Abstract
Background
Serious illness communication (SIC) is central to person-centred care and is associated with improved patient and caregiver experiences, reduced suffering, and more goal-concordant care. Despite substantial investment in SIC training programs, there is limited evidence that these interventions improve real-world outcomes. A key barrier is the absence of a consolidated set of measures that assess effects of SIC, such as proximal, intermediate, and downstream health outcomes among patients and caregivers.
Objectives
To identify existing patient- and caregiver-reported measures relevant to SIC and map these to a communication outcomes framework to support evaluation of SIC interventions.
Design
An environmental scan was conducted over a 3-year period (July 2022–June 2025), supported by a national expert panel.
Methods
Multiple search strategies were used, including searching peer-reviewed literature, grey literature, conference proceedings, as well as citation tracking and expert elicitation. Identified measures were assessed for relevance to Kirkpatrick Level 4 ‘real-world’ (i.e., patient/caregiver) outcomes and mapped to the Street et al. framework. Key characteristics were extracted and summarized descriptively.
Results
47 measures were identified. Of these, 8 mapped to communication functions, 18 to proximal outcomes, 6 to intermediate outcomes, and 15 to health outcomes. Most measures (66%) were designed for patients, with fewer for caregivers (21%) or both groups (13%). The majority (85%) were published after 2000. Among those that reported internal consistency (36/47), most (88%) were acceptable (α ≥ 0.80). Measures mapped to communication functions primarily assessed overall patient/caregiver experiences. Measures mapped to proximal, intermediate, and health outcomes increasingly captured consequences of communication, evolving internal states, and downstream psychological or quality-of-life outcomes.
Conclusion
The measurement landscape for SIC is broad but fragmented, with few measures developed specifically for the SIC context and caregivers. Mapping existing measures provides a foundation for developing a coherent, SIC-specific core set of patient- and caregiver-reported outcomes.
Keywords
Background
Understanding and responding to the values and goals of patients in health care settings is the cornerstone of providing person-centred care. In the context of providing care to people living with a serious illness (i.e., a progressive and incurable condition), and supporting their caregivers (i.e., care partners including people close to the patient and involved in their circle of care, such as family and friends), this concept has been referred to as serious illness communication (SIC). 1 SIC is recognized as “a process that should start early with the patient and their family, ideally at the time of a patient’s diagnosis, and increase in frequency and breadth over time, especially when the patient’s prognosis is anticipated to be 12 months or less”. 2 SIC can be a fundamental part of providing an early palliative care approach, which has many benefits for patients and caregivers.3–5
Alongside SIC, a variety of communication frameworks and measures have been conceptualized to support clinicians in caring for people living with a serious illness, such as advanced care planning and goals of care discussions. 6 However, through the Preparing or Deciding model, SIC aims to simplify conceptual disparity across these frameworks by emphasizing that conversations with those living with a serious illness are focused on preparing people for worsening illness or making medical decisions, 7 and that these can be reached through measurable competencies. 8 Despite this, research indicates that health care providers rarely engage in effective SIC, often due to a perceived lack of skills, comfort, and confidence to engage in these discussions.9–13
When SIC is ineffective or not done, patients have poor illness understanding, are at risk for receiving care that is not aligned with their values and goals, and often have worse experiences and outcomes, such as more depression and anxiety.14–16 Ineffective communication also leads to greater distress and complicated grief among caregivers.17,18 For health care providers, ineffective communication is associated with burnout, less job satisfaction, and more patient complaints.19–23 In addition, ineffective SIC has system and resource implications, as accurate illness understanding is associated with fewer emergency department visits and hospital admissions, as well as less chemotherapy within months of death.24–26
Over the past two decades, dozens of educational interventions have been developed to improve health care providers SIC skills, with over $300 million spent for training in the US alone. 27 Examples include the Serious Illness Care Program and VitalTalk.28–30 A scoping review of SIC educational interventions in the past 15 years showed that programs aimed to teach a variety of skills such as responding to emotions, providing illness understanding, and exploring values and preferences over time, through a variety of means (e.g., single or multiple workshops delivered in-person and/or virtually, with each workshop spanning 1-3 days). 31
Additionally, this prior scoping review also explored evaluation of these interventions using the 4-level Kirkpatrick model, in which level 1 (Reaction) captures participants’ immediate responses to and engagement with a program; level 2 (Learning) identifies knowledge and skills gained; level 3 (Behavior) examines the degree to which participants apply these skills in practice; and level 4 (Results) reflects broader downstream effects, including changes in performance and impacts on patient-level outcomes. 32 Findings from the scoping review indicated that most existing studies on SIC training interventions do not focus on level 4 Kirkpatrick outcomes. 31 Notably, there is no conceptual framework or standardized list of measures that focuses on measurement of Kirkpatrick level 4 outcomes, hindering research in this context. As such, the purpose of this study is to identify existing patient- and caregiver-reported outcome and experience measures relevant to SIC and to map these onto a communication outcomes framework to support evaluation of SIC interventions.
