The increasing recognition of palliative care’s importance in managing chronic conditions, particularly heart failure, has spurred the development and evaluation of various needs assessment tools. These tools are crucial for healthcare professionals to identify patients who would benefit from palliative care, enabling timely and appropriate interventions. This article delves into the development, features, and clinical applications of several key palliative care needs assessment tools, with a specific focus on their use in heart failure populations. By examining their evolution and effectiveness, we aim to provide a comprehensive understanding of these instruments and their role in enhancing patient care.
Identifying Palliative Care Needs Assessment Tools for Heart Failure
Effective identification of patients with heart failure who require palliative care is paramount for delivering holistic and patient-centered care. Several tools have emerged, designed to aid healthcare professionals in this crucial task. This review examines six prominent palliative care needs assessment and measurement tools that meet specific inclusion criteria: the Gold Standards Framework Prognostic Indicator Guide (GSF-PIG), the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT:PD-HF), the Palliative care Outcome Scale (IPOS), the RADboud indicators for PAlliative Care Needs (RADPAC), the Supportive and Palliative Care Indicators Tool (SPICT), and the NECesidades PAliativas en enfermos Cronicos (NECPAL) questionnaire. These tools have been rigorously studied and applied in diverse healthcare settings, offering valuable insights into their utility in identifying and addressing the palliative care needs of heart failure patients.
Content and Contextual Comparison of Palliative Care Tools
To understand the nuances of each tool, it is essential to compare their content and intended context of use. Table 3 provides a detailed comparison of the main features of these tools. Notably, all tools, except RADPAC, were developed based on pre-existing instruments, indicating an iterative development of palliative care needs assessment tool evolution. RADPAC uniquely derived its indicators directly from a comprehensive literature review focused on identifying palliative care needs. The interconnectedness in the development of palliative care needs assessment tool is evident as some tools share origins, explaining their inherent similarities.
Included Items in Needs Assessment
The tools vary significantly in the items they include to identify patients with palliative care needs. GSF-PIG and NECPAL uniquely incorporate the “surprise question” (“would you be surprised if the patient dies in the next year?“) as an initial screening step. This question serves as a broad filter, followed by more specific general and disease-related indicators of health decline. SPICT omits the surprise question but utilizes a combination of general and disease-specific indicators. In contrast, RADPAC focuses solely on disease-specific indicators. Importantly, all these tools feature indicators tailored for heart failure or heart disease, recognizing the unique trajectory of this condition within the broader spectrum of palliative care needs.
IPOS and NAT:PD-HF diverge from the indicator-based approach. They do not include patient identification indicators. Instead, their development of palliative care needs assessment tool emphasized direct evaluation of patient needs. IPOS uses open-ended questions about patients’ primary concerns and symptoms alongside closed-ended questions, rated on a Likert scale, to assess patient and caregiver needs, culminating in a total score reflecting overall needs. NAT:PD-HF is structured into four sections assessing patient and caregiver needs: priority referral, patient wellbeing, caregiver/family ability to care, and caregiver wellbeing. Needs in the latter three sections are categorized by significance (none, some/potential, significant), with suggested actions ranging from direct management to referrals, guiding healthcare responses.
Clinical Settings for Tool Application
NAT:PD-HF stands out as the only tool specifically developed and tailored for patients with heart failure. This specificity reflects a crucial step in the development of palliative care needs assessment tool for particular conditions. The other tools are designed for broader application across multiple diseases. RADPAC’s development was specifically for primary care settings, acknowledging the importance of early identification in general practice. While RADPAC is primary care focused, the remaining tools exhibit versatility, suitable for various healthcare settings, enhancing their applicability across diverse patient care environments.
Completion Method and Professional Judgement
With the exception of IPOS, which offers both staff and patient completion versions, all tools are designed for completion by healthcare professionals, incorporating input from patients or caregivers. This highlights the crucial role of professional assessment in the development of palliative care needs assessment tool implementation. A common thread among all tools is the inclusion of subjective elements. Healthcare professionals must exercise clinical judgment to assess symptom severity or health decline, while patient and caregiver input is vital for symptom reporting and needs articulation. GSF-PIG, RADPAC, SPICT, and NECPAL further require data from patient medical records, such as hospitalization frequency and weight changes, integrating objective medical data into the assessment process.
