作者
Yisui Su,M H Liu,Ye Chen,Meiliyang Wu,Xi Zhang,Ping Ni,Xiaoli Wei,Chenxi Zhou,Haifeng Gu,H. J. Chen,Ke Zhang,Tieying Zeng
摘要
AIMS: 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. DESIGN: 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. RESULTS: 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. CONCLUSION: 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. IMPACT: 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. REPORTING METHOD: We adhered to the relevant EQUATOR reporting guidelines. The development and validation process followed the COSMIN framework for patient-reported outcome measures. PATIENT OR PUBLIC CONTRIBUTION: 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.