by Roger Pebody

When Americans living with HIV were asked to rank the priority issues to be covered during a routine clinical appointment, they ranked social issues such as stigma and social support far higher than their healthcare providers, who often wanted to focus on substance use. The study by Dr Rob Fredericksen of the University of Washington is published online by AIDS and Behavior.

A total of 206 patients were recruited at five clinics in Birmingham, Alabama; San Diego, California; San Francisco, California; Boston, Massachusetts; Seattle, Washington. Efforts were made to recruit a diverse sample, including cisgender women (30%), transgender women (9%), people aged under 30 (11%) or over 55 (22%), black (33%) and Latino people (28%), individuals poorly engaged in care (25%), people with a detectable viral load (29%), people diagnosed in the past five years (30%) and rural residents (10%).

Qualitative interviews in which 79 patients explained their choices showed that they saw social issues and health behaviours as being closely interconnected, as this man explained:

“If you don’t get over the stigma… none of this matters. The isolation is gonna come in, right? You’re not gonna even care about the symptoms or the treatments. You’re not gonna take care of your medication, you’re gonna start that risky behaviour.”

Abstract

Evidence suggests priorities differ between patients in HIV care and their providers regarding topics most important to address in care. At five U.S. sites, we asked patients and providers to prioritize 25 potential topic areas to address during routine visits, and invited patients to discuss selection rationale. Patients (n = 206) and providers (n = 17) showed high discordance in rank order priorities (X2 (24, 223) = 71.12; p < 0.0001). Patients ranked social domains such as HIV stigma highly; a higher proportion of providers prioritized substance use domains. HIV stigma was a higher priority for patients in care fewer than 6 years (Fisher’s exact p = 0.0062), nonwhite patients (Fisher’s exact p = 0.0114), and younger patients (Fisher’s exact p = 0.0281). Patients’ priorities differed between men and women (X2 (24, 188) = 52.89; p < 0.0001), white race vs. other races (X2 (24, 206) = 48.32; p = 0.0023), and Latinos vs. non-Latinos (X2 (24, 206) = 48.65; p = 0.0021). Interviews (n = 79) revealed perceived impact of social context on health and health behaviors.

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Discussion

PLWH and their providers may have different priorities regarding what broad areas should be addressed in the context of a routine clinic visit. While we found relative concordance between patients and providers on the importance of addressing certain domains [e.g., medication adherence, depression, and HIV-related symptoms], we found that patients prioritized social context-based domains [e.g., HIV stigma, social support] more highly than providers, and providers prioritized addressing behavioral domains, such as substance use, more highly than patients. Many patients felt it important that their health care address the at-times overwhelming context-based problems in their lives, such as anticipated or experienced HIV stigma and its resulting psychosocial impact [22], to meaningfully address adverse health behaviors. Addressing HIV stigma in care was particularly important to those of younger age, people in HIV care > 6 years, and/or people with African-American race or Latino/Latina ethnicity.

Our study highlights an opportunity to acknowledge broad, socially-based root problems such as HIV stigma or lack of social support in order to impact health behaviors and symptoms. For population groups that have been less well-retained in HIV care, such as African-American and younger patients, [23, 24] addressing this priority could promote retention. The question is: how to address such issues in the context of a time-constrained clinic visit with a patient population that often presents with multiple conditions or problems?