Abstract
Quality of life (QoL) is recognized as an essential end point in the disease management of chronic conditions such as HIV with calls to include good QoL as a 'fourth 90' in the 90-90-90 testing and treatment targets introduced by World Health Organization in 2016. Cognitive impairments impact a broad spectrum of experiences and are a common issue effecting people living with HIV (PLWH). Despite this, few studies have examined QoL in PLWH who also have a cognitive disorder. This study aimed to synthesize and describe what is known about QoL in those living with HIV-associated neurocognitive disorders (HAND). A scoping review of peer-reviewed literature was conducted to identify how QoL has been investigated and measured in PLWH with HAND, and how PLWH with HAND report and describe their QoL. We searched PsychInfo, Medline, Scopus, and Web of Science along with hand-searching reference lists from relevant studies found. Included studies were those published in English after 1st January 2003 which included PLWH with cognitive impairment not due to other pre-existing conditions. Fifteen articles met criteria for inclusion. Two studies measured QoL as a primary aim, with others including QoL assessment as part of a broader battery of outcomes. The MOS-HIV and SF-36 were the most commonly used measures of overall QoL, with findings generally suggestive of poorer overall QoL in PLWH with HAND, compared to PLWH without cognitive impairment. Studies which examined dimensions of QoL focused exclusively on functionality, level of independence, and psychological QoL domains. There is a considerable dearth of research examining QoL in PLWH with HAND. The initiatives which advocate for healthy aging and improved QoL in PLWH must be extended to include and understand the experiences those also living with cognitive impairment. Research is needed to understand the broad experiential impacts of living with these two complex, chronic conditions, to ensure interventions are meaningful to patients and potential benefits are not missed.
Highlights
Worldwide approximately 38 million people live with human immunodeficiency virus (HIV) with 1.7 million new cases seen each year [1]
The results section first describes the study characteristics (Table 2) and details how quality of life (QoL) has been assessed in this population, we describe how people living with HIV (PLWH) with HIV-associated neurocognitive disorders (HAND) report their QoL
The primary aim of the majority of studies was to examine functional deficits associated with HAND, which was assessed via ‘realworld’ functional assessments [24, 31, 32, 47] or through patient-reported outcome measures (PROMs) of functioning [24, 31, 32, 35, 40, 47], with broad QoL assessment or the assessment of a second QoL component an additional secondary aim in some studies [24, 32, 38]
Summary
Worldwide approximately 38 million people live with human immunodeficiency virus (HIV) with 1.7 million new cases seen each year [1]. HIV-associated dementia, which was seen in up to 50% of PLWH in the pre-cART era, is rare, a mild to moderate profile of cognitive impairment impacting quality of life (QoL), medication adherence, and employment is widely reported [2,3,4,5]. Prevalence rates vary depending on definitions of cognitive impairment used, with studies reporting cognitive impairment in as many as 52% of PLWH [8], which may or may not be related to HIV. Those with more stringent definitions estimate that between 14– 28% of PLWH experience these issues [9]. Prevalence of cognitive impairment, is expected to rise as the HIV-population continues to age, whereby the impacts of aging and associated morbidities compound the cognitive vulnerabilities already seen in PLWH
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