ReviewPalliative care and social practice2026
Patient- and caregiver-reported outcome and experience measures for evaluating serious illness communication: An environmental scan.
Review in Palliative care and social practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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9 authors.
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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.
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