142nd APHA Annual Meeting and Exposition

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306181
Patient-centered validation of a new palliative care patient/caregiver questionnaire

142nd APHA Annual Meeting and Exposition (November 15 - November 19, 2014): http://www.apha.org/events-and-meetings/annual
Tuesday, November 18, 2014

Rebecca Baranowski, MEd, MS , ABIM, American Board of Internal Medicine, Philadelphia, PA
Gerald Arnold, PhD, MPH , ABIM, American Board of Internal Medicine, Philadelphia, PA
Magdalena Harrington, PhD , PatientsLikeMe, Inc., Cambridge, MA
Lorna Lynn, MD , Department of Evaluation, Research and Development, American Board of Internal Medicine, Philadelphia, PA
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.

Methods:  The Global Health Scale (GHS) of the Patient Reported Outcomes Measurement System (PROMIS®) was administered as validation criterion for the PCQ. The GHS comprises four domains:  physical health (4 items), mental health (4 items), health status, and participation in social activities. Physical and mental health scores are 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>.1. Domain structure assessment included three steps. Factor number was determined using a disjoint cluster method, repeated with 1000 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; i.e., pain, dyspnea, emotional distress). Correlations indicated patients’ overall rating of their physician was strongly influenced by perceived mental health (.23, p<.0001) and being active socially (.19, p=.005) but  less by perceived physical health (.05, p=.16) or overall health status (.12, p<.56). Validity coefficients were moderate (-.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.        

Conclusions: 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.

Learning Areas:

Biostatistics, economics
Chronic disease management and prevention
Communication and informatics
Implementation of health education strategies, interventions and programs
Social and behavioral sciences

Learning Objectives:
List the health domains covered by the Palliative Care questionnaire. Compare the validity coefficients of patient reported outcome measures derived from the Palliative Care questionnaire to the criterion measures from the PROMIS Global Health Scale. Compare the ratings of healthcare providers from patients with serious chronic conditions to ratings of the same healthcare providers from the patient’s caregivers. Discuss the strengths and weaknesses of patient-centered research in Palliative Care. Evaluate the role of generic, patient reported measures in maintaining certification of physicians in internal medicine.

Keyword(s): Chronic Disease Management and Care, Participatory Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Dr. Gerald Arnold is a statistician with the American Board of Internal Medicine (ABIM) and provides expertise in study design and analysis, biostatistics, probability sampling procedures, and psychometrics. Dr. Arnold research at ABIM have been in the areas of developing quality assessment and sampling methods in medical practice settings, physician performance estimation in complex samples with case-mix and bias adjustments, and psychometric assessment of questionnaires and inventories such as CAHPS surveys.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.