Methods
Conceptual framework
Alongside focusing on Kirkpatrick level 4 outcomes, 32 we used the framework by Street et al., which links communication functions to proximal, intermediate, and health outcomes broadly. 33 We applied Street et al.’s framework to specifically conceptualize the relationship between clinical communication and patient and caregiver health outcomes and experiences. Applying it in this way, communication functions refer to the key elements of serious illness communication that matter to patients and caregivers (e.g., information exchange, responding to emotion, managing uncertainty, fostering relationships, making decisions, and enabling self-management). Street et al. posit that specific communication functions influence health outcomes through direct and/or indirect pathways. 33 A direct pathway may link a communication function (e.g., responding to emotion) to specific health outcomes (e.g., improvement in patient emotional well-being or symptom experience). Indirect pathways refer to how a communication function may lead to proximal outcomes (e.g., increased understanding of prognosis) and/or intermediate outcomes (e.g., enhanced trust in the health system), which in turn impact broader health outcomes (e.g., decreased suffering).
Research questions
The specific questions guiding this study are: • What tools measure patient-reported and caregiver-reported outcomes and/or experiences regarding serious illness communication? • How do these tools map onto the Street et al. clinician-patient communication outcomes framework?
Review design
To address these research questions, we conducted an environmental scan.34–36 Environmental scans were originally developed and conducted in the field of business as a tool for retrieving and organizing data for decision making. Since then, environmental scans have been gaining traction in policy, public health, and medical research as an approach for gathering and synthesizing information about what exists within a discourse.37–43 Unlike more standardized knowledge synthesis approaches (e.g., systematic reviews) which employ a specific screening strategy cross-sectionally (generally at one time point), seek to answer a narrowly defined “PICO(T)” question, and often only include peer-reviewed empirical articles, environmental scans are more flexible in nature. There is no agreed-upon gold-standard methodology for conducting an environmental scan.34–36,44 However, some important features of environmental scans are that they are often conducted iteratively, over an extended period of time, and use a variety of techniques and strategies to identify, map, describe, and interpret the current landscape of evidence, policies, programs, measures, and/or practices relevant to a given topic.34–36,44 As such, in comparison to traditional knowledge synthesis approaches (e.g., systematic or scoping reviews), environmental scans offer a more flexible and long-term identification and screening process, and facilitate more expert discussion.
Timeline & expert panel
We conducted an environmental scan over a 3-year period (between July 2022 – June 2025). To support this process, we convened a national panel of 13 SIC experts. The experts included physicians (with specialities in palliative medicine, emergency medicine, family medicine, and oncology), social workers, psychologists, and researchers from across palliative care, health equity, and health services contexts.
Process for identifying articles (i.e., data sources & search strategy)
All panel members individually conducted targeted searches in their domains of expertise. Panel members used a range of strategies to identify relevant measures. These included searching: peer-reviewed journals; conference proceedings (i.e., abstracts and presentations), grey literature (e.g., reports, dissertations, non-indexed articles); reference lists (backward and forward citation searching); and expert elicitation via discussion with scholars. No restriction based on date or country was implemented when identifying articles.
Process for conceptual mapping (i.e., data extraction & synthesis)
All measures encountered by panel members that were deemed relevant for this study were compiled into a master list. To be deemed relevant by panel members, measures must explore an outcome associated with patient-clinician or caregiver-clinician communication. Panel members met monthly over this 3-year period to: discuss the master list, assess whether newly included instruments truly reflect level four of the Kirkpatrick framework, and map measures onto the Street et al. communication framework. Every measure was discussed by the entire panel until consensus was reached. As part of this process, even if some measures were found to have items that could be mapped to more than one element in the framework (e.g., communication functions and proximal outcomes), through deliberation, the panel decided which element the tool most thoroughly addresses overall. After being mapped to the Street et al. framework, each tool was tabulated. The table includes the following information for each tool: year of publication, number of items and response options, psychometric properties (specifically focusing on if an interrater-reliability [ICC] score or a Cronbach’s Alpha [α] was reported), the overall concept(s) being assessed, if the measure reports specific domains, and the target end users for the tool (i.e., patients, caregivers, or both). A narrative synthesis was then conducted to describe general quantitative and qualitative trends.
Results
Key descriptors of patient and caregiver reported measures for serious illness communication.
*Referenced from Google Scholar on December 3, 2025.
Across the four Street et al. framework categories, 8 tools measured communication functions, 18 measured proximal outcomes, 6 measured intermediate outcomes, and 15 measured health outcomes. Of the 47 tools, 31 (66%) were designed for patient use, 10 (21%) for caregiver use, and 6 (13%) were validated for use in both patients and caregivers. Of the 6 tools that were validated for use with both populations, 4 were mapped to the proximal outcomes category and 2 were mapped to the intermediate outcomes category. See Figure 1 for a depiction of all 47 tools mapped onto Street et al.’s framework. Mapping Patient and Caregiver Measures to Street et al,'s Communication Pathways to Health Outcomes Framework
Patient and caregiver reported measures for serious illness communication: concepts and target end users.
