Study characteristics on health-related quality of life in older people living with human immunodeficiency virus: A narrative review

Abstract

BACKGROUND

People living with human immunodeficiency virus (HIV) are aging as a result the benefits of combination antiretroviral therapy.

AIM

To provide descriptions of eligible existing studies on demographics, methodologies, and outcome measures related to health-related quality of life (HRQoL) in the context of HIV and aging.

METHODS

The MEDLINE, CINAHL, Scopus, and PsycINFO databases were systematically searched using the terms HIV, age, and HRQoL to find studies published between January 1995 and June 2022. Key variables of the eligible studies were identified and categorized into demographics (e.g., study sites, study year), methodologies (e.g., use of conceptual frameworks, measures used), and outcome measures [e.g., HRQoL, quality of life (QoL)]. The PRISMA 2009 checklist was followed.

RESULTS

A total of 68 published studies involving 53504 participants were included. The majority of the studies (55.88%) were conducted in North America, with relatively few studies conducted in Africa. The median age of participants was 51.0 years (IQR = 11.0). Over one-third (32.56%) of all participants were older people living with HIV aged 50 years and older Four studies included only older female participants, and six studies included only men who have sex with men. Outcome measures were assessed as HRQoL (26.47%) or QoL (36.76%). Overall, data from African studies, older women living with HIV, socioeconomic status (e.g., employment, income, education), sexual behavioral risks, theoretical frameworks used, and follow-up studies were limited.

CONCLUSION

This narrative review highlights imbalances and gaps in research on HRQoL in the context of HIV and aging, providing direction for future studies in this area.

Key Words: Human immunodeficiency virus; Aging; Older age; Health-related quality of life; Quality of life; Africa; People living with human immunodeficiency virus; Narrative review.

Core Tip: This narrative review aims to identify gaps in current studies on health-related quality of life in the context of human immunodeficiency virus and aging. It focuses on demographics, methodologies, and outcomes to provide a comprehensive understanding of existing research gaps for future studies in this area. The review reveals imbalances and limitations including study locations, demographics, sample sizes, utilization of conceptual frameworks, measuring instruments, and determinants associated with outcomes.

INTRODUCTION

Since its discovery in 1981, the human immunodeficiency virus (HIV) has evolved into a chronic disease, thanks to the benefits of combination antiretroviral therapy (cART). This transformation allows people living with HIV to live longer than ever before[1], resulting in a growing number of older people living with HIV worldwide[2]. Older people living with HIV are typically individuals aged 50 years and older[3-5].

While the overall life expectancy of people living with HIV remains shorter than that of the general population[1], they still aspire to live HIV-free. Unfortunately, there are limited options available to halt disease progression[6], alleviate the effects of certain debilitating symptoms[7], eradicate HIV reservoirs in the body[8], and slow down the aging process in relation to HIV[9].

Despite these challenges, older people living with HIV are continuously improving their functioning[10], coping with psycho-cognitive behaviors[11], and promoting successful aging with HIV[12].

Health-related quality of life (HRQoL) is particularly important for older people living with HIV, especially when the therapeutic goal extends beyond cure[4,13,14]. HRQoL has gained recognition among researchers and clinicians as a multidimensional concept that encompasses not only an individual's perceived physical and mental health but also broader aspects of life[15]. The concept of HRQoL assesses various aspects that differ from the broad concept of quality of life (QoL), including objective self-perceived health and evaluating essential daily activities of people living with HIV, specifically known as physical functioning (e.g., bathing, cooking, exercise), role functioning (e.g., responsibilities, decision making), and social functioning (e.g., interactions, relationships), as well as well-being.

Since the spread of HIV, studies have examined HRQoL, but findings remain limited to older individuals within this population. Therefore, this narrative review aims to provide descriptions of eligible existing studies on demographics, methodology, and outcome measures related to HRQoL in the context of HIV and aging. Findings from this narrative review highlight gaps and provide new directions for future research in this area.