Tool Length and Practicality
The length of each tool, indicative of its practicality in busy clinical settings, varies considerably. RADPAC is the briefest, with only seven items, while NAT:PD-HF is the longest, comprising 20 items. IPOS and NAT:PD-HF, despite their lengthier nature, offer a more in-depth evaluation of patient needs. Studies indicate that SPICT and NECPAL can be completed in under 8 minutes, enhancing their feasibility in time-constrained environments. The patient version of IPOS takes approximately 8 minutes, with the staff version requiring just 2–5 minutes. NAT:PD-HF typically takes 5–10 minutes, although a Dutch translation study reported an average completion time of 26 minutes by untrained heart failure nurses, suggesting training and cultural adaptation can influence tool administration time.
Need Domains Addressed by the Tools
NAT:PD-HF excels in its breadth, covering more palliative care needs domains than any other tool. It comprehensively addresses the key domains advocated by the World Health Organization (WHO): physical, psychological, social, and spiritual. Uniquely, NAT:PD-HF includes items about medication and treatment regimen management, an often-overlooked aspect of patient burden. IPOS also offers comprehensive coverage, encompassing most need domains found in NAT:PD-HF. NECPAL omits spiritual issues, while GSF-PIG, RADPAC, and SPICT primarily focus on patients’ physical symptoms, representing different priorities in their development of palliative care needs assessment tool.
In summary, NAT:PD-HF and IPOS stand out for their comprehensive content and versatile application. Both are suitable for diverse clinical settings, manageable in terms of completion time, and offer thorough assessments of patient and caregiver needs across multiple palliative care domains. IPOS offers the advantage of a patient-completed version, reducing staff workload and incorporating patient-reported outcomes directly. Its open questions also allow patients to articulate their unique problems and symptoms beyond pre-defined categories. However, NAT:PD-HF uniquely addresses treatment complexity and provides corresponding action recommendations, offering a structured approach to needs-based care planning.
Development and Intended Use: Tool Origins and Purpose
None of the tools examined were initially developed specifically for heart failure. This highlights a gap in the initial development of palliative care needs assessment tool focusing on specific conditions. NAT:PD-HF is an exception, as it was adapted for heart failure from a similar tool designed for cancer patients, demonstrating a targeted development process. All other tools are generic, though they have been applied to heart failure populations. A heart failure-specific version of IPOS is under consideration but remains formally untested, indicating ongoing development efforts in this area.
All tools were developed in high-income countries, with half (IPOS, GSF-PIG, SPICT) originating from the UK, reflecting regional concentrations in palliative care research and tool development. Clinical expertise played a central role in the development of all tools, underscoring the importance of practitioner input in creating practical and relevant assessment instruments. Literature reviews informed the development of all tools except GSF-PIG, suggesting varying methodological approaches in their creation. Interestingly, all tools have original development publications, except GSF-PIG, indicating differences in the formal documentation of their origins and validation. GSF-PIG appears to be less rigorously documented in its development compared to the other tools.
GSF-PIG, RADPAC, SPICT, and NECPAL were primarily developed as patient identification tools, designed to screen and identify individuals requiring palliative care. This contrasts with IPOS and NAT:PD-HF, which were developed to offer a more comprehensive needs evaluation, going beyond simple identification to detailed assessment of palliative care needs. The patient identification tools serve primarily as clinical decision aids, guiding healthcare professionals during consultations to determine palliative care needs and prompt further holistic assessment. SPICT, for instance, is recommended for use alongside IPOS to gain a fuller understanding of patient needs, illustrating a tiered approach to assessment.
IPOS, in contrast, was developed as an outcome measure to quantify patient symptoms and concerns. It provides scores but does not offer direct guidance on addressing identified needs, necessitating supplementary clinical decision support tools for score interpretation and action planning. NAT:PD-HF is not an outcome measure; its primary function is as a clinical decision aid during consultations, categorizing the level of concern for each need and suggesting triage actions (direct management, team management, referral). Table 4 summarizes the main purpose and intended use of each tool, highlighting the diverse approaches in their development of palliative care needs assessment tool.
Psychometric and Practical Properties in Heart Failure Patients
In the general population, IPOS and SPICT demonstrate the strongest evidence for validity, reliability, and practicality. These tools have undergone extensive psychometric testing and practical application across diverse settings. NECPAL and RADPAC follow, with fewer but still significant validation studies. GSF-PIG lacks formal validation studies, placing it at a disadvantage in terms of evidence-based psychometric robustness.
