Patient- and caregiver-reported outcome and experience measures for evaluating serious illness communication: An environmental scan

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

Serious illness communication clinical communication patient-clinician encounters patient-reported outcomes patient-reported experiences evaluation & measurement

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

A total of 47 tools measured Kirkpatrick Level 4 outcomes. Most tools (40; 85%) were published in the year 2000 or later, with 19 tools (40%) being developed within the past 10 years. Among those published before 2000, 6 (13%) were published in the 1990s and 1 (2%) was published in the 1980s. Most tools (36; 77%) provided Cronbach’s alpha values, of which 32/36 (88%) reported α ≥ 0.80 for the entire measure or at least one of its subscales. One tool (2%) reported both a Cronbach’s alpha and an ICC score. Two tools (4%) only reported an ICC score. Nine tools (19%) did not report a Cronbach’s alpha or ICC values. Almost all tools (43; 91%) have been cited at least 10 times on Google Scholar. Also, 26 tools (55%) were cited at least 100 times, of which 8 (31%) were cited over 1000 times, with the Hospital Anxiety and Depression Scale being the most cited tool. See the Table 1 for a detailed summary of the 47 measures.

Table 1.

Key descriptors of patient and caregiver reported measures for serious illness communication.

Tool Name (acronym)	Citations on Google Scholar*	Publication Date	Number of Items; Response Options	Psychometrics Properties (ICC or Cronbach’s alpha)
Bakas Caregiver Outcomes (BCO) Scale	9	2006	15; 11-items use 7-point scale and 4- open responses	α = 0.90; ICC = 0.94
Caregiver preparedness scale (CPS)	59	2018	8; 5-point scale	α = 0.94
CAregiver Perceptions About Communication with Clinical Team members (CAPACITY) Instrument	31	2019	14; 4-point scale	α = 0.90-0.93
Caregiver Reaction Assessment (CRA)	93	2012	24; 5-point scale	α = 0.66-0.82
Caregiver Strain Index (CSI)	63	2002	13; yes/no	α = 0.86
Caregiver Quality of Life Index-Cancer Scale (CQOLC)	626	1999	35; 5-point scale	α = 0.91
Center of Epidemiologic Studies Depression (CES-D) Scale	403	2015	8; 4-point scale	α = 0.84
collaboRATE Survey	363	2014	3; 5- or 10-point scale	ICC = 0.82;0.86
Communication Assessment Tool (CAT)	568	2007	15; 5-point scale	α = 0.96
Compassion Measure (CM)	4	2019	5; 5-point scale	α = 0.94
Consultation and Relational Empathy (CARE) measure	353	2005	10; 5-point scale	ICC > 0.8
Death Preparedness Scale (DPS)’s Preparation for End-of-Life subscale	21	2022	5; 5-point scale	Not Reported
Decisional conflict scale (DCS)	2859	2010	16; 5-point scale	α = 0.78
Edelen Experience of Feeling Heard and Understood (EEFHU)	32	2022	4; 5-point scale	α = 0.84
Functional Assessment of Chronic Illness Therapy (FACIT) Measurement	1919	2003	27; 5-point scale	Not Reported
General Self-Efficacy (GSE) Scale	549	1995	10; 4 -point scale	α = 0.76-0.90
Herth Hope Index (HHI)	54	2024	12; 4-point scale	Not Reported
Hospital Anxiety and Depression Scale (HADS)	12881	2000	14; 4-point verbal rating scale	α > 0.7
ICECAP-Supportive Care Measure (ICECAP-SCM)	9	2022	4-point scale	Not Reported
Illness Perception Questionnaire (IPQ)	4228	2002	38; 5-point scale	α = 0.79-0.89
Integrated Palliativecare Outcome Scale (IPOS)	399	2019	20; 5-point scale	α = 0.77
McGill Quality of Life Questionnaire (MQOL)	977	1995	15; 7-point scale	α = 0.80
Medical Outcome Study - Social Support Survey (MOS-SSS)	9013	1991	19; 5-point scale	α = 0.91-0.97
Montgomery-Borgatta Caregiving Burden (MBCB) Scale	101	2020	14; 5-point scale	α = 0.74-0.88
My Conversations Tool (MCT)	1	2024	3; mix of response options	Not reported