MATERIALS AND METHODS

Four databases, including MEDLINE, CINAHL, Scopus, and PsycINFO, were systematically searched for articles published between January 1995 and June 2022. The search terms included HIV (i.e., HIV-1 OR human immunodeficiency virus OR HIV infection OR AIDS OR acquired immunodeficiency syndrome) AND age (i.e., age OR aging OR ageing OR senior* OR elderly OR older adult* OR longevity OR lifespan* OR geriatric OR successful aging) AND HRQoL (i.e., health-related quality of life OR HRQoL OR quality of life OR QoL OR well-being). Other search terms such as food, shelter, and basic needs were used for different purposes. The search was limited to the English language and studies involving humans. A librarian at the University of Toronto was consulted for the search terms before conducting this study.

To be included in the final analysis, studies had to have a sample (or subsample) of people living with HIV aged 50 years or older (or had a mean age of 50 years and older[16-19]), and an outcome that utilized an objective measure to assess HRQoL (as well as physical-HRQoL, mental-HRQoL), or QoL, pertaining to the context of older age (i.e., 50 years and older). The definition of “older” age for people living with HIV is based on clinical outcomes showing that these individuals experience faster health deterioration, even with the use of cART, compared to those without HIV[20,21]. On the other hand, community experts such as the World Health Organization, UNAIDS, and other international researchers have agreed and commonly recognized that the population of older people living with HIV is growing globally due to the benefits of cART. Nevertheless, this population necessitates unique multi-disciplinary care approaches from various disciplines[22,23].

Studies were excluded if they were not original research (e.g., reviews, letters, correspondence, or opinions), had small sample sizes (e.g., case reports, pilot studies, qualitative reports, or focus group studies), or were considered grey literature. Figure 1 displays the narrative review process.

Figure 1 Flow chart for data screening in the narrative review. HIV: Human immunodeficiency virus.

Data extraction and analyses

Variables from the eligible studies were identified and categorized into three main groups: Study demographics (such as age, sex, and sexual orientation), study methods (such as the use of conceptual frameworks, measurement tools, and study designs), and study outcomes, which included HRQoL, physical-HRQoL, and mental-HRQoL or QoL. Other categorical variables including HIV-related factors, age-related conditions, and basic living needs were also considered for further analysis of outcomes.

All variables were entered into a spreadsheet and analyzed using SAS^© OnDemand for Academics 2021 by SAS Institute Inc. Frequencies and proportions were used for categorical variables, while measures of central tendency, such as mean, median, or standard deviation (SD), were also used when appropriate.

RESULTS

The narrative review included 68 eligible articles published between January 1995 and June 2022. A detailed description of these studies can be found in Table 1.

Table 1 Summaries of study characteristics on health-related quality of life in older people living with human immunodeficiency virus including the narrative review.

