Open AccessDevelopment of an Index of Engagement in HIV Care: An Adapted Internet-Based Delphi Process
Author(s) -
Mallory O. Johnson,
Kimberly A. Koester,
Troy Wood,
Torsten B. Neilands,
Jamie L. Pomeranz,
Katerina Christopoulos
Publication year - 2017
Publication title -
jmir research protocols
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.378
H-Index - 9
ISSN - 1929-0748
DOI - 10.2196/resprot.8520
Subject(s) - delphi method , conceptualization , human immunodeficiency virus (hiv) , delphi , the internet , medicine , psychology , nursing , family medicine , computer science , world wide web , artificial intelligence , operating system
Background Improving engagement in medical care among persons living with human immunodeficiency virus (HIV) is critical to optimizing clinical outcomes and reducing onward transmission of HIV. However, a clear conceptualization of what it means to be engaged in HIV care is lacking, and thus efforts to measure and enhance engagement in care are limited. Objective This paper describes the use of a modified online Delphi process of consensus building to solicit input from a range of HIV and non-HIV researchers and providers, and to integrate that input with focus group data conducted with HIV-infected patients. The overarching goal was to generate items for a patient-centered measure of engagement in HIV care for use in future research and clinical practice. Methods We recruited 66 expert panelists from around the United States. Starting with six open-ended questions, we used four rounds of online Delphi data collection in tandem with 12 in-person focus groups with patients and cognitive interviews with 25 patients. Results We recruited 66 expert panelists from around the United States and 64 (97%) were retained for four rounds of data collection. Starting with six open-ended questions, we used four rounds of online Delphi data collection in tandem with 12 in-person focus groups with patients and cognitive interviews with 25 patients. The process resulted in an expansion to 120 topics that were subsequently reduced to 13 candidate items for the planned assessment measure. Conclusions The process was an efficient method of soliciting input from geographically separated and busy experts across a range of disciplines and professional roles with the aim of arriving at a coherent definition of engagement in HIV care and a manageable set of survey items to assess it. Next steps are to validate the utility of the new measure in predicting retention in care, adherence to treatment, and clinical outcomes among patients living with HIV.