Palliative care is a crucial aspect of healthcare, dedicated to improving the quality of life for patients and their families facing serious illnesses. It focuses on relieving suffering caused by symptoms and stress, rather than solely aiming for a cure.1 For decades, experts have defined key domains in palliative care that need to be addressed comprehensively (as outlined in the Text Box below). Effective palliative care relies heavily on accurately assessing patient and caregiver needs, often through direct reports. This is where palliative care assessment tools become indispensable, providing structured methods to gather vital information about symptoms, quality of life, and the overall impact of care.3 Now, in the digital age, the concept of a Palliative Care Tools App is emerging as a powerful means to enhance accessibility and effectiveness in this critical field.
These assessment tools cover a wide spectrum, from physical symptoms like pain and breathing difficulties to mental health concerns like depression, caregiver well-being, and the processes of care itself, such as communication and care coordination.2 To truly gauge the success of palliative care interventions, we need reliable and user-friendly tools that resonate with patients and families,4 effectively measure intervention outcomes, and are practical for diverse palliative care settings and populations.5 The rise of palliative care tools apps represents a significant step towards meeting these needs, offering a convenient and potentially more impactful way to integrate assessment into routine care.
National Consensus Guidelines Domains for Quality Palliative Care
- Structure/Process of care (e.g., continuity, communication)
- Physical Aspects of Care (e.g., pain, dyspnea)
- Psychological and Psychiatric Aspects of Care
- Social Aspects of Care (including caregiving)
- Spiritual, Religious and Existential Aspects of Care
- Cultural Aspects of Care (including cultural competence)
- Care of the Patient at the End of Life
- Ethical and Legal Aspects of Care (care planning)
For years, researchers have compiled and reviewed palliative care assessment tools. Early efforts, like the TIME Toolkit in the 1990s,6 and subsequent systematic reviews,7 aimed to categorize and evaluate existing instruments. The PEACE project further refined this work, focusing on tools suitable for quality indicators in palliative and hospice care.11 However, since the PEACE project, there hasn’t been a similarly broad review, despite the continuous development of new tools and the increasing recognition of the diverse domains within palliative care. More recent reviews have focused on specific areas like breathing difficulties,12 pain,3 comprehensive assessments,13 satisfaction,14 caregiver instruments,15 and spiritual support.16 Given the interconnectedness of these areas, a modern, integrated overview is crucial for the palliative care field. This is where the idea of a comprehensive palliative care tools app becomes compelling – a centralized digital resource that could potentially integrate multiple assessment domains.
Assessment tools serve various purposes in palliative care. Clinically, they can aid providers in directly evaluating patient and family needs. For example, symptom assessment tools can provide real-time feedback to the care team about a patient’s pain levels. However, evidence on the effectiveness of simply providing assessment data to clinicians is varied. A 2012 review on quality improvement in palliative care17 found limited high-quality studies demonstrating significant improvements in patient outcomes solely from using tools to inform providers. While some studies showed positive effects on communication, the impact on overall quality of life was less consistent. This suggests that the value of assessment tools may be maximized when integrated into a broader, more interactive system, such as a palliative care tools app that not only collects data but also facilitates tailored interventions and support.
Another key application is using assessment data as quality indicators to evaluate care delivery. Several reviews have explored tools suitable for this purpose.18,19 Furthermore, assessment tools are vital in research to measure the impact of palliative care interventions. A 2015 review of palliative care intervention studies20 highlighted that while interventions often improved communication, care planning, and psychosocial well-being, only half of the trials showed statistically significant positive outcomes. This may be partly due to the lack of sensitive and relevant assessment tools that truly capture the nuances of palliative care interventions. The review also pointed out the difficulty in comparing results across studies due to the wide variety of tools used. Standardized and responsive tools, potentially delivered through a palliative care tools app, could significantly improve research quality and comparability in the future.
To address the need for a comprehensive understanding of palliative care assessment tools, we draw upon established palliative care frameworks, prior research,9,17,20 and recent reviews to analyze the current state of research. We aim to examine the use of these tools across three key areas: (i) clinical practice, (ii) quality indicators, and (iii) intervention evaluation. By identifying key challenges and opportunities, we hope to contribute to the advancement of palliative care assessment, particularly in the context of emerging digital solutions like palliative care tools apps.
