea, pain, and fatigue. For dyspnea, only eight of the 26 tools had testing of responsiveness (sensitivity to change), which is needed to evaluate the impact of clinical or other interventions. We identified no systematic review that specifically compiled and compared pain assessment tools in palliative care populations. We identified a number of pain assessment tools in our supplemental search, but given the critical importance of this subdomain for palliative care, a detailed systematic review of the evaluation of the use of these tools in palliative care populations and their psychometric testing is needed. We identified seven tools assessing fatigue but no high quality recent systematic review.
• For the psychological and psychiatric domain, we identified eight tools in palliative care populations, but the scope of the review we found for this domain was limited to patients with cancer. We identified additional tools in our supplemental search that may be relevant. A systematic review to synthesize the properties and relevance of these tools would be useful.
• In the social domain, few of the eight tools were specifically developed for patients receiving palliative care and many potentially relevant tools described in the systematic review had not been tested in palliative care populations. Insufficient or incomplete information was available about the psychometric properties of these tools. Future research comparing these tools and exploring their responsiveness in palliative care populations is needed.
• The lack of tools assessing the spiritual, religious and existential domain is also a key gap, as noted by the Key Informants and confirmed by our search: we identified only two tools that focused on spirituality evaluated in palliative care populations. Further development of spirituality tools for palliative care and testing of existing tools in this population would be valuable.
• We found no assessment tools focusing on the cultural domain, and multidimensional tools also did not address this domain. This domain should be considered for future tool development. Future research is also needed to determine how this domain could be included in multidimensional tools.
• In the care at end of life - bereavement subdomain, many of the tools were developed in palliative care populations but the information on validity and responsiveness was sparse. Most tools were also long, with one tool having 91 component items. As emphasized by our Key Informants, short, easy-to-complete tools are important, especially for the bereaved informal caregivers who complete these tools; few simple, low-burden, yet meaningful assessment tools exist.
• For the ethical and legal domain, we identified only three tools in our supplemental search and there were only six multidimensional assessment tools that had items addressing this domain. Future research is needed to both conceptualize and develop specific tools; this could also involve the evaluation of pre-existing items in multidimensional tools.
• The Key Informants emphasized the importance of patient-reported experience (multidimensional domain); however, we found only two tools assessing patient-reported experience (the rest were for caregiver-reported experience).
• Across domains, we identified no high-quality systematic review that addressed palliative care assessment tools for use in pediatric populations.

In assessing the applications for which palliative care assessment tools are used, the systematic review evaluating use of assessment tools in clinical care found only six studies.²⁵ We did identify one assessment tool being used as a quality indicator²⁶ in the United States, although this assessment tool from the National Hospice and Palliative Care Organization is no longer in use and has been replaced by the Hospice Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey.¹⁷⁶ (Of note, this technical brief predates the new CMS Hospice Item Set (HIS) of quality indicators, which is being revised at the time of this report.¹⁷⁷) We identified 23 palliative care assessment tools that were used to evaluate interventions²⁷; however, none of these tools was used in more than six of the 43 palliative care intervention studies summarized in the systematic review. This lack of standardization may limit the ability to compare and synthesize evidence across studies of palliative care interventions.