OBJECTIVES: To develop a comprehensive generic instrument - Quality of Care for Patients with Advanced Illnesses (QCPAI) - for measuring the quality of end-of-life (EOL) care from the patients’ perspective.

METHODS: The instrument development was carried out in 5 steps: Scoping review, item development, translation, cognitive debriefing, and reconciliation. A scoping review of articles measuring EOL care was conducted to identify key dimensions of EOL care from patients’ perspectives. QCPAI items with 5 response levels were developed to capture the identified dimensions. Two versions of QCPAI were developed –self-administration by patients and proxy-administration by family caregivers– and translated into Chinese. The initial versions were pilot tested via cognitive debriefing using semi-structured qualitative interviews with advanced cancer patients and family caregivers from Singapore. Feedback on the clarity and understandability of instructions, items, response categories, and coverage of the dimensions was incorporated during the reconciliation step to finalize the instrument.

RESULTS: The scoping review identified 10 dimensions of EOL care: safety, appropriateness of care, coordination and continuity of care, health-related quality of life, life continuity, dignity, empowerment, hope, effective interpersonal interactions and relations, and effective communication. An initial version of the QCPAI with 17 items was developed in English and Chinese languages. These versions were pilot tested in 12 patients with stage IV cancers (age range 40-85 years, 50% female, 83% Chinese ethnicity, a mix of cancer types – colon/colorectal & rectum, lung, breast, and others) and 10 family caregivers (age range 28-65 years, 70% female). Based on their feedback, 4 items with overlapping concepts were removed, and 2 new items were added to cover more aspects of care. The final version had 15 items.

CONCLUSIONS: The QCPAI measuring all key aspects of EOL care was developed to be self-administered by patients or family caregivers in English and Chinese languages.