However, psychometric and practical properties of these tools are sparsely assessed specifically within heart failure populations. Table 5 summarizes the available evidence using the Oxford Patient-Reported Outcome Measures Group criteria. Only NAT:PD-HF (Original NAT:PD-HF), its Dutch translation (Dutch NAT:PD-HF), IPOS (Original IPOS), and its German translation (German IPOS) have had their practicality tested in heart failure patients. Furthermore, only Original NAT:PD-HF and Dutch NAT:PD-HF have undergone some psychometric property testing in this specific population. This highlights a critical need for further research to validate these tools specifically for heart failure, ensuring their accuracy and effectiveness in this patient group.
Acceptability, Feasibility, Reliability, and Validity
Acceptability to patients has been evaluated only for Original NAT:PD-HF, Dutch NAT:PD-HF, Original IPOS, and German IPOS. While direct patient acceptability of NAT:PD-HF versions was not directly assessed, indirect measures like completion time and cultural applicability were considered. Overall, both IPOS versions and Original NAT:PD-HF showed acceptable levels, with IPOS having stronger evidence of patient acceptability. Dutch NAT:PD-HF, conversely, showed negative acceptability indicators, suggesting potential cultural or translation issues.
Feasibility for healthcare professionals was tested for Original NAT:PD-HF, Dutch NAT:PD-HF, and Original IPOS. Original IPOS and Original NAT:PD-HF were found to be feasible, meaning they are easy to use and quick to complete in clinical practice. Dutch NAT:PD-HF, again, demonstrated negative feasibility, possibly due to translation or complexity issues in its application.
Reliability, specifically inter-rater reliability, was assessed only for Original NAT:PD-HF. Results showed good agreement between raters for individual tool items, indicating consistency in application. Internal consistency and test-retest reliability, however, remain unexamined.
Validity testing, crucial for ensuring a tool measures what it intends to measure, was conducted only for Original NAT:PD-HF and Dutch NAT:PD-HF. Original NAT:PD-HF showed good face, content, and concurrent (construct) validity. Construct validity was demonstrated by correlating items in the NAT:PD-HF patient wellbeing section with corresponding items from the Heart Failure Needs Assessment Questionnaire (HFNAQ). Another study found a statistically significant relationship between significant concerns in the NAT:PD-HF patient wellbeing section and specialist palliative care needs. In contrast, Dutch NAT:PD-HF showed poor construct and criterion validity when correlated with measures like the Dutch Edmonton Symptom Assessment System (ESAS) and Australia-modified Karnofsky Performance Scale (AKPS). However, it is important to note that the Dutch NAT:PD-HF validity study was a pilot study, not primarily designed for rigorous psychometric validation. Responsiveness, the ability of a tool to detect changes over time, has not been evaluated for any of these tools.
In conclusion, Original NAT:PD-HF emerges as the most extensively tested and psychometrically robust tool specifically in heart failure populations. It is the only tool validated for this group and has evidence of reliability, feasibility for healthcare professionals, and acceptability to patients. While IPOS demonstrates stronger acceptability evidence, its psychometric properties in heart failure patients remain untested. The psychometrics and practicality of other tools have not been evaluated within this specific population, highlighting a significant gap in the evidence base.
Clinical Applications in Heart Failure: Identifying Patients and Needs
The clinical application of these tools in identifying heart failure patients with palliative care needs varies significantly. Supplemental Table 2 provides detailed characteristics of identification studies, and Supplemental Table 3 presents results of tool applications in heart failure populations.
Breadth of Application in Heart Failure
The number of identification studies varies across tools. GSF-PIG and NECPAL are the most frequently evaluated, each with four studies. SPICT and NAT:PD-HF follow with three studies each, IPOS with two, and RADPAC with only one. GSF-PIG has been assessed in the most countries (four), followed by NAT:PD-HF (three). NECPAL has been used in diverse healthcare settings, while IPOS, GSF-PIG, SPICT, and NAT:PD-HF have been evaluated in both inpatient and outpatient settings. NAT:PD-HF and NECPAL have screened the largest number of heart failure patients. Baseline data for screened patients are most comprehensively reported in NAT:PD-HF and IPOS studies. NAT:PD-HF stands out for its evaluation across different types and classes of heart failure, uniquely including patients with acute on chronic heart failure, although studies excluded patients lacking cognitive capacity or consent.
Use for Patient and Needs Identification
All tools, except RADPAC, have been used for both patient identification and needs evaluation. RADPAC’s primary application in studies was patient identification. When used for patient identification, GSF-PIG (in one study) and RADPAC were combined with more comprehensive needs assessment tools, suggesting a multi-tool approach for a complete palliative care assessment.