Study	Demographics			Methods		Outcomes1
	Ref.	Sample (Female, %)	Age groups (Number of the sample)	Objectives	Study design; Conceptual framework; Terminology; Instrument	HRQoL; QoL; PHS; MHS
1	Piette et al[24], the United States	369 (15.2)	< 30 (88); 30-39 (192); 40-49 (71); 50+ (18) 4.9%	Examined the impact of age on QoL (independent of HIV stage and symptoms)	CSS; NA; QoL; MOS-HIV (20 items)	QoL (PF, RF, SF, mental health, health perceptions, and pain subscales)
2	Crystal et al[104], the United States	2836 (29.5)	18-29 (376); 30-39 (1171); 40-49 (1007); 50+ (282) 9.9%	Characterized adults with HIV's physical and role limitations	CSS; NA; NA; SF-21	Other (9-item), RF (2-item)
3	Hays et al[56], the United States	2864 represented 231400 (23.0)	18-29 (29540); 30-34 (49562); 35-39 (54956); 40-44 (43812); 45-49 (27105); 50+ (26438) 11%	Measured HIV patients' HRQoL in comparison to those with other comorbidities	CSS; NA; HRQoL; SF-36	PHS, MHS
4	Kalichman et al[50], the United States	113 (24.8)	45+ (45-54) 66%	Evaluated suicidal thoughts among mid-age and older persons with HIV	CSS; NA; HRQoL; FAHI-55	HRQoL (physical well-being, emotional well-being, and functional well-being, and provider relationship)
5	Campsmith et al[105], the United States	3778 (26.5)	18-29 (605); 30-39 (1783); 40-49 (1055); 50+ (335) 8.9%	Described levels of HRQoL in different demographic and behavioral risk factor groups	CSS; NA; HRQoL; MOS	HRQoL (PF, RF, SF, CF, mental health, overall health, pain, and energy/fatigue)
6	Crystal et al[35], the United States	2857 (Non-heterosexual men, injection drug users & others)	< 50 (2573); 50+ (284) 9.9%	Provided a national profile of socioeconomic circumstances of the mid-aged and older populations with HIV	CSS; NA; QoL; QoL Indicators	QoL (overall QoL, GH, PF, RF, SF, emotional well-being)
7	Lyons et al[37], Australia	693 (Non-heterosexual men)	18-35 (101); 36-50 (394); 50+ (198) 28.6%	Explored the health and psychological well-being of older Non-heterosexual Australians men with HIV compared with mid- and younger age	CSS; NA; Well-being; Not specific	Other (Physical health, mental health, psychological well-being)
8	Nokes et al[40], the United States (plus other four countries)	1217 (31.4)	< 50 (964); 50+ (232) 19.1%	Evaluated whether the chronological age affects symptom status and HRQoL in adults living with HIV	CSS; Wilson and Cleary; HRQoL; HAT-QoL-34	HRQoL (overall function, life satisfaction, health worries, financial worries, medication concerns, HIV mastery, disclosure worries, provider trust, and sexual function)
9	Pereira et al[41], Portuguese	1191 (32.6)	< 34 (305); 35-44 (558); > 45 (328) 27.5%	Determined gender and age differences on the QoL domains in Portuguese HIV-infected individuals	CSS; NA; QoL; WHOQOL-HIV-BREF	QoL (physical, level of independence, social, environmental, spirituality & psychological subscales)
10	Shan et al[106], China	1009 (56.4)	< 40 (351); 40-49 (444); 50+ (214) 21.2%	Evaluated the QoL and related factors in HIV-positive spouses from serodiscordant couples under antiretroviral therapy	CSS; NA; QoL; WHOQOL-HIV-BREF (China version)	QoL (physical, social, environmental & psychological domains)
11	Balderson et al[107], the United States	452 (27.7)	50-54 (265); 55-59 (129); 60+ (58)	Assessed the relationship of comorbid chronic illnesses to physical, social, and mental health functioning in a nine-state community sample of HIV-positive older adults	CSS; NA; QoL; SF-36 (3 subscales)	QoL (PF, SF, mental health subscales)
