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Patient-centered validation of a new palliative care patient/caregiver questionnaire.


Baranowski R, Arnold G, Lynn L. — American Board of Internal Medicine

Harrington M. — PatientsLikeMe, Inc.

Presented: American Public Health Association Annual Meeting, November 2014

Objective: This study validated a new patient/caregiver questionnaire developed for assessment of physicians treating chronically or seriously ill patients. The Palliative Care questionnaire (PCQ) assesses physician-patient communication and patient-reported outcomes for pain, dyspnea and emotional distress. Collaboration between ABIM and PatientsLikeMe, an online community for patients to share information for research and support, facilitated patient involvement in improving and validating the instrument.

Method: The Global Health Scale (GHS) of the Patient Reported Outcomes Measurement System (PROMIS®) was administered as validation criterion for the PCQ scores. The GHS comprises four domains: physical health (four items), mental health (four items), health status and participation in social activities. Physical and mental health scores were calibrated into two T-scale measures with means and standard deviations of 50 and 10, respectively. The PCQ was scored and correlated (Spearman correlations) with GHS scores. Salient validity coefficients were correlations with absolute values exceeding r > 0.1. Domain structure assessment included three steps. Factor number was determined using a disjoint cluster method, repeated with 1,000 bootstrap samples. Second, maximum-likelihood factor analysis tested fit. Finally, confirmatory factor analysis estimated factor loadings.

Results: Of 1,140 responses, 1,009 were complete and met age criteria (18–90 years). Factor analysis yielded four domains: quality of physician communication skills when discussing treatment options and patient concerns, and three patient-reported outcome measures (PROMs, including pain, dyspnea and emotional distress). Correlations indicated patients' overall rating of their physician was strongly influenced by perceived mental health (r = 0.23, p < .0001) and being active socially (r =.19, p = .005) but less by perceived physical health (r =.05, p = .16) or overall health status (r = .12, p < .56). Validity coefficients were moderate (rs = -.25 to -.42, p < .0001) and negative; this was expected because larger GHS scores imply better health, while larger PCQ PROM scores represent greater morbidity. Among 170 caregiver responses, 19% felt their role in the patient's care was not understood by the physician. Approximately 46% of caregivers were not asked about concerns related to the patient's medical needs and 60% indicated they were not asked about stress.

Conclusion: This patient-centered research explored physician skills related to providing palliative care for chronic or serious illnesses. The questionnaire assesses physician-patient communication; patient-reported outcomes of pain, dyspnea and emotional distress; and relationships among these outcomes and patient ratings of their physicians. The measures represent the interplay between physician-patient encounters and aspects of patient morbidity and quality of life.

For more information about this presentation, please contact Research@abim.org.