Discussion
Previous studies suggest that most evaluations for SIC educational interventions have focused primarily on Kirkpatrick levels 1-3, for example through evaluating program completion (e.g., did the learner complete the entirety of the program and were they satisfied with it), learner perceptions (e.g., change in self-perceived confidence), and sometimes through more objective measures such as evaluation of clinical encounters with standardized patients.31,45–50 This environmental scan identified 47 patient- and caregiver-reported outcome and experience measures that correspond to Kirkpatrick level 4 outcomes. Although the number of available measures appears substantial, the findings reveal a measurement landscape that has developed in a largely uncoordinated manner. Most instruments were created in different eras, focus predominantly on exploring proximal and health outcomes, and showed large variation in their conceptual underpinnings. However, by mapping existing measures onto a communication outcomes framework, we aimed to advance conceptual clarity and theory-driven evaluation for SIC training.
At the same time, the process of mapping measures onto the four domains of the Street et al. framework highlighted several conceptual challenges. Although the categories of communication functions, proximal outcomes, intermediate outcomes, and health outcomes offer a useful organizing structure, the boundaries between these domains are not rigid. Many constructs, such as trust, feeling heard and understood, or emotional acceptance, operate simultaneously as outcomes and as mechanisms through which communication exerts influence. The pathways between domains are often bidirectional, and relational processes unfold over time rather than in discrete stages. This reflects the inherently relational nature of communication in serious illness, where interactions are shaped by ongoing connection, shared meaning, and evolving understanding. Notably, many of the measures identified in this scan focus on psychological or functional outcomes, with fewer capturing relational or existential dimensions such as peace, dignity, identity, or meaning-making. These domains are central to the lived experience of serious illness and may represent important targets for future measure development.
SIC is closely aligned with early palliative care approaches, which emphasize timely conversations about values and goals long before the final stages of illness.28,51 As such, SIC offers a mechanism for operationalizing early palliative care principles across diverse clinical settings. Identifying measures that capture earlier-stage experiences, such as evolving illness understanding, anticipatory coping, or early trust-building, may help health systems evaluate communication practices that influence the entire illness journey.
The scan also revealed a notable imbalance between patient-focused and caregiver-focused measures. Two-thirds of the measures identified were designed for patients, with far fewer validated for caregivers or for use with both groups. This represents a significant gap, given that serious illness is often experienced within the context of family and social relationships, and family caregivers often play a central role in decision-making, care coordination, and emotional support. Communication failures can have substantial consequences for caregivers, including distress, decisional regret, and complicated grief.52,53 In illnesses such as dementia, family caregivers may be the primary recipients of communication from clinicians. 54 The limited availability of caregiver-specific or dyadic measures highlights another opportunity for future research and measure development in SIC.
This study has several strengths. It represents a comprehensive effort to date to identify patient- and caregiver-reported outcomes measures relevant to SIC. The use of an environmental scan, supported by a national expert panel over three years, enabled the inclusion of measures from diverse sources beyond traditional peer-reviewed literature. Mapping measures to the Street et al. framework also provided a structured way to organize a fragmented measurement landscape. However, there are also limitations. As environmental scans do not follow a standardized or exhaustive search protocol, some relevant measures may not have been identified. The mapping process required interpretive judgment, and some constructs could reasonably fit multiple domains. Also, patients and caregivers were not included in the expert panel, which may have influenced selection or categorization of tools.
Finally, several other opportunities emerged across the measurement landscape. Most measures focus on individual clinician-patient interactions, with limited attention to system-level or interprofessional communication, even though SIC is often distributed across teams and care settings. In addition, most measures capture experiences at a single time point rather than across the trajectory of illness, despite the dynamic nature of communication needs and outcomes. Developing measures that reflect longitudinal change, cultural and equity considerations, cumulative communication experiences, and transitions between settings remains an important methodological challenge.
Conclusion
In our study, we identified 47 measures that are used to measure SIC outcomes. Our findings underscore the need for a more integrated, relational, culturally grounded, and trajectory-oriented approach to evaluating SIC at Kirkpatrick level 4 in future research. Establishing a core set of SIC-specific outcome and experience measures would represent a meaningful next step in strengthening the evidence base for SIC training and implementation, and ultimately improving the experiences of people living with serious illness and those who support them.
Footnotes
Acknowledgements
We would like to acknowledge Nadia Incardona, Leah Steinberg, Daryl Bainbridge, Amanda Roze des Ordons, and Zelda Freitas for support and helpful comments during the review of measures.
Ethical considerations
This study encompasses a review and thus does not require ethics approval to complete.
Author contributions
Manuscript conceptualization: HS, AKA. Data collection: HS, ZJ, KZ, OL, JS, JJS, JM. Data curation and analysis: HS, AKA, GM. Visualization: HS, AKA, GM. Drafting the manuscript: HS, AKA, GM. Manuscript editing: HS, AKA, ZJ, KZ, GM, OL, JS, JJS, JM. All authors have read and agreed to the published version of the manuscript.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded through the Health Canada project Integrating Early Palliative Care into Practice: Testing and evaluating practical tools for providers, patients, and families, with Dr. Hsien Seow as Principal Investigator and Dr. Jeff Myers as Co-Principal Investigator. The funder had no role in the data analysis, interpretation, or publication of this work.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
Data is available through the corresponding author upon reasonable request.