12	Doyle et al[108], the United States	113 (17.7)	< 40 (41); 50+ (72) 63.7%	Investigated the association between prospective memory and HRQoL by age group	CSS; NA; HRQoL; SF-36 (8 subscales)	PHS, MHS
13	Lyons et al[38], Australia	189 (Non-heterosexual men)	40-44 (54); 45-49 (57); 50-54 (39); 55+ (39)	Examined differences in physical and mental health between HIV-positive and HIV-negative non-heterosexual men across age groups	CSS; NA; Well-being; K10 of psychological distress	Other (mental health condition)
14	Morgan et al[31], the United States	92 (18.5)	< 40 (31); 50+ (61) 66.3%	Determined whether HIV infection and aging act synergistically to disrupt everyday functioning, compared between HIV-positive and HIV-negative individuals	CSS; None; HRQoL; SF-36 (8 subscales)	PHS, MHS (physical well-being, mental well-being) plus Instrumental Activity of Daily Living (IADL)/Basic Activities of Daily Living (BADL)
15	Nyirenda et al[66], South Africa	203 (NA)	50-59 (136); 60-69 (55); 70+(12)	Examined correlates of health and well-being in HIV-positive older people compared to HIV-negative peers in rural South Africa	CSS; NA; QoL; WHOQOL-HIV BREF	PHS, MHS (functional ability, QoL/subjective well-being & health state subscales)
16	Skevington et al[42], Multi-countries	2089 (37.0)	<40 (1689); 40+ (403) 19%	Investigated QoL in persons living with HIV using multicultural countries data [p. 1220]	CSS; NA; QoL; WHOQOL-HIV BREF	QoL (physical, social, psychological, independence, environment & spiritual domains)
17	Emlet et al[49], the United States	226 (Non-heterosexual men)	50-86	Identified risk and protective factors associated with physical- and mental-HRQoL in non-heterosexual men living with HIV	CSS; Resilient theory; HRQoL; SF-36 (8 subscales)	PHS, MHS
18	Gard et al[45], Rwanda	705 (100.0)	< 30 (158); 30-40 (389); 41+ (158) 22.4%	Examined the association between HIV disease progression and HRQoL among Rwandan women who were HIV-positive compared to HIV-negative women	CSS; NA; HRQoL; SF-12 (8 items)	HRQoL (PF, RF, SF, CF, pain, emotional well-being, health perceptions & QoL subscales)
19	Rodriguez-Penney et al[109], the United States	141 (32.4)	≤ 40 (50); 50+ (91) 64.5%	Characterized the association between comorbidity burdens and HRQoL in both younger and older adults living with HIV	CSS; NA; HRQoL; SF-36 (8 subscales)	PHS, MHS
20	Slater et al[32], the United States	60 (Non-heterosexual men)	50-65 (100)	Explored the relationships among age, race, SES, social support, and social stigma in QoL	CSS; NA; QoL; HAT-QoL (34 items)	QoL
21	Douab et al[28], France	4339 (NA)	18-29 (260); 30-39 (1175); 40-49 (1593); 50+ (1308) 59%	Determined and compared the levels and patterns of correlates of HRQoL in adults living with HIV in the cohort of 8-year follow-up	Follow-up study (FUS); NA; HRQoL; SF-36 & SF-12	PHS, MHS (SF-36 & SF-12)
22	Moore et al[110], the United States	177 (16.4)	≤ 40 (40); 50+ (60)	Determined the relationship of successful cognitive aging to mental- and physical-HRQoL	CSS; NA; HRQoL; SF-36	PHS, MHS
23	Allshouse et al[111], the United States	359 (15.3)	45+ (359)	Determined the impact of self-reported marijuana use on successful aging	CSS; NA; HRQoL/QoL; SF-36	QoL (all domains)
24	Fang et al[68], the United States	299 (32.4)	50+ (100)	Tested the role of resilience as a mediator between life stress and HRQoL	CSS; NA; HRQoL; Revised FAHI QoL (physical, emotional, social, functional/global, and cognitive functioning well-being)	QoL (physical well-beingemotional well-being, functional/global well-being, social well-being, & cognitive functioning)
