Ambulatory Palliative Care Patients’ Experience of Receiving Desired Help for Pain

The percentage of patients aged 18 years and older who had an ambulatory palliative care visit and report getting the help they wanted for their pain from their palliative care provider and team within 6 months of the ambulatory palliative care visit.

Response to NQF request for clarification: 

1. Per the recommendation of our technical expert clinical user and patient panel (TECUPP), survey items refer to “this provider and team” which reflects the interdisciplinary team structure of care delivery in ambulatory palliative care. Providers can be one of many MIPS-eligible provider types, ranging from doctors of medicine to clinical nurse specialists. Providers serve as the lead of the palliative care team and are therefore referenced (i.e., named) at the start of the survey instrument. To identify the reference provider named on the survey instrument for each patient, the data set was first filtered to include only visits with MIPS-eligible provider types that occurred in the three months prior to the anticipated start date of survey fielding. We then selected the MIPS-eligible provider whom the patient saw most often within the three-month period, with ties in numbers of visits broken by provider type, giving preference to providers holding primary responsibility for patient care outcomes (e.g., physician or physician-designee over nurse or therapist). If patients had multiple visits, we selected the most recent visit for each patient with the reference provider. We did not conduct testing to specifically evaluate how patients differentiated between team members in their responses to the survey items. 
2. We will consult with our TECUPP and advisors about potential revisions to the measure description prior to full submission. The proposed measure is intended to have a broad timeframe, as pain interventions and time frames for improvement may vary based on patient preferences and goals, and individual patients with serious illness make important tradeoffs (e.g., patients may prefer experiencing moderate pain in exchange for remaining alert or avoiding treatment side effects). Furthermore, our TECUPP, particularly members with lived experiences of palliative care, emphasized the many different kinds of pain, from physical to emotional to spiritual to existential, and recommended that “pain” not be defined in the measure but be left to the interpretation of the patient. Therefore, this measure is asking about the patient’s holistic experience of their pain during the course of treatment and whether the provider and team provided the help they wanted.
3. We were unable to specifically test accuracy of recall of subjective experiences of pain among ambulatory palliative care patients who completed the survey. Ambulatory palliative care is often started earlier in the disease trajectory to promote quality of life over the course of serious illness. We selected the time frame parameters based on discussion with palliative care experts from our technical expert clinical user and patient panel (TECUPP) and advisory board and confirmed the feasibility of these time frame parameters in testing. In addition, prior to field testing, we conducted cognitive testing of the Receiving Help for Pain data elements through 25 interviews with ambulatory palliative care patients and their family members to establish the comprehensibility, readability, and adaptability of survey instructions and data elements, including response options.