Patient-Centered Communication (PCC) Scale	85	2017	36 version and 6 item version; 5-point scale	α > 0.90
Patient Doctor depth of relationship scale (PDDRS)	112	2011	9; 5-point scale	α = 0.93
Patient-Doctor Relationship Questionnaire (PDRQ-9)	359	2002	9; 5-point scale	α = 0.94
Patient’s understanding of their prognosis survey (PUPS)	12	2022	9; 3-point scale	Not Reported
Peace, Equanimity, and Acceptance in the cancer experience (PEACE) scale	183	2008	12; 4-point scale	α = 0.78-0.81
Perceived Efficacy in Patient-Physician Interactions (PEPPI) scale	408	1998	10; 5-point scale	α = 0.91
Post Traumatic Growth Index-SF (PTGI-SF)	1085	2010	10; 6-point scale	α = 0.90
Prognosis and treatment perceptions questionnaire (PTPQ)	32	2020	28; mix of response options	Not Reported
Prognostic Awareness Impact Scale (PAIS)	29	2022	34; 4-point scale	Not Reported
Quality Care Questionnaire–End of Life (QCQ–EOL)	47	2006	16; 4-point scale	α = 0.73-0.89
Quality of Communication (QoC) Questionnaire	222	2006	13; 10-point scale	α ≥ 0.79
Quality of life at the end of life (QUAL-E)	245	2004	20; 5-point scale	α = 0.68-0.87
Questionnaire on Quality of Physician-Patient Interaction (QQPPI)	1188	2010	14; 5-point scale	α = 0.95
Relational Communication Scale (RCS)	917	1984	30; 7-point scale	Not Reported
Roberts 5-Item Compassion Measure (RCM)	34	2021	10; 4-point scale	α = 0.96
Seven-Item Patient-Centered Communication (PCC) scale	35	2022	7; 4-point scale	α = 0.92
Supportive Care Needs Survey (SCNS) Short Form 34	34	2011	34; 4-point scale	α > 0.8
The Human Connection (THC) Scale	222	2009	16; 4-point scale	α = 0.90
The Sinclair Compassion Questionnaire (SCQ)	58	2024	15; 5-point scale	α = 0.96
Trust in Physician scale (TPS)	1315	1999	11; 5-point scale	α = 0.89
Wake forest physician trust scale (WFPTS)	97	2018	10; 5-point scale	α = 0.93
Zarit Burden Interview (ZBI)	236	2007	22; 5-point scale	α = 0.92

*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.

Figure 1.

Mapping Patient and Caregiver Measures to Street et al,'s Communication Pathways to Health Outcomes Framework

The conceptual foundations of the 47 tools were highly diverse. Tools mapped to communication functions generally assessed how patients or caregivers experience communication with their clinicians overall (e.g., clarity, responsiveness, empathy, shared understanding). These tools captured perceived quality of interactions rather than downstream effects. For example, several tools mapped to this domain included general patient-centred communication, quality of communication, or communication assessment measures. When moving to proximal outcomes, tools began targeting concepts that were essentially preliminary outcomes from “good communication” such as building trust, illness understanding, and feeling heard and understood. Tools mapped to intermediate outcomes generally measured internal states or capacities within patients and/or caregivers, qualities which seem to evolve over the span of several clinical encounters (e.g., peace, hope, and perceived social support). Finally, tools mapped to the health outcomes domain generally assessed downstream psychological, functional, or quality-of-life states in patients and/or caregivers (e.g., anxiety, depression, symptom burden, overall well-being, caregiver strain). Many tools operationalized the constructs they were measuring through multiple domains or subscales capturing informational, relational, psychological, and functional aspects of the patient or caregiver experience or outcome. Some of these concepts could span different outcomes of the framework. For example, trust could be a proximal outcome and an intermediate outcome. See Table 2 for a summary of the concepts measured and target end-users for all 47 patient and caregiver reported measures.