Guiding Questions for Palliative Care Assessment Tools
These guiding questions are relevant to all three applications of palliative care assessment tools – clinical practice, quality indicators, and intervention evaluation – and will be discussed within the framework of the eight domains from the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care (see Text Box), as well as a ninth domain encompassing tools that span multiple areas, such as patient experience and comprehensive assessment.
- What palliative care assessment tools have been developed and utilized?
- For what specific settings, patient populations, and intended purposes were these tools designed?
- What are the essential characteristics of these tools, including the domains they address, the types of outcomes they measure, and their mode of administration?
- In what contexts have these assessment tools been implemented?
- In which settings and patient populations have they been applied?
- How have they been practically used in these contexts?
- What is the current state of research concerning these palliative care assessment tools?
- Is there published evidence available regarding their reliability, validity, responsiveness, and usability?
- What are the main challenges associated with the use of palliative care assessment tools?
- What are the general strengths and weaknesses of currently available tools, such as standardization, burden on patients and caregivers, and potential unintended consequences?
- What are the critical gaps in tool development and evaluation, and what opportunities exist for future research in this area, especially concerning digital tools like a palliative care tools app?
- How have these weaknesses and gaps impacted the field of palliative care, and how might digital solutions offer improvements?
Methods for Reviewing Palliative Care Assessment Tools
1. Data Collection on Palliative Care Tools
For each domain defined by the National Consensus Project Clinical Practice Guidelines for Palliative Care, as well as for cross-domain areas, we will gather information on palliative care assessment tools through systematic reviews. If a systematic review is not available for a particular domain, we will initially search for information in grey literature (unpublished compilations or databases of tool information). If needed, we will then conduct a targeted search of PubMed.
A. Systematic Review Search
Palliative care has a rich landscape of recent systematic review literature, including numerous publications from 2015 onwards, along with up-to-date grey literature compendia and databases. Given that newly developed tools without widespread use are less relevant to our guiding questions, and that validity and reliability data are typically found in original tool publications, our focus will be on identifying and mapping existing reviews covering the National Consensus Project Clinical Practice Guidelines for Palliative Care domains. We will primarily search Cochrane, PubMed, and CINAHL, with targeted searches in PsycINFO and PsycTESTS as needed, mirroring the approach of previous reviews.14 Following Evidence-based Practice Center guidelines for utilizing existing systematic reviews,21 we will assess the quality of relevant systematic reviews from the past 10 years using the ROBIS tool.22 The 10-year timeframe is chosen because the PEACE systematic review concluded in 2007. Based on our quality assessment, relevance, recency, and the availability of evidence tables with pertinent data, we will select systematic reviews and categorize them by the domains they cover (Figure 1). We will then extract details about the assessment tools discussed in these reviews, paying particular attention to any mention of digital formats or palliative care tools apps.
Search Strategy Example (PubMed, limited to systematic reviews and meta-analyses, 2/2007 to present): 300 results
((“palliative care”[mh] OR “palliative care”[tiab] OR “end of life”[tiab] OR “hospice care”[mh] OR “terminally ill”[tiab] OR “terminal care”[tiab] OR “terminal illness”[tiab] OR Hospice[tiab]) AND (“assessment tool”[tiab] OR “assessment tools”[tiab] OR “Surveys and questionnaires”[Mesh] OR “Questionnaires”[tiab] OR “Questionnaire”[tiab] OR “self report”[tiab] OR instrument[tiab] OR instruments[tiab] OR scale[tiab] OR scales[tiab] OR instrumentation[tiab] OR “Psychometrics”[Mesh] OR “Psychometrics”[tiab] OR “Psychometric”[tiab]))
B. Grey Literature Search
For National Consensus Project Clinical Practice Guidelines for Palliative Care domains lacking recent (within the last 3 years) systematic reviews, we will employ targeted grey literature searching (as outlined in Figure 1) to identify websites and resources that compile information on assessment tools. This grey literature search will be limited to curated lists and databases that provide information from published studies regarding tool components, validity, reliability, and/or usability. We will prioritize websites that have compiled and evaluated tools and have been recently created or updated (within the last 5 years). Examples include the University of Washington End-of-Life Care Research Program Instruments site,23 the City of Hope Pain & Palliative Care Resource Center,24 the Measurement and Caregiver Cores of the Palliative Care Research Cooperative Group,25 the National Palliative Care Research Center Measurement and Evaluation Tools25 and the Functional Assessment of Chronic Illness Therapy (FACIT) system.26 Additionally, we will explore databases that abstract information on assessment tools, such as the National Institutes of Health Patient Reported Outcomes Measurement Information System (PROMIS) instruments,27 the Mapi Research Trust’s Patient Reported Outcome and Quality of Life (PROQOLID) database, and the National Cancer Institute Grid-Enabled Measures database.28 Inclusion criteria for tools are detailed in Table 1. We will specifically look for mentions of digital tools and palliative care tools apps within these grey literature sources.
