A novel Scale to Assess Palliative Care Patients' Experience of Feeling Heard and Understood

Patient experience of palliative care serves as an important indicator of quality and patient-centeredness.

To develop a novel patient-reported scale measuring ambulatory palliative care patients' experience of feeling heard and understood by their providers.

We used self-reported patient experience data collected via mixed-mode survey administration. We conducted an exploratory factor analysis (EFA) and an expert panel ranking exercise to reduce the 10-item set based on underlying dimensionality. We then used item response theory (IRT) to calibrate remaining items based on psychometric properties and test information and precision. We considered item-level fit and examined the standardized local dependence chi-square statistics. We evaluated candidate items for differential item functioning by survey mode. We evaluated the test-retest reliability and validity of the final scale.

The EFA yielded a single factor (9/10 items had loadings > 0.80 on the single factor). We removed two items with the lowest factor loadings and ranked by the expert panel as being least reflective of the overall construct. IRT calibration of the remaining eight items showed high slopes (range 2.66 - 5.18); location parameters were all negative (range -0.90 - -0.36). We removed two more items based on local dependence indices and item-level fit. Combining psychometric information with the expert ratings we established the final 4-item scale, which was reliable (Cronbach's alpha = 0.84; polychoric correlation coefficient = 0.72) and had good convergent validity.

This novel multi-item Feeling Heard and Understood scale can be used to measure and improve ambulatory palliative care patient experience.