Validation of 'Care Of the Dying Evaluation' (CODE^TM) within an international study exploring bereaved relatives' perceptions about quality of care in the last days of life.

Abstract

Assessing quality of care provided during the dying phase using validated tools aids quality assurance and recognizes unmet need. To assess construct validity and internal consistency of 'Care Of the Dying Evaluation' (CODE^TM) within an international context. Post-bereavement survey (August 2017 to September 2018) using CODE^TM. Respondents were next-of-kin to adult patients (≥ 18 years old) with cancer who had an 'expected' death within 22 study site hospitals in 7 countries: Argentina, Brazil, Germany, Norway, Poland, United Kingdom, Uruguay. Exploratory and Confirmatory Factor Analysis (EFA and CFA) were conducted, and internal reliability was assessed using Cronbach alpha (α). Known group validity was assessed by ability to discriminate quality of care based in place (Palliative Care Units (PCUs)) and country (Poland, where most deaths were in PCUs) of care. Differences were quantified using effect sizes (ES). A 914 CODE^TM questionnaires completed (54% response rate). 527 (58%) male deceased patients; 610 (67%) next-of-kin female who were most commonly the 'spouse/partner' (411, 45%). EFA identified 4 factors: 'Overall care,' 'Communication and support,' 'Trust, respect and dignity,' and 'Symptom management' with good reliability scores (α = 0.628 - 0.862). CFA confirmed the 4-factor model; these were highly correlated and a bifactor model showed acceptable fit. The ES for quality of care in PCU's was 0.727; ES for Poland was 0.657, supporting the sensitivity of CODE^TM to detect differences. Within an international context, good evidence supports the validity and reliability of CODE^TM for assessing the quality of care provided in the last days of life.