Table 2.

Patient and caregiver reported measures for serious illness communication: concepts and target end users.

Tool Name (acronym)	Overall Concept(s) Measured (Domains/sub-scales in bullet points if listed)	Target End Users
The Human Connection (THC) Scale	Therapeutic alliance	Patients
Communication Assessment Tool (CAT)	Physician communication skills	Patients
Perceived Efficacy in Patient-Physician Interactions (PEPPI) scale	Perceived efficacy	Patients
Quality of Communication (QoC) Questionnaire	• General communication skills	Patients
Quality of Communication (QoC) Questionnaire	• Communication about end-of-life care	Patients
Relational Communication Scale (RCS)	Interpersonal communication attributes	Patients
	• Intimacy/similarity
	• Dominance
	• Composure/arousal
	• Formality
	• Task v. social orientation
Patient-Centered Communication (PCC) Scale	Patient-centred communication	Patients
	• Exchanging information
	• Fostering healing relationships
	• Making decisions
	• Responding to emotions
	• Enabling patient self-management
	• Managing uncertainty
Seven-Item Patient-Centered Communication (PCC) scale	Patient-centred communication	Patients
CAregiver Perceptions About Communication with Clinical Team members (CAPACITY) Instrument	• Communication domain	Caregivers
	• Capacity domain	Caregivers
Questionnaire on Quality of Physician-Patient Interaction (QQPPI)	Quality of the physician–patient interaction	Patients
My Conversations Tool (MCT)	Advanced Care Planning (ACP)	Patients
	• What is important to patients as it relates to health care preferences (values, wishes, goals, spiritual beliefs)
	• Prognosis (life expectancy, course of illness)
	Fears and concerns
collaboRATE Survey	Shared Decision Making (SDM)	Patients
Prognostic Awareness Impact Scale (PAIS)	• Cognitive understanding of prognosis	Patients
	• Emotional coping
	Adaptive response
The Sinclair Compassion Questionnaire (SCQ)	Compassion	Patients
	• Relational communication
	• Virtuous Response
	• Attending to needs
	• Seeking to understand
	Relational space
Roberts 5-Item Compassion Measure (RCM)	Patient assessment of physician and nurse compassion	Patients
Illness Perception Questionnaire (IPQ)	Illness perceptions	Patients
	• Timeline
	• Consequences
	• Personal control
	• Treatment control
	• Emotional representations
	• Illness coherence
	• Psychological, risk factor, immune, and chance attributions
Wake forest physician trust scale (WFPTS)	Trust in a physician	Patients
Trust in Physician scale (TPS)	Patient-physician trust	Patients
Patient Doctor depth of relationship scale (PDDRS)	Patient-doctor depth-of-relationship	Patients
Consultation and Relational Empathy (CARE) measure	Consultation and relational empathy	Patients
Patient-Doctor Relationship Questionnaire (PDRQ-9)	Patient-doctor relationships	Patients
Patient’s understanding of their prognosis survey (PUPS)	Prognosis understanding	Patients
	• Perceived curability
	• Treatment options
	• Illness trajectory
Caregiver preparedness scale (CPS)	Caregiver preparedness for caregiving	Caregivers
Edelen Experience of Feeling Heard and Understood (EEFHU)	Feeling heard & understood	Patients & Caregivers
	• Therapeutic alliance
	• Trust
	• Whole-person orientation
Death Preparedness Scale (DPS)’s Preparation for End-of-Life subscale	Emotional preparedness for death	Patients & Caregivers