25	Fumaz et al[64], Spain	151 (42.4)	45+ (151)	Evaluated resilience, perception of aging, coping strategies, and QoL	CSS; NA; QoL; Nottingham Health Profile (NHP)	QoL (pain, energy, sleep, physical mobility, emotion reactions, social isolation, occupation, life affected by housework, family life)
26	Lifson et al[112], Multi-countries	4119 (22.9)	< 30 (29); 30-39 (34); 40-49 (25); 50+ (11)	Reported results of QoL assessments	CSS; NA; QoL; SF-12	QoL
27	Mekuria et al[78], the Netherlands	664 (63.6)	≤ 37 (362); > 37 (299)	Investigated the level of HRQo with associated predictors	CSS; NA; HRQoL; WHOQOL-HIV BREF	HRQoL (physical, social, psychological, spiritual, environment & independence domains)
28	Okuno et al[60], Brazil	201 (36.3)	50+ (201)	Evaluated QoL and its connections to socioeconomic profile, sexual knowledge, and sexual attitudes	CSS; NA; QoL; HAT-QoL (34 items)	QoL (overall function, life satisfaction, health worries, financial worries, medication worries, HIV mastery, disclosure worries, provider trust & sexual function)
29	Slater et al[33], the United States	60 (Non-heterosexual men)	50-65 (60)	Explored the relationships among social stigma, SES variables, social support, coping, and QoL	CSS; NA; QoL; HAT-QoL (34 items)	QoL
30	Brown et al[29], the United Kingdom	92 (18.5)	32+ (92)	Evaluated rehabilitation interventions (referrals, adherence & outcomes)	FUS; Self- management programme; HRQoL; FAHI	QoL (physical well-being, emotional well-being, functional well-being, social well-being, & cognitive functioning)
31	Ezeamama et al[53], Uganda	400 (69.3)	≤ 25 (57); 26-35 (144); 36-45 (142); 46+ (57) 14.3%	Evaluated perceived social standing (PSS) as a determinant of health outcomes	FUS; Perceived social standing (PSS); QoL; MOS-HIV	QoL
32	George et al[51], Ireland	521 (30.7)	< 50 (447); 50+ (74) 14%	Assessed HRQoL and its associations with socioeconomic, behavioural, clinical, nutrition-related factors, and social support	CSS; Wilson-Cleary; HRQoL; MOS-HIV (35 items)	PHS, MHS
33	Monteiro et al[67], Portugal	1194 (32.5)	< 50 (1015); 50+ (179) 15%	Examined age-related differences in QoL, and the association between sociodemographics, HIV-related variables, depressive symptoms, and QoL domains	CSS; NA; QoL; WHOQOL-HIV BREF (31 items)	QoL (physical, psychological, level of independence, social relationships, environment & spirituality)
34	Catalan et al[25], the United Kingdom	100 (27.0)	50+ (100)	Examined self-reported QoL, social supports, and mental health	CSS; NA; QoL; WHOQOL-HIV BREF	QoL (physical, psychological, level of independence, social relationships, environment, spirituality & total QoL)
35	Emlet et al[48], the United States	335 (Non-heterosexual men)	50+ (100)	Examined how HIV-related factors, adverse conditions, psychosocial characteristics, and their associations with resilience and mastery	CSS; NA; HRQoL; WHOQOL-HIV BREF	Other (psychological domain)
36	Emuren et al[61], the United States	1668 (7.0)	18+ (1668)	Determined the factors associated with HRQoL	FUS; NA; HRQoL; SF-36	PHS, MHS
37	Majeed et al[30], the United States	65 (36.9)	45+ (65)	Examined the relationship between basic psychological needs, depression, and QoL	CSS; Barron and Kenny Mediation; QoL; SF-36	QoL (all domains)
