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Accelerated population aging has driven substantial growth in demand for palliative care services. Such services can effectively enhance the living quality for end-of-life patients through multidimensional interventions. Currently, China lacks a localised experience-oriented quality assessment scale for palliative care, resulting in gaps in service quality supervision. To develop a self-reported measurement for palliative care services, with the foundation in the Senses Framework.
This study developed a scale by extracting core contributors of palliative care experiences through 14 patients and 16 families' narratives. To refine and improve the scale, a total of 19 experts were invited to participate in a two-round Delphi expert consultation. Additionally, an empirical research was conducted, with 380 valid samples from two independent cohorts collected to complete the full psychometric testing of the scale.
The final Palliative Care Experience Scale (PCES) comprises two dimensions: sense of security and belonging, and sense of purpose and significance, with a total of 13 items. The total variance includes 79.26% that is explained by these two factors. Confirmatory factor analysis confirmed a stable factor structure for the PCES. The scale exhibited good reliability, with a total Cronbach' α of 0.937, McDonald' ω of 0.952, and Spearman-Brown corrected split-half reliability of 0.897. Cronbach's α for both dimensions exceeded 0.88. The scale's SEM was 1.50 and MDC95 was 4.16, offering a validated threshold to identify real changes in patients' palliative care experience.
This study developed an assessment scale of palliative care quality based on the Senses Framework, uniquely centred on patient experiences. Validated through robust methodologies, this scale fills a gap in the evaluation of experiential dimensions of palliative care in China, providing a scientific and feasible measurement tool for the continuous improvement of services.
This study addresses the critical gap of a culturally adapted, patient experience-centred tool for evaluating palliative care service quality in China. Its core finding is the successful development and full psychometric validation of the 13-item Palliative Care Experience Scale (PCES). This research provides a reliable tool for palliative care clinical practice and academic research to capture patients' care experience, offers clinicians and administrators a practical instrument to identify service gaps and guide quality improvement, and delivers foundational reference data for policymakers to advance patient-centred palliative care development in China.
We adhered to the relevant EQUATOR reporting guidelines. The development and validation process followed the COSMIN framework for patient-reported outcome measures.
Patients receiving palliative care and familes played an integral role in designing and conducting this study. In Phase I, qualitative data from semi-structured interviews with 14 patients and 16 families helped define core thematic constructs and develop the initial item pool, which ensured the scale's content validity were based on their real-life experiences. In Phase III, we recruited a new, independent cohort of participants to complete the psychometric testing of the scale, providing key data for its validation.
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