Decisional conflict scale (DCS)	Decisional conflict	Patients & Caregivers
	• Uncertainty
	• Informed
	• Values clarity
	• Support
	• Effective decision
Prognosis and treatment perceptions questionnaire (PTPQ)	Prognosis and treatment perceptions	Patients & Caregivers
Supportive Care Needs Survey (SCNS) Short Form 34	Supportive care needs	Patients
	• Psychological
	• Health system and information
	• Physical and daily living
	• Patient care and support
	• Sexuality
Peace, Equanimity, and Acceptance in the cancer experience (PEACE) scale	Emotional acceptance of a terminal illness	Patients
	• Struggle with illness
	• Peaceful acceptance
General Self-Efficacy (GSE) Scale	General self-efficacy	Patients
Medical Outcome Study - Social Support Survey (MOS-SSS)	Availability of support	Caregivers
	• Emotional/informational support
	• Tangible support
	• Affectionate support
	• Positive social interaction
Herth Hope Index (HHI)	Hope	Patients & Caregivers
	• Temporality and future
	• Positive readiness and expectancy
	• Interconnectedness
Compassion Measure (CM)	Clinical compassion	Patients & Caregivers
Hospital Anxiety and Depression Scale (HADS)	Anxiety and depression	Patients
McGill Quality of Life Questionnaire (MQOL)	Quality of life	Patients
	• Physical symptoms
	• Psychological symptoms
	• Outlook on life
	• Meaningful existence
Quality Care Questionnaire–End of Life (QCQ–EOL)	Quality of care at end of life	Patients
	• Dignity-conserving care
	• Care by health care professionals
	• Individualised care
	• Relationship with family
Quality of life at the end of life (QUAL-E)	Quality of life at the end of life	Patients
	• Life completion
	• Symptom impact
	• Relationship with healthcare provider
	• Preparation for end of life
Functional Assessment of Chronic Illness Therapy (FACIT) Measurement	Chronic illness therapy	Patients
	• Physical Well-Being
	• Social/Family Well-Being
	• Emotional Well-Being
	• Functional Well-Being
Post Traumatic Growth Index-SF (PTGI-SF)	Posttraumatic growth	Patients
	• Relating to others
	• New possibilities
	• Personal strength
	• Spiritual change
	• Appreciation of life
Integrated Palliativecare Outcome Scale (IPOS)	Advance illness	Patients
	• Physical symptoms
	• Emotional symptoms
	• Communication/practical issues
ICECAP-Supportive Care Measure (ICECAP-SCM)	Capability as a measure of patient wellbeing in palliative and supportive care	Patients
	• Choice
	• Love and affection
	• Freedom from physical and emotional suffering
	• Dignity
	• Being supported and preparation
Caregiver Quality of Life Index-Cancer Scale (CQOLC)	Impact of caregiving on quality of life	Caregivers
Caregiver Reaction Assessment (CRA)	Burden and reaction of caregiving	Caregivers
	• Impact on schedule
	• Caregiver’s esteem
	• Lack of family support
	• Impact on health
	• Impact on finances
Center of Epidemiologic Studies Depression (CES-D) Scale	Symptoms of depression	Caregivers
Caregiver Strain Index (CSI)	Caregiver strain	Caregivers
	• Employment
	• Financial
	• Physical
	• Social
	• Time
Bakas Caregiver Outcomes (BCO) Scale	Life changes resulting from providing care	Caregivers
Zarit Burden Interview (ZBI)	Caregiver burden	Caregivers
Montgomery-Borgatta Caregiving Burden (MBCB) Scale	Caregiver burden	Caregivers
	• Objective burden
	• Demand burden
	• Stress burden

