Development and validation of a measurement tool to assess perceptions of palliative care

Understanding patient's perceptions about palliative care is necessary to make an effective referral. The aim was to develop and validate a measure of patient perceptions.

Items were generated through patient, family caregiver and health professional interviews. The Perceptions of Palliative Care Instrument (PPCI) was administered to 85 patients with advanced cancer (AC). A subset (n = 39) completed it 7 days later. Participants also completed the Palliative Care Outcome Scale (POS), the Edmonton Symptom Assessment Scale (ESAS) and the Distress Thermometer (DT) for validation purposes.

Factor analysis revealed four domains (positive and negative emotional and cognitive reactions to palliative care, emotional and practical palliative care needs and perceptions of health) and eight subscales with factor loadings for all items above 0.51, explaining 61-81% of the total variance. Reliability analyses revealed high internal consistency (Cronbach's alpha coefficients >0.76). Intraclass correlation coefficients showed moderate to strong correlations between time points indicating stability over time. All POS items correlated with two or more dimensions of the PPCI (all r > 0.30); ESAS total distress correlated positively with the palliative care needs domain and the DT with needs and perceived burden (all r > 0.30).

The PPCI is a four-factor, 37-item measure that assesses perceptions of palliative care held by patients with AC. The measure has good internal consistency, test-retest reliability and convergent validity.