Development and preliminary validation of a patient-report experience measure of acute oncology: The PREMAC study

BACKGROUND: Patients with cancer often experience oncological emergencies requiring immediate care, and the quality of acute oncology (AO) care varies between providers. Patient-reported experience measures (PREMs) are a key tool for quality improvement, but none currently exists for AO. This study developed a prototype PREM, the Patient-Reported Experience Measure for Acute OnCology (PREMAC), and conducted preliminary single-site psychometric testing. MATERIALS AND METHODS: A quality assessment framework guided development across three stages. Stage 1 generated a conceptual framework of accessing AO services from a scoping review and interviews with patients and health professionals. Stage 2 developed a prototype questionnaire, with content validity assessed by a Service User Reference Panel (SURP) and face validity tested through cognitive interviews. Stage 3 tested acceptability, feasibility, structural validity and internal consistency at one tertiary cancer centre in southern England. RESULTS: Data integration identified ten domains, in the chronological order patients accessing AO experience them: reasons for accessing AO; patient preparedness; accessibility of care; the care environment; competence of care; communication and decision-making; compassionate care; the carer's role; patient anxiety; and service issues including discharge. The 46-item prototype was completed by 171 respondents. Exploratory factor analysis of 18 four-category ordinal items, using polychoric correlations with minimum residual extraction and oblimin rotation (n = 121 complete cases), supported three provisional domains: information, communication, involvement and perceived care quality (α = 0.935); care environment, dignity, trust and safety (α = 0.711); and discharge information and preparedness (α = 0.704). CONCLUSION: PREMAC is the first PREM developed specifically for AO. Preliminary testing indicates the prototype is acceptable and feasible, with early evidence of internal coherence across three provisional domains at a single site. The domain structure and item allocations remain provisional; no total score is recommended. Multisite validation is required before PREMAC could support service comparison or benchmarking.