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.

ORCID iD

Anish K. Arora

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.*

References

Baxter

Pusa

Andersson

, et al. Core elements of serious illness conversations: an integrative systematic review. BMJ Support Palliat Care 2024; 14(e3): e2268–e2279. https://doi.org/10.1136/SPCARE-2023-004163

Shilling

Manz

Strand

, et al. Let Us Have the Conversation: Serious Illness Communication in Oncology: Definitions, Barriers, and Successful Approaches. American Society of Clinical Oncology Educational Book 2024; 44(3): e431352. https://doi.org/10.1200/EDBK_431352

Haun

Estel

Ruecker

, et al. Early palliative care for adults with advanced cancer. Cochrane Database of Systematic Reviews 2017; 6.

Vanbutsele

Pardon

Van Belle

, et al. Effect of early and systematic integration of palliative care in patients with advanced cancer: a randomised controlled trial. The Lancet Oncology 2018; 19(3): 394–404. https://doi.org/10.1016/S1470-2045(18)30060-3

Dionne-Odom

Azuero

Lyons

, et al. Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial. Journal of clinical oncology 2015; 33(13): 1446–1452. https://doi.org/10.1200/JCO.2014.58.7824

Jacobsen

Bernacki

Paladino

. Shifting to serious illness communication. Jama 2022; 327(4): 321–322. https://doi.org/10.1001/jama.2021.23695

Myers

Steinberg

Incardona

, et al. Simplifying serious illness communication: preparing or deciding. Current Oncology 2024; 31(10): 5832–5837. https://doi.org/10.3390/curroncol31100433

Arora

Seow

Bainbridge

, et al. Multi-methods development and validation of a tool for use in measuring serious illness communication competence: Assessment of Clinical Encounters–Communication Tool (ACE-CT). Patient Education and Counseling 2025; 23: 109465. https://doi.org/10.1016/j.pec.2025.109465

Walling

Lorenz

, et al. Evidence-based recommendations for information and care planning in cancer care. Journal of Clinical Oncology 2008; 26(23): 3896–3902. https://doi.org/10.1200/JCO.2007.15.9509

10.

Buss

Lessen

Sullivan

, et al. Hematology/oncology fellows’ training in palliative care: results of a national survey. Cancer 2011; 117(18): 4304–4311. https://doi.org/10.1002/CNCR.25952

11.

Buss

Lessen

Sullivan

, et al. ’A study of oncology fellows’ training in end-of-life care. J Support Oncol 2007; 5(5): 237–242. https://europepmc.org/article/med/17564154 (Accessed May 4, 2025).

12.

Calam

Far

Andrew

. Discussions of “code status” on a family practice teaching ward: what barriers do family physicians face? CMAJ 2000; 163(10): 1255–1259. https://www.cmaj.ca/content/163/10/1255.short (Accessed May 4, 2025).

13.

Gorman

Ahern

Wiseman

, et al. Residents’ end-of-life decision making with adult hospitalized patients: a review of the literature. Academic Medicine 2005; 80(7): 622–633. https://doi.org/10.1097/00001888-200507000-00004

14.

Sanders

Paladino

Reaves

, et al. Quality measurement of serious illness communication: recommendations for health systems based on findings from a symposium of national experts. J Palliat Med 2020; 23(1): 13–21. https://doi.org/10.1089/JPM.2019.0335

15.

Bernacki

Paladino

Neville

, et al. Effect of the serious illness care program in outpatient oncology: a cluster randomized clinical trial. JAMA Intern Med 2019; 179(6): 751–759. https://doi.org/10.1001/jamainternmed.2019.0077

16.

Detering

Hancock

Reade

, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340: c1345. https://doi.org/10.1136/bmj.c1345

17.

Wright

Zhang

Alaka Ray

, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665. 1673. https://doi.org/10.1001/jama.300.14.1665, Accessed May 4, 2025.https://jamanetwork.com/journals/jama/article-abstract/182700

18.

Heyland

Allan

Rocker

, et al. Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care. Open Medicine 2009; 3(2): e101–e110. https://pmc.ncbi.nlm.nih.gov/articles/PMC2765767/ (Accessed May 4, 2025).

19.

Stewart

. Effective physician-patient communication and health outcomes: a review. Can Med Assoc J 1995; 152(9): 1423–1433. https://pmc.ncbi.nlm.nih.gov/articles/PMC1337906/ (Accessed May 4, 2025).