38	McGowan et al[39], the United Kingdom	3258 (19.6)	< 30 (172); 30-39 (745); 40-49 (1370); 50-59 (689) 21.6%; 60+ (214) 6.7%	Assessed the association of age with the prevalence of: Physical symptoms, depression or anxiety, and health-related functions, taking into account time since HIV diagnosis	CSS; NA; QoL; EuroQoL-5D-3 L	HRQoL (health-related functions of mobility, self-care & daily activities)
39	Millar et al[54], the United States	114 (32.5)	50+ (114)	Examined the associations between physical health, psychological health, overall health, and substance use	CSS; Biopsychosocial model; QoL; MOS-HIV (35 item)	QoL (all subscales)
40	Venturini et al[26], Italy	943 (34.1)	≤ 40 (114); 40-50 (364); 50-60 (376) 38.6%; 60+ (121) 12.8%	Assessed HRQoL of HIV-infected people	CSS; NA; HRQoL; EuroQoL-5D-3 L	HRQoL (mobility, self-care, usual activities, pain & anxiety/depression dimensions)
41	Vincent et al[71], the United States	299 (31.8)	50+ (100)	Investigated how HIV-related shame is associated with HRQoL	CSS; NA; HRQoL; FAHI (47 items)	HRQoL (physical well-being, emotional well-being & social well-being)
42	Yeoh et al[34], Australia	80 (NA)	50+ (100)	Assessed the frailty index in relation to QoL in older HIV-positive	CSS; NA; QoL; SF-36	QoL (all domains)
43	Biraguma et al[82], Rwanda	794 (64.6)	18-30 (240); 31-40 (245); 41-45 (204); 50+ (105) 13.2%	Determined the association between HRQoL and behavioural and biological risk factors	CSS; NA; HRQoL; MOS-HIV (35 items)	PHS, MHS
44	Ferreira et al[58], Brazil	226 (48.2)	< 40 (82); 40-49 (72); 50-59 (56) 24.8%; 60+ (16) 7%	Evaluated QoL and its predictors	CSS; NA; QoL; WHOQOL-HIV BREF	QoL (physical, psychological, independence, social relation, environment & spirituality dimensions)
45	Greene et al[65], the United States	356 (15.0)	50+ (356)	Determined the association of loneliness with functional impairment and HRQoL	CSS; NA; HRQoL; Patient Health Questionnaire	HRQoL
46	Nguyen et al[113], the United States	176 (25.0)	50+ (176)	Examined the relationship between risk/protective factors and Self-reported Health Status (SHHS) and Healthy Days Index (HDI)	CSS; NA; HRQoL; SRHS/HDI	HRQoL
47	Xu et al[43], China	197 (28.4)	50+ (197)	Assessed the interrelationship among resilience, coping, family, support, and QoL	CSS; NA; QoL; Chinese QoL scale (6 items)	QoL (Physical health, psychological health, economic circumstance, work/housework, family relationships & non-family relationships)
48	Castro et al[114], Brazil	1480 (35.3)	<30 (187); 30-39 (395); 40-59 (777); 60+ (121) 8.2%	Assessed HRQoL and its associated factors	CSS; NA; HRQoL/QoL; EuroQoL-5D-3 L	HRQoL
49	Fuster-RuizdeApodaca et al[69], Spain	467 (26.6)	≤ 49 (146); 50+ (229) 48.6%	Evaluated the influence of patient experience on HRQoL	CSS; NA; HRQoL; EuroQoL-5D-3 L /self-rate of health (EQ-VAS)	HRQoL
50	Jang et al[36], the United States	614 (3.3)	< 50 (307); 50+ (307) 50%	Assessed the relationship between QoL, age, and other demographic and clinical factors	CSS; NA; QoL; SF-12	HRQoL
51	Olson et al[115], the United States	296 (32.4)	50+ (296)	Assessed associations among physical symptoms, HIV-related health status, depressive symptoms, and HRQoL	CSS; NA; HRQoL; FAHI (47 items)	HRQoL (physical well-being, emotional well-being, social well-being, functional/global well-being, and cognitive functioning)
52	Rooney et al[116], the United States	122 (16.4)	36-45 (39); 46-55 (43); 56-65 (40) 32.8%	Assessed the relationship between depressive symptoms and other psychological factors across age decades	CSS; NA; HRQoL; SF-36	PHS, MHS
53	Tierney et al[63], the United States	12 (15.1)	≤ 40 (83); 50+ (109) 56.8%	Examined the effects of age on the expression of motor signs in people living with HIV	FUS; NA; QoL; SF-36	HRQoL
