Incorporating the Patient and Caregiver Voice in Palliative Care Quality Measure Development

Despite rapid growth in outpatient palliative care, we lack an understanding of patient and caregiver experiences of care received in this context.

As part of a national effort to develop palliative care quality metrics for use in accountability programs, we sought to develop survey items assessing patients' experiences of outpatient palliative care, incorporating the patient's voice.

We conducted 25 one-hour telephone cognitive interviews using a convenience sample of outpatient palliative care patients and caregivers to cognitively test survey items. Guided by a semi-structured protocol, we assessed the comprehensibility, ambiguity, and adaptability of survey instructions and specific items/response options.

Participants generally understood the intended meaning of the question content. Some participants struggled with the stated time period of three months as a reference period for reporting their experiences. While some expressed preferences for question wording, no clear patterns emerged across participants.

In general, question wording and response options did not present challenges to understanding content. Respondents ascribed a variety of meanings to the concepts, validating that the measures capture a range of experiences. However, the referenced timeframe of three months was more difficult to answer for some questions than others. Implications for research, policy or practice: Based on the findings from the cognitive testing, the survey items are being tested as part of a national study to understand the quality of care for patients. These measures may be used in the future by Medicare to help outpatient palliative care programs improve their care.