How Do Treatment Priorities Differ Between Patients in HIV Care and Their Providers? A Mixed-Methods Study.

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.

Development and content validation of the Multifactoral assessment of perceived social support (MAPSS), a brief, patient-reported measure of social support for use in HIV care.

Low perceived social support (SS) negatively impacts health outcomes. We developed a measure of perceived SS for use in HIV care. We sought and categorized legacy items, selecting strongest items within categories. We elicited SS concepts from patients in English/Spanish, coded transcripts to match item pool content, and developed new items for salient unrepresented content. In focus groups, patients prioritized highly-matched items. We conducted cognitive interviews on high-priority items, and validity testing on final items against two legacy measures. From interviews (n = 32), we matched the following concepts: sense of belonging/inclusion; communication; emotional support; feeling accepted by others as a person; companionship; and practical support. We identified a new concept: support from friends/family in remaining healthy. Focus groups (n = 23) prioritized emotional support, communication, and support to remain healthy. Cognitive interviews (n = 30) found items were well-understood. The final 8-item measure performed well with patients (n = 708), with good construct validity. We used an Item Response Theory program to create a 3-item Short Form version of the measure, which captures 96% of patients indicating low social support. We developed the Multifactoral Assessment of Perceived Social Support (MAPSS) and Short Form (MAPSS-SF); brief, clinically relevant, sufficiently unidimensional measures of SS for use in HIV care.

Using Patient Perspectives to Inform the Development of a Behavioral Intervention for Chronic Pain in Patients with HIV: A Qualitative Study.

Background: Chronic pain is a common and disabling comorbidity in individuals living with HIV. Behavioral interventions are among the most effective and safe nonpharmacologic treatments for chronic pain. However, the success of a behavioral intervention is influenced by how well it is tailored to the target population's biological, psychological, and social context. Given well-documented psychosocial vulnerabilities among persons with HIV, it is critical to develop a behavioral intervention for chronic pain tailored to this population. Objective: To use qualitative methods to investigate patient preferences for the structure and delivery of a behavioral intervention for chronic pain in individuals with HIV. Methods: Interviews and focus groups were used to elicit participant preferences. A thematic analysis approach, with an initial round of open coding, was used to develop the codebook and analyze the data. Results: Qualitative data from 12 interviews and 3 focus groups with patients living with HIV and chronic pain (total N = 24) were analyzed. Emergent themes fell into four major categories: perceived value of group sessions, incorporating peer leadership, and two key elements of how the intervention should be delivered: the HIV status of group participants and views on phone-delivered intervention content. Discussion: This study provides a framework for the structure and delivery of a behavioral intervention for chronic pain in individuals with HIV based on patient preferences. We will use these results to design our intervention, and hope that our approach informs the work of investigators in other disciplines who seek to incorporate patient preferences during intervention development.

Barriers and facilitators for screening and treatment of hyperlipidemia among patients with inflammatory arthritis.

BACKGROUND: Patients with inflammatory arthritis (IA), defined as rheumatoid arthritis (RA) and psoriatic arthritis (PsA), are at increased risk for cardiovascular disease (CVD). The frequency of screening and treatment of hyperlipidemia, a modifiable CVD risk factor, is low in these patients. The reasons for low screening and treatment rates in this population are poorly understood. Our objective was to elicit the barriers and facilitators for screening and treatment of hyperlipidemia from the perspective of patients with IA. METHODS: We conducted a qualitative study using focus groups of patients with IA, guided by Bandura's Social Cognitive Theory. We recruited patients with IA aged 40 years and older from a single academic center. Data were analyzed thematically. RESULTS: We conducted three focus groups with 17 participants whose mean age was 56 (range 45-81) years; 15 were women. Four themes emerged as barriers: 1) need for more information about arthritis, prognosis, and IA medications prior to discussing additional topics like CVD risk; 2) lack of knowledge about how IA increases CVD risk; 3) lifestyle changes to reduce overall CVD risk rather than medications; and 4) the need to improve doctor-patient communication about IA, medications, and CVD risk. One theme emerged as a facilitator: 5) potential for peer coaches (patients with IA who are trained about concepts of CVD risk and IA) to help overcome barriers to screening and treatment of hyperlipidemia to lower CVD risk. CONCLUSION: Patients with IA identified educational needs about IA, increased CVD risk in IA and the need for improved doctor-patient communication about screening for hyperlipidemia and its treatment. Patients were receptive to working with peer coaches to facilitate achievement of these goals.

Perspectives of Rheumatoid Arthritis Patients on Electronic Communication and Patient-Reported Outcome Data Collection: A Qualitative Study.

OBJECTIVE: To identify the perspectives of patients with rheumatoid arthritis (RA) on electronic recording of between-visit disease activity and other patient-reported outcomes (PROs) and on sharing this information with health care providers or peers. METHODS: Patients with RA were recruited to participate in focus groups from December 2014 to April 2015. The topic guide and analysis were based on the Andersen-Newman framework. Sessions were audiorecorded, transcribed, independently coded, and analyzed for themes. RESULTS: Thirty-one patients participated in 7 focus groups. Their mean ± SD age was 51 ± 13.1 years, 94% were women, 52% were African American, 11% were Hispanic, and 37% were white. Three themes emerged: provider communication, information-seeking about RA, and social and peer support. Participants expressed a willingness to track disease activity data to share with health care providers electronically if providers would act on the information. Participants envisioned symptom tracking and information sharing as a mechanism to relay and obtain reliable information about RA. Participants were also interested in electronic communication between visits if it facilitated learning about symptom management and enhanced opportunities for social support among patients with RA. CONCLUSION: Patients with RA may be amenable to electronic collection and sharing of PRO-type data between clinical encounters if it facilitates communication with health care providers and provides access to reliable information about RA. Providing patients with social support was important for enhancing PROs collection by helping them overcome barriers by using electronic devices and overcome reservations about the value of these data.

Perceptions of HIV Pre-Exposure Prophylaxis Among Young, Black Men Who Have Sex with Men.

We conducted in-depth interviews guided by the Andersen-Newman Health Service Utilization Framework to understand perceptions of pre-exposure prophylaxis (PrEP) with 25 young, black men who have sex with men (YBMSM) in the Southern United States. The mean age of participants was 24 years; 21 were insured; and 18 had a regular source of care. Five major themes emerged: (i) stigma related to being black, gay and living in the South; (ii) lack of discussion in the black community about HIV prevention and sexual health; (iii) stigma related to PrEP; (iv) medical mistrust; and (v) low perceived need to be on PrEP. This study presents formative qualitative work that underscores the need for behavioral interventions to address intersectional stigma and perceptions of risk among YBMSM in the South, so that PrEP is no longer viewed as a drastic step but rather as a routine HIV prevention strategy.