54	Xiao et al[117], China	522 (55.2)	< 45 (192); 45-54 (182); 55+ (148) 28.4%	Evaluated physical- and mental-HRQoL of people living with HIV in rural China, and the relationship between HRQoL and individual and family level factors	CSS; NA; HRQoL; MOS-HIV (35 items)	PHS, MHS
55	Brañas et al[59], Multi-countries	1126 (25.2)	50+ (1126)	Evaluated differences between older women and men (50+) with HIV in HIV variables, comorbidities, physical functions, and QOL	CSS; NA; QoL; EuroQoL-5D-3 L	QoL
56	Drewes et al[55], Germany	48 (12.3)	50-59 (541); 60-69 (158); 70+ (49)	Analyzed the role of SES as a predictor of health outcomes and HRQoL among people aging with HIV	CSS; NA; HRQoL; SF-12 (German version)	PHS, MHS
57	Ellis et al[16], the United States	78 (17.9)	Mean age = 55.3	Evaluated the impact of inflammation in aging people living with HIV on depressed mood	FUS; NA; QoL; MOS-HIV (35 items)	QoL
58	Fazeli et al[57], the United States	174 (38.0)	< 50 (71); 50+ (103) 59%	Determined the frequency and clinical correlates of successful functional aging (SFA)	CSS; NA; HRQoL; MOS-HIV (35 items)	PHS, MHS
59	Harris et al[18], Canada	834 (15.2)	Mean age = 53	Estimated the extent to which loneliness has associations with brain health, general health outcomes, and QoL among mid-aged and older HIV adults	CSS; Wilson & Cleary; HRQoL/QoL; EuroQoL-5D-3 L /SF-6/ WHOQOL-HIV BREF	Other (EuroQoL-5D-3 L /SF-6) & QoL (WHOQOL-HIV BREF)
60	Mayo et al[70], Canada	707 (NA)	35-44 (99); 45-54 (328); 55-59 (123) 17.4%; 60-81 (153) 21.6%	Estimated the extent to which HIV-related variables, cognition, and other brain health factors interrelate with other HIV-associated symptoms to influence function, health perception, and QoL in older HIV men	CSS; Wilson & Cleary; Biopsychosocial; QoL; EuroQoL-5D-3 L/SF-36/WHOQOL-HIV BREF	PHS, MHS
61	Parish et al[47], the United States	1526 (100.0)	≤ 50 (723); 50+ (803) 52.6%	Examined how having unmet dental needs, as well as other demographics, behavioural, and clinical variables, affects the oral HRQoL	CSS; NA; HRQoL (oral-HRQoL)	Other
62	Rubtsova et al[19], the United States	63 (38.1)	Mean age = 50.1	Examined the independent effects of neurocognitive impairment (NCI) and frailty on HRQoL	CSS; NA; HRQoL; SF-36	PHS, MHS
63	Musumari et al[62], Thailand	327 (61.2)	50-54 (119); 55-59 (121); 60-64 (70); 65+ (42)	Determined predictors of change in HRQoL over time among older HIV adults	FUS; NA; HRQoL; MOS-HIV (35 items)	PHS, MHS
64	Patel et al[27], the United States	41 (39.0)	45+ (41)	Determined the effects of mood disturbances, cognitive and motor symptoms on activities of daily living (ADLs) and QoL in older people living with HIV	CSS; NA; QoL; SF-12	QoL
65	Cabrera et al[44], Peru	175 (100.0)	45+ (175)	Examined HRQoL among a group of mid-aged and older women	CSS; NA; HRQoL; SF-36	PHS, MHS
66	Guaraldi et al[17], Italy	575 (NA)	Mean age = 54.8	Characterized resilience (frailty-resilience phenotypes), which affect HRQoL in people living with HIV	CSS; NA; HRQoL; EuroQoL-5D-3 L /SF-36	HRQoL
67	Okhai et al[46], the United Kingdom	813 (100.0)	45-49 (382); 50-54 (291) 35.8%; 55-59 (88) 10.8%	Evaluated HRQoL in a sample of PLHW women aged 45-60 years	CSS; NA; HRQoL; EuroQoL-5D-3 L	HRQoL
68	Pope et al[118], the United States	261 (35.6)	39+ (261)	Assessed the association between perceived transportation needs and contributors with health outcomes and HRQoL	CSS; NA; HRQoL; MOS-HIV (35 items)	HRQoL (GH, pain, SF, HD, health transitions subscales)