Figure 1. Search flow based on National Consensus Project Clinical Practice Guidelines for Palliative Care domains for tools
C. Supplemental Search of Primary Literature
If, after the systematic review and grey literature searches, any National Consensus Project Clinical Practice Guidelines for Palliative Care domains remain uncovered, we will perform a targeted PubMed search to identify tools within these domains. This search will use keywords relevant to those domains, combined with our core palliative care search terms from Section A. We will apply the same inclusion criteria as for systematic reviews (Table 1), but will only include published articles describing the psychometric properties of assessment tools developed for or tested in palliative care populations. Given that the last comprehensive systematic review of assessment tools across domains searched up to February 2007, we will start our search from February 2006 onwards to ensure overlap with prior reviews and capture more recent developments, including the emergence of digital tools and palliative care tools apps.
D. Key Informant Discussions
To complement the information gathered from published and grey literature, we will conduct interviews with key informants. These interviews will focus on perspectives and insights not readily available in existing sources. We will explore what essential components these tools should possess, their optimal functionalities, and relevant sources of information. We will then compare this input with the current research landscape to pinpoint gaps and future research directions. Interviews will be conducted in small groups, with a separate session for caregiver advocates to maximize their valuable input. Adhering to Office of Management and Budget guidelines, we will limit the number of informants asked identical questions to no more than 9. We will document all interviews and provide summaries to the Task Order Officer. Key informants will include leading palliative care researchers and quality experts with experience applying tools in diverse settings and populations, such as intensive care units, oncology, pediatrics, heart failure, geriatrics, and bereavement. These experts possess extensive knowledge in various facets of tool development, application, and evaluation, ranging from patient- and caregiver-reported outcomes to quality indicators and patient experience, and will offer valuable insights into the potential and challenges of palliative care tools apps.
Discussions with key informants will cover palliative care across various domains, settings, and populations. For researchers and providers, interviews will concentrate on identifying key issues and research gaps in the application of assessment tools for clinical care, quality indicators, and intervention evaluation within palliative care. For caregiver advocates, interviews will focus on their perspectives regarding:
- Essential elements of high-quality palliative care.
- Experiences with assessment tools or surveys, including symptom ratings or questionnaires about their palliative care experiences.
- Information about palliative care patients and caregivers that providers need to know, which could be gathered through questionnaires or other assessment tools, potentially within a palliative care tools app.
- Domains from the National Consensus Project that are most critical to measure as part of palliative care.
- Experiences with questionnaires or other assessment tools, and whether these tools improved their care experience or presented additional burdens, and how digital tools might alter this experience.
Table 1. Inclusion Criteria
| Category | Criteria |
|---|---|
| Content | Evaluates palliative care assessment tools used in palliative care (1) clinical practice, (2) quality indicators, (3) evaluation of interventions |
| Population | Tools developed, evaluated, or implemented in populations defined as palliative care or meeting the definition of palliative care (see definition below); All diseases, age groups, and settings |
| Study design | Systematic reviews; For interventions, include systematic reviews of prospective, controlled trials |
| Language/ Country | English/ United States |
| Admissible evidence | Published literature only for reliability, validity, and responsiveness |
2. Data Organization and Presentation for Palliative Care Tools
A. Information Management for Palliative Care Tools
We will extract data on tools published since the comprehensive systematic reviews conducted for the National Institutes of Health State of the Science and PEACE projects.9,11,12,29 Data extraction will be guided by key elements from the National Quality Forum criteria for Patient Reported Outcomes in Performance Measurement,30 developed by a large expert panel. These criteria emphasize scientific acceptability (validity, reliability, and responsiveness to interventions) and usability (evidence of tool use, feasibility, and provision of useful information for palliative care clinical practice, quality indicators, or intervention evaluation). From literature searches and key informant interviews, we will assess key issues and research gaps related to the application of assessment tools in each of the three areas of focus. We will also specifically track information related to digital formats and the development and use of palliative care tools apps.