20.

Bredart

Bouleuc

Dolbeault

. Doctor-patient communication and satisfaction with care in oncology. Curr Opin Oncol 2005; 17(4): 351–354. https://doi.org/10.1097/01.cco.0000167734.26454.30

21.

Kmietowicz

. Half of complaints about hospitals concern poor communication and attitude. BMJ 2015; 351: h5036. https://doi.org/10.1136/BMJ.H5036

22.

Chang

Carter

, et al. Association of clinician burnout and perceived clinician-patient communication in the Emergency Department. The American journal of emergency medicine 2017; 36(1): 156.

23.

Emold

Schneider

Meller

, et al. Communication skills, working environment and burnout among oncology nurses. European Journal of Oncology Nursing 2011; 15(4): 358–363. https://doi.org/10.1016/j.ejon.2010.08.001

24.

Weeks

Cook

O’day

, et al. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 1998; 279: 1709–1714. https://doi.org/10.1001/jama.279.21.1709

25.

Joint Commission International . Communicating Clearly and Effectively to Patients How to Overcome Common Communication Challenges in Health Care. Published online. https://store.jointcommissioninternational.org/assets/3/7/jci-wp-communicating-clearly-final_(1).pdf (2018), Accessed May 4, 2025.

26.

Guppy

Widlund

Munro

, et al. Incivility in healthcare: the impact of poor communication. BMJ Leader. 2024;8, 83, 87. https://doi.org/10.1136/leader-2022-000717(1). Accessed May 4, 2025.https://bmjleader.bmj.com/content/8/1/83.abstract

27.

Morrison

. Advance directives/care planning: clear, simple, and wrong. J Palliat Med 2020; 23(7): 378–379. DOI: 10.1089/jpm.2020.0272.

28.

Bernacki

Hutchings

Vick

, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open 2015; 5: 9032. https://doi.org/10.1136/bmjopen-2015

29.

Arnold

Back

Baile

, et al. The oncotalk/vitaltalk model. Oxford textbook of communication in oncology and palliative care 2017; 24: 363–368.

30.

Pereira

. Building Primary Palliative Care Capacity Through Education at a National Level: Pallium Canada and its LEAP Courses. Published online. https://dialnet.unirioja.es/servlet/tesis?codigo=306894 (2021), Accessed May 4, 2025.

31.

Lavecchia

Myers

Bainbridge

, et al. Education modalities for serious illness communication training: A scoping review on the impact on clinician behavior and patient outcomes. Palliat Med 2024; 38(2): 170–183. https://doi.org/10.1177/02692163231186180

32.

Kirkpatrick

. Kirkpatrick's four levels of training evaluation. Association for Talent Development 2016.

33.

Street

JRL

Makoul

Arora

, et al. How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient education and counseling 2009; 74(3): 295–301. https://doi.org/10.1016/j.pec.2008.11.015

34.

Harris

Brooker

. Environmental Scanning: A Look to the Future. New Directions for Evaluation. 2025 Mar 2025; 2025(185-186): 33–41. https://doi.org/10.1002/ev.20633

35.

Graham

Evitts

Thomas-MacLean

. Environmental scans: how useful are they for primary care research? Canadian Family Physician 2008; 54(7): 1022–1023.

36.

Canadian Population Health Initiative . An environmental scan of research transfer strategies: Canadian Institute for Health Information, 2001.

37.

Charlton

Doucet

Azar

, et al. The use of the environmental scan in health services delivery research: a scoping review protocol. BMJ open 2019; 9(9): e029805. https://doi.org/10.1136/bmjopen-2019-029805

38.

Charlton

Kean

Liu

, et al. Use of environmental scans in health services delivery research: a scoping review. BMJ open 2021; 11(11): e050284. https://doi.org/10.1136/bmjopen-2021-050284

39.

Kalavani

Mehrolhassani

Pedram

, et al. Environmental scanning model in health system and implementation steps: A scoping review. Iranian Journal of Public Health 2024; 53(6): 1261–1271.

