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Patient- and caregiver-reported outcome and experience measures for evaluating serious illness communication: An
Hsien Seow1, Anish K Arora2, Zhimeng Jia3
1Department of Oncology, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada.
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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