TY - JOUR
T1 - Content validity of Patient-Reported Outcomes Measurement Information System (PROMIS) items in the context of HIV clinical care
AU - Edwards, Todd C.
AU - Fredericksen, Rob J.
AU - Crane, Heidi M.
AU - Crane, Paul K.
AU - Kitahata, Mari M.
AU - Mathews, William C.
AU - Mayer, Kenneth H.
AU - Morales, Leo S.
AU - Mugavero, Michael J.
AU - Solorio, Rosa
AU - Yang, Frances Margaret
AU - Patrick, Donald L.
N1 - Funding Information:
Depression, anxiety, fatigue, and alcohol use are common issues of importance for people living with HIV (PLWH) []. We describe an assessment of PLWH and provider priorities in relation to Patient-Reported Outcomes Measurement Information System (PROMIS) depression, anxiety, fatigue, and alcohol use items in the context of clinical care for PLWH. PROMIS is a multi-year effort funded by the National Institutes of Health to create item banks for assessing patient-reported health areas across diseases and chronic conditions ( www.nihpromis.org ). This research was conducted in a large, heterogeneous sample of PLWH recruited from four Centers for AIDS Research (CFAR) Network of Integrated Clinical Systems (CNICS) clinical sites distributed across the USA. We included Spanish-speaking and racially diverse English-speaking PLWH in the study.
Funding Information:
This research was funded by a cooperative agreement awarded to the University of Washington (Principal Investigators: D Patrick, H Crane, P Crane) from the National Institute of Allergy and Infectious Diseases (NIAID) and National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) (Grant #U01 AR 057954). Support was also provided by the National Institute of Allergy and Infectious Diseases (NIAID) University of Washington Center for AIDS Research (Grant #P30 AI027757) and CNICS (R24 AI067039) and National Institute of Alcohol Abuse and Alcoholism (NIAAA) (ARCH Grants U01 AA020802, U01 AA020793, and U24 AA020801).
Publisher Copyright:
© 2015, Springer International Publishing Switzerland.
PY - 2016/2/1
Y1 - 2016/2/1
N2 - 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.
AB - 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.
KW - Clinical practice
KW - HIV
KW - PROMIS
KW - Patient-centered outcomes
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U2 - 10.1007/s11136-015-1096-2
DO - 10.1007/s11136-015-1096-2
M3 - Article
C2 - 26245710
AN - SCOPUS:84955345480
SN - 0962-9343
VL - 25
SP - 293
EP - 302
JO - Quality of Life Research
JF - Quality of Life Research
IS - 2
ER -