40.

Rockville

Maurer

Dardess

, et al. Guide to patient and family engagement: Environmental scan report: Agency for Healthcare Research and Quality, 2012.

41.

Lowry

Tremblay-Vaillancourt

Beaupré

, et al. How patient-reported outcomes and experience measures (PROMs and PREMs) are implemented in healthcare professional and patient organizations? An environmental scan. Journal of patient-reported outcomes 2024; 8(1): 133. https://doi.org/10.1186/s41687-024-00795-9

42.

Kleib

Arnaert

Nagle

, et al. Resources to support Canadian nurses to deliver virtual care: environmental scan. JMIR Medical Education 2024; 10(1): e53254. https://doi.org/10.2196/53254

43.

Hatef

Austin

. Environmental Scan to Determine the Current State of Existing, Related Frameworks and Best Practices for Creating Equitable Healthcare Solutions Involving Digital Technologies. Agency for Healthcare Research and Quality, 2023. https://publichealth.jhu.edu/sites/default/files/2025-03/AHRQ-environmental-scan.pdf

44.

Nguyen

Esmail

Di Rezze

, et al. An environmental scan of studies reporting current practices for the conduct of environmental scans. The Australian Journal of Advanced Nursing 2024; 41(3): 50–57. https://doi.org/10.37464/2024.413.816

45.

Beigzadeh

Bahmanbijari

Sharifpoor

, et al. Standardized patients versus simulated patients in medical education: are they the same or different. Journal of Emergency Practice and Trauma 2016; 2(1): 25–28. https://doi.org/10.15171/JEPT.2015.05

46.

Hafid

Howard

Guenter

, et al. Advance care planning conversations in primary care: a quality improvement project using the Serious Illness Care Program. BMC Palliat Care 2021; 20(1): 1–10. https://doi.org/10.1186/S12904-021-00817-Z/tables/3

47.

Grudzen

Siman

Cuthel

, et al. Palliative Care Initiated in the Emergency Department: A Cluster Randomized Clinical Trial. JAMA 2025; 333(7): 599–608. https://doi.org/10.1001/JAMA.2024.23696

48.

Seow

Bishop

Myers

, et al. Outcome measures in palliative care training interventions: a systematic review of trial-based studies. Ann Palliat Med 2023; 12(2): 39917. https://doi.org/10.21037/apm-22-947

49.

Bainbridge

Bishop

Myers

, et al. Effectiveness of training programs about a palliative care approach: a systematic review of intervention trials for health care professionals. J Palliat Med 2023; 26(4): 564–581. https://doi.org/10.1089/JPM.2022.0051

50.

Burt

Abel

Elliott

, et al. The evaluation of physicians’ communication skills from multiple perspectives. The Annals of Family Medicine 2018; 16(4): 330–337. https://doi.org/10.1370/afm.2241

51.

Jacobsen

Jackson

Dahlin

, et al. Components of early outpatient palliative care consultation in patients with metastatic nonsmall cell lung cancer. Journal of palliative medicine 2011; 14(4): 459–464. https://doi.org/10.1089/jpm.2010.0382

52.

Boyle

Miller

Forbes-Thompson

. Communication and end-of-life care in the intensive care unit: patient, family, and clinician outcomes. Critical care nursing quarterly 2005; 28(4): 302–316. https://doi.org/10.1097/00002727-200510000-00002

53.

Shinada

Kohno

Fukuda

, et al. Caregiver experience with decision-making difficulties in end-of-life care for patients with cardiovascular diseases. Journal of Cardiology 2022; 79(4): 537–544. https://doi.org/10.1016/j.jjcc.2021.11.001

54.

Geddis‐Regan

Errington

Abley

, et al. Enhancing shared and surrogate decision making for people living with dementia: a systematic review of the effectiveness of interventions. Health Expectations 2021; 24(1): 19–32. https://doi.org/10.1111/hex.13167