Patient and provider priorities for self-reported domains of HIV clinical care

Abstract

We sought to understand how HIV-infected patients, their providers, and HIV care researchers prioritize self-reported domains of clinical care. Participants rank-ordered two lists of domains. A modified Delphi process was used for providers and researchers. Approximately 25% of patients were interviewed to discuss rationale for rank order choices. List 1 included anger, anxiety, depression, fatigue, physical function, pain, and sleep disturbance. List 2 included alcohol abuse, cognitive function, HIV stigma, HIV and treatment symptoms, medication adherence, positive affect, sexual risk behavior, sexual function, social roles, spirituality/meaning of life, and substance abuse. Seventy-four providers, 80 HIV care researchers, and 66 patients participated. Patients ranked context-based domains, such as HIV stigma, more highly than providers, while health behaviors, such as drug or alcohol use, ranked lower. Patients described a need to address wider-context challenges such as HIV stigma in order to positively impact health behaviors. Divergent patient and provider priorities highlight the importance of incorporating views from all stakeholders and suggests the need for a care approach that more effectively addresses contextual barriers to adverse health behaviors.

Keywords: HIV care; HIV-infected patients; patient-based measures; patient-reported outcomes; patient–provider communication.

Figure I. Provider vs. patient rankings, List 1

The median rank is in black, and the box spans the 25th to 75th percentiles. The whiskers define 11/2 times the inter-quartile range; individual observations more extreme than this are indicated with dots.

Figure II

Provider vs. patient rankings, List 2

Figure III

Male vs. female patients, List 1

Figure IV

African American vs. White patients, List 1

Figure V

Patients <5 years since HIV diagnosis vs. providers, List 2