B. Data Presentation of Palliative Care Tools
Our findings will be presented as an evidence map (format to be determined) structured around the guiding questions. The presentation will be organized into tables categorized by the National Consensus Project Clinical Practice Guidelines for Palliative Care domains, addressing the three applications of tools (clinical care, quality indicators, and intervention evaluation), settings, and populations. We will create a catalog of included tools, detailing their characteristics (Guiding Question 1), the contexts in which they are used (Guiding Question 2), and the current state of research for each tool area (Guiding Question 3). A summary of relevant issues and gaps will be provided to address Guiding Question 4, with a particular emphasis on the role and future potential of palliative care tools apps in overcoming these challenges and gaps.
References
Definition of Terms in Palliative Care
Palliative care: Healthcare focused on providing relief from pain and other symptoms, enhancing quality of life, and supporting patients and families facing serious advanced illness.1
Assessment tool (or instrument) (or measurement tool): A method, completed by or with patients or families, used to gather data at the individual patient level. Examples include tools evaluating patient symptoms like pain, care quality (e.g., follow-up questions on pain control), or care experience (e.g., caregiver assessments of provider communication).3 In the context of this discussion, this definition extends to digital tools and palliative care tools apps.
Quality indicator: A population-based metric that allows users to quantify the quality of a specific aspect of care by comparing it against evidence-based standards.31 Indicators require defining both the patients whose care meets criteria (numerator, e.g., those asked about pain) and the eligible population (denominator, e.g., all patients with serious illness). Patient- or caregiver-reported data for quality indicators often rely on assessment tools, potentially delivered through a palliative care tools app.
National Consensus Project Clinical Practice Guidelines for Quality Palliative Care domains2
- Structure/Process of care (e.g., continuity, communication)
- Physical Aspects of Care (e.g., pain, dyspnea)
- Psychological and Psychiatric Aspects of Care
- Social Aspects of Care (including caregiving)
- Spiritual, Religious and Existential Aspects of Care
- Cultural Aspects of Care (including cultural competence)
- Care of the Patient at the End of Life
- Ethical and Legal Aspects of Care (care planning)
- Tools that cross domains: (patient experience/satisfaction, comprehensive assessment)
Summary of Protocol Amendments
Any protocol amendments will be documented with the date of each change, a description of the amendment, and the rationale behind it.
Key Informants in Palliative Care Research
Key Informants in this technical brief process serve as valuable resources, providing insights into the clinical context of palliative care technologies and interventions. They offer expertise on how these tools function, their current and potential applications, and key considerations from patient and policy perspectives. Key Informants may include clinical experts, patients, manufacturers, researchers, payers, and other relevant viewpoints. Diverse perspectives are expected, and all information is validated against available literature and input from other Key Informants. Information from Key Informant interviews is clearly identified in the report. Key Informants do not perform analysis or contribute to report writing, and they do not review the report beyond the public review process.
Key Informants are required to disclose any financial conflicts of interest exceeding $10,000 and any other relevant business or professional conflicts. Due to their specialized expertise, individuals with potential conflicts may still be invited to participate. The Task Order Officer and the EPC work to manage and mitigate any identified conflicts of interest.
Peer Reviewers of Palliative Care Research
Peer reviewers are invited to provide written feedback on draft reports, based on their clinical, content, or methodological expertise in palliative care. Peer review comments on preliminary drafts are considered by the EPC when preparing the final report. Peer reviewers are not involved in writing or editing the final report or other outputs. The synthesis of scientific literature in the final report does not necessarily reflect the views of individual reviewers. Responses to peer review comments are documented and published three months after the Evidence report is released.
Potential Peer Reviewers must disclose any financial conflicts of interest greater than $10,000 and any other relevant business or professional conflicts. Invited Peer Reviewers must not have financial conflicts of interest exceeding $10,000. Peer reviewers with potential business or professional conflicts may submit comments on draft reports through the public comment process.
EPC Team Disclosures
EPC core team members are required to disclose any financial conflicts of interest exceeding $1,000 and any other relevant business or professional conflicts. Related financial conflicts of interest totaling over $1,000 typically disqualify EPC core team investigators.
Role of the Funder
This project was funded under Contract No. HHSA 290-2015-00006-I from the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services. The Task Order Officer oversaw contract deliverables for adherence to contract requirements and quality standards. The authors are responsible for the content of this report. Statements within the report should not be interpreted as endorsements by the Agency for Healthcare Research and Quality or the U.S. Department of Health and Human Services.