Identification Ability and Appropriateness
The proportion of heart failure patients identified for palliative care by each tool among those screened serves as an indicator of identification ability. However, calculating this proportion is often challenging due to missing or unclear data and the absence of a definitive “gold standard” definition of a palliative care patient. RADPAC-trained practitioners identified only 6% of heart failure patients in one randomized controlled trial. Interestingly, a year post-training, these practitioners identified no patients, while untrained practitioners identified more patients shortly after RADPAC administration, raising questions about long-term training effects and tool utility. SPICT also identified few heart failure patients, although one study showed a misleadingly high proportion due to a small sample size. GSF-PIG identified a high 86% of heart failure patients in one study, while NECPAL identified varying proportions across studies: 32%, 55%, and 91%. IPOS and NAT:PD-HF identified 56% and 26% of heart failure patients for specialist palliative care, respectively. In one study, NAT:PD-HF identified 100% of patients for palliative care, potentially indicating a highly sensitive but perhaps less specific tool in that context.
The baseline health characteristics of identified patients reflect the appropriateness of identification. Ideally, tools should identify patients with poorer health status. While not consistently reported, studies using IPOS, GSF-PIG, NAT:PD-HF, and NECPAL showed that identified patients often exhibited poorer baseline health, evidenced by lower scores on patient outcome measures, frequent hospitalizations, older age, and/or advanced New York Heart Association (NYHA) class III-IV. Conversely, patients with better baseline health (NYHA class I–II) reported fewer significant psychological, social, and spiritual concerns on NAT:PD-HF. Morbidity outcomes at follow-up were sparsely reported. One GSF-PIG study found no significant difference in hospitalizations within a year for identified patients, which was unexpected given their identified palliative needs.
Impact of Tool-Based Interventions
Three tools, IPOS, RADPAC, and Dutch NAT:PD-HF, were integrated into palliative care interventions where healthcare professionals received training on tool use for identification and subsequent needs-based actions. However, none of these interventions demonstrated a significant positive impact on heart failure patients or their caregivers. The IPOS-based intervention showed mild, often transient, improvements in quality of life, symptom burden, and depression, which often worsened at later follow-up. Similarly, the Dutch NAT:PD-HF intervention did not significantly improve symptom burden, physical functioning, care dependency, or caregiver burden, and patient health status even worsened. It also did not affect advance directive documentation or hospital/emergency room visits. It’s important to note that IPOS and Dutch NAT:PD-HF intervention studies were pilot/feasibility studies, not designed to definitively test effectiveness.
The RADPAC intervention, evaluated in a cluster randomized controlled trial, also showed no significant difference in primary (out-of-hours primary care contacts) or secondary (contacts with own primary care practitioner, hospitalizations, place of death) outcome measures between deceased patients of RADPAC-trained and untrained practitioners. Post hoc analysis revealed that identified patients in the trained group (only two with heart failure) had better secondary outcomes compared to all other patients, but the primary outcome remained unchanged.
Healthcare Professional and Patient Perspectives
Interviews following the IPOS, RADPAC, and Dutch NAT:PD-HF interventions explored healthcare professional and patient perspectives on tool use. Themes were generally positive for IPOS and RADPAC, and negative for Dutch NAT:PD-HF. A common positive theme was the tools’ ability to identify palliative needs (IPOS) and patients (RADPAC), although RADPAC users found heart failure patient identification challenging. Dutch NAT:PD-HF was not considered helpful for palliative care communication, while IPOS facilitated patient-nurse communication, although many patients perceived no clinical benefit. Patient perspectives were only collected for IPOS, while healthcare professionals were interviewed across all intervention studies.
In summary, NAT:PD-HF demonstrated strong performance in clinical applications for palliative patient and needs identification, although further validation is needed. It has been broadly applied in heart failure populations and effectively used for both identification types. NAT:PD-HF identified a high proportion of heart failure patients with palliative care needs, and these patients exhibited poorer baseline health, indicating appropriate targeting. While the original NAT:PD-HF was not interventionally tested, its Dutch translation, like IPOS and RADPAC, did not show significant positive patient/caregiver impact. However, unlike IPOS and RADPAC, Dutch NAT:PD-HF received negative feedback from healthcare professionals, who cited usability barriers.
This review underscores the ongoing development of palliative care needs assessment tool and their crucial role in improving care for heart failure patients. While tools like NAT:PD-HF show promise, continued research is essential to refine and validate these instruments, ensuring they effectively translate into improved patient outcomes and enhanced quality of life.
