Towards person‐centred care for people living with HIV: what core outcomes matter, and how might we assess them? A cross‐national multi‐centre qualitative study with key stakeholders

Abstract

Objectives People living with HIV (PLWH) have multidimensional concerns requiring person‐centred care. Routine use of patient‐reported outcome measures (PROMs) improves outcomes. No brief PROM currently reflects the breadth of concerns for PLWH. This study sought to identify priority outcomes for PLWH, model current practice, explore views on introducing PROMs into routine care, and devise a model for person‐centred care incorporating the PROM. Methods A cross‐national multi‐centre study (London, Brighton and Dublin) was carried out. Semi‐structured qualitative interviews with adult PLWH, HIV health care professionals and HIV commissioners (responsible for planning and commissioning services) were performed. Interviews were analysed using thematic and framework analysis. Results PLWH (n = 28), professionals (n = 21) and commissioners (n = 8) described concerns related to living with HIV across six domains: physical (e.g. pain and gastrointestinal symptoms), cognitive (e.g. memory and sleep), psychological (e.g. anxiety and depression), social (e.g. isolation and intimacy), welfare (e.g. finances and fears regarding change of immigration status), and information (e.g. long‐term outcomes) needs. Themes were highly inter‐related, impacting across domains of need (e.g. physical and cognitive problems impacting on psychological and social wellbeing). Perceived benefits of using PROMs in routine HIV care included improved person‐centredness, patient empowerment, fewer missed concerns, increased engagement with services, and informed planning of services. Potential challenges included heterogeneity of PLWH, literacy, and utility for those who struggle to engage with care. Conclusions This study presents a novel model of person‐centred care incorporating an HIV‐specific PROM. The model reflects priorities of key stakeholders. Explicit use of PROMs in routine HIV care could afford benefits for PLWH, clinical teams and commissioners.

Relationship Between Polypharmacy and Quality of Life Among People in 24 Countries Living With HIV

“…Polypharmacy rates among PLHIV, which range from 23% to 39%, are higher than among HIV-negative populations (11)(12)(13)(14)(15). Studies have demonstrated associations between polypharmacy and clinical outcomes, including death (16); however, data are scarce on the relationship between polypharmacy and overall quality of life based on subjective measures of well-being that are important to patients (17,18), including their experiences, concerns, and treatment priorities. To fill these gaps in knowledge, we used pooled data from 24 countries to examine associations between polypharmacy and self-rated overall health and perceptions of treatment needs.…”

Developing a Short-Form Version of the HIV Disability Questionnaire (SF-HDQ) for Use in Clinical Practice: A Rasch Analysis

“…with HIV to articulate their health challenges and needs, facilitate goal-setting, and guide referrals to available services. At the service delivery level, the SF-HDQ may help clinics or community-based organizations to better understand the changing needs of individuals as they age with HIV, evaluate the impact of interventions, programs and models of service delivery, and inform areas of resource allocation for future programming and service provision [68].…”

The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV

“…Despite advances in antiretroviral therapy (ART), people living with HIV have worse health related quality of life than the general population [2], and disproportionate burden of poor mental health [3,4]. Their physical, cognitive, psychological, social, spiritual, welfare and informational needs are highly interrelated, and persisting HIV stigma can reduce access to appropriate support [5]. A holistic approach to HIV treatment and care is needed, focused on the individual, rather than treating symptoms and concerns in isolation.…”

“…Global HIV policy and public health initiatives continue to focus attention on diagnosis, treatment adherence and viral suppression in order to end the HIV/ AIDS epidemic [6]. People living with HIV have long reported that this focus on viral suppression and treatment adherence is reflected within clinical consultations, with a lack of attention or opportunity to discuss needs beyond ART-related concerns [5,7,8]. Care that focuses on what matters to the individual, and is respectful and responsive to their needs, can improve care experiences and health outcomes [9][10][11].…”

“…This article presents the development and initial cognitive testing of a novel, brief, patient-centred PROM (the Positive Outcomes HIV PROM) for use in routine adult HIV care that reflects the range of multidimensional outcomes relevant to people living with HIV to drive and evaluate care. This paper build on a previously reported qualitative study of priority outcomes for people living with HIV [5].…”