Todd C Edwards1, Rob J Fredericksen2, Heidi M Crane2, Paul K Crane2, Mari M Kitahata2, William C Mathews3, Kenneth H Mayer4, Leo S Morales5, Michael J Mugavero6, Rosa Solorio5, Frances M Yang7, Donald L Patrick5. 1. Department of Health Services, School of Public Health, University of Washington, 1208 NE 43rd St., Seattle, WA, 98195, USA. toddce@uw.edu. 2. Harborview Madison Clinic, School of Medicine, University of Washington, 325 9th Avenue, Seattle, WA, 98104, USA. 3. Owen Clinic, University of California - San Diego, 4168 Front St, San Diego, CA, 92103, USA. 4. The Fenway Institute, School of Public Health, Harvard University, 1340 Boylston Street, Boston, MA, 02215, USA. 5. Department of Health Services, School of Public Health, University of Washington, 1208 NE 43rd St., Seattle, WA, 98195, USA. 6. 1917 Clinic, University of Alabama - Birmingham, 908 20th Street S, Suite 250, Birmingham, AL, 35205, USA. 7. Georgia Regents University, 1459 Laney Walker Blvd, Augusta, GA, 30901, USA.
Abstract
PURPOSE: To assess content validity and patient and provider prioritization of Patient-Reported Outcomes Measurement Information System (PROMIS) depression, anxiety, fatigue, and alcohol use items in the context of clinical care for people living with HIV (PLWH), and to develop and assess new items as needed. METHODS: We conducted concept elicitation interviews (n = 161), item pool matching, prioritization focus groups (n = 227 participants), and cognitive interviews (n = 48) with English-speaking (~75 %) and Spanish-speaking (~25 %) PLWH from clinical sites in Seattle, San Diego, Birmingham, and Boston. For each domain we also conducted item review and prioritization with two HIV provider panels of 3-8 members each. RESULTS: Among items most highly prioritized by PLWH and providers were those that included information regarding personal impacts of the concept being assessed, in addition to severity level. Items that addressed impact were considered most actionable for clinical care. We developed additional items addressing this. For depression we developed items related to suicide and other forms of self-harm, and for all domains we developed items addressing impacts PLWH and/or providers indicated were particularly relevant to clinical care. Across the 4 domains, 16 new items were retained for further psychometric testing. CONCLUSION: PLWH and providers had priorities for what they believed providers should know to provide optimal care for PLWH. Incorporation of these priorities into clinical assessments used in clinical care of PLWH may facilitate patient-centered care.
PURPOSE: To assess content validity and patient and provider prioritization of Patient-Reported Outcomes Measurement Information System (PROMIS) depression, anxiety, fatigue, and alcohol use items in the context of clinical care for people living with HIV (PLWH), and to develop and assess new items as needed. METHODS: We conducted concept elicitation interviews (n = 161), item pool matching, prioritization focus groups (n = 227 participants), and cognitive interviews (n = 48) with English-speaking (~75 %) and Spanish-speaking (~25 %) PLWH from clinical sites in Seattle, San Diego, Birmingham, and Boston. For each domain we also conducted item review and prioritization with two HIV provider panels of 3-8 members each. RESULTS: Among items most highly prioritized by PLWH and providers were those that included information regarding personal impacts of the concept being assessed, in addition to severity level. Items that addressed impact were considered most actionable for clinical care. We developed additional items addressing this. For depression we developed items related to suicide and other forms of self-harm, and for all domains we developed items addressing impacts PLWH and/or providers indicated were particularly relevant to clinical care. Across the 4 domains, 16 new items were retained for further psychometric testing. CONCLUSION: PLWH and providers had priorities for what they believed providers should know to provide optimal care for PLWH. Incorporation of these priorities into clinical assessments used in clinical care of PLWH may facilitate patient-centered care.
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