¹Measuring as a subscale, total scores, or summary scores. CSS: Cross-sectional study; CF: Cognitive functioning; EuroQoL-5D-3 L: European QoL 5-Dimension 3-level version; FAHIQoL: Functional Assessment of HIV Infection Quality of Life; FUS: Follow-up study; GH: General Health; HAT-QoL: HIV/AIDS-target quality of life; HD: Health Distress; HDI: Healthy Days Index; HRQoL: Health-related quality of life; MHS: Mental-HRQoL summary; MOS-HIV: Medical Outcomes Study HIV Health Survey; NA: Not available; PF: Physical functioning; PHS: Physical-HRQoL summary; QoL: Quality of life; RF: Role functioning; SES: Socioeconomic status; SF survey: Short form survey; SF: Social functioning; SHHS: Self-reported Health Status; The EQ-VAS: EuroQol Visual Analogue Scale.

Study demographic patterns

Table 2 provides a summary of the demographic patterns reported in the studies.

Table 2 Demographics of eligible studies reported in the narrative review (n = 68), excluding two studies[80,81].

Studies	Mean/median/n (SD/IQR/%)	Number of reported studies (%)
Total participants	53504	68
Sample of older participants (100 or less)	-	12 (22.64)
Median age, years	51.0 (11.0)	59
Age group1
Younger age (< 50 years)	31519 (67.44)	53
Older age (≥ 50 years)	15216 (32.56)	53
Sex1
Female	15338 (31.75)	62
Male	32965 (68.25)	62
Race1
White	14126 (43.95)	46
Black	11805 (36.73)	33
Other	6210 (19.32)	33
Education levels1
High school or less	25257 (59.47)	41
College (some years) or higher	17212 (40.53)	36
Employed1
Yes	7175	19
Risk of exposures1
Homosexual	12706 (53.62)	25
Drug use	6387 (26.96)	17
Heterosexual	4075 (17.20)	14
HIV status1
Median time (years) since known HIV diagnosis	17.0 (10.0)	32
Median current CD4 T-cells	618 (74)	17
Median lowest CD4 T-cells	245 (202)	12
A history of AIDS diagnosis	5,259	17
Mean summary scores of MOS-HIV
Physical-HRQoL	53.85 (9.43)	13
Mental-HRQoL	51.54 (9.81)	13
Studies included only2
Older people	6289 (41.33)	21
Older females	1966 (12.82)	4
Older non-heterosexual individuals	910 (60.60)	6
Study years
1995-2010	-	7 (10.29)
2011-2015	-	22 (32.25)
2016-2020	-	33 (48.53)
2021-2022	-	6 (8.82)
Study places
North America region	-	38 (55.88)
Europe region	-	13 (19.12)
Others	-	17 (25.00)

¹Percentages presented between a numerator and denominator of a corresponding variable.

²Percentages presented between a numerator and denominator of all older, female, or homosexual samples in the reported studies.

IQR: Interquartile range; SD: Standard deviation; MOS-HIV: Medical Outcomes Study HIV Health Survey; HRQoL: Health-related quality of life.

Study sites: The first publication was in 1995[24]. Most studies were published between 2011 and 2016, with 32.25% in 2011-2015, and 48.53% in 2016-2020. Ten studies were published in 2017 alone. North America had the highest number of publications (n = 38), followed by Europe (n = 13). The United States had the highest number of publications (n = 33), followed by the United Kingdom (n = 4), Australia, Brazil, China (each, n = 3), Canada, Italy, Portugal, Rwanda, and Spain (each, n = 2).

Samples: A total of 53504 participants were included in this narrative review. The median age of participants across 59 reported studies was 51.0 years (IQR = 11.0). The median time since known HIV diagnosis was 17.0 years (IQR = 10.0), as reported in 32 studies. The shortest time since knowing HIV diagnosis was 1 year[25], and the longest time was 36 years[26].

The smallest number of participants was 41[27], while the largest number was 4339[28], resulting in a sample size of 357 (IQR = 714) for each study. Ten studies (14.71%) included older participants of 100 or fewer[16,19,25,27,29-34].

More than one-third of participants (31.75%) were female. White race was reported in 43.95% and black race was reported in 36.73% of participants in 46 and 33 studies, respectively.

Forty-one studies reported on education levels, with older participants holding a college degree found in nine studies[35-43]. Employment status was reported in 19 studies, with older employed participants found in five studies[34,36,38,39,41].

Among the studies that reported risk exposures, non-heterosexual individuals, including men who have sex with men or bisexual individuals were found in 25 studies, while injection drug use was found in 17 studies.

Older people living with HIV: In 53 studies, over one-third (32.56%) of participants were individuals aged 50 years and older, while the remaining (67.44%) were under 50 years of age. A total of 6289 older participants were from 21 studies that focused solely on older individuals, accounting for 41.33% of all older participants in this narrative review.

Twelve studies (22.64%) had a sample size of 100 or fewer older participants, as reported in the 53 studies. The study with the smallest sample of older people living with HIV (n = 18) was conducted by Piette et al[24].

Regarding older women, a total of 1966 participants were included in four studies that exclusively featured female participants[44-47]. As for older men who have sex with men or bisexual participants, 918 participants were from six studies that exclusively focused on non-heterosexual participants[32,33,37,38,48,49].

Study methodological patterns

Table 3 presents a summary of the study methodological patterns observed in the narrative review.

Table 3 Methods of eligible studies reported in the narrative review (n = 68).

Studies	Number of studies (%)	P value1
Age cut-off
Cut-off of 50	50 (73.53)	0.0001
Other	10 (14.71)
Not available	8 (11.76)
Terminology use
HRQoL	33 (48.53)	NS
QoL	26 (38.24)
HRQoL or QoL	3 (4.