Developing and validating a novel health literacy needs assessment tool for people with HIV in the United States

In a two-phase study, we developed and tested a communication-centered health literacy tool (Communicating Care Needs Tool for HIV [CCNT-HIV]) to increase medication adherence among people with HIV through patient-provider communication. In Phase 1, we developed CCNT-HIV by conducting a Delphi panel and cognitive interviews with 14 experts on the subject matter and 12 people with HIV. The Delphi panel recommended considering the complex stigma faced by people with HIV, visual/audio features, and brevity in the tool design. CCNT-HIV was finalized, including 17 items, with original visual aids and voiceover options: Kendall’s coefficient of concordance was .97 (concept areas) and .66 (concept items). In Phase II, we adopted a survey approach to examine and validate CCNT-HIV as a health literacy tool. Explanatory factor analysis revealed that CCNT-HIV has four underlying factors. Correlations among principal components revealed converging (<i>p</i> &lt; .001) and diverging (<i>p</i> &lt; .05) aspects with validity measures. Based on receiver operating characteristic curve analyses, CCNT-HIV identifies people with HIV who need more support (<i>p</i> &lt; .001). CCNT-HIV serves as an applied resource for healthcare professionals to engage people with HIV and to assist in communicating about their need to get and stay in care while facilitating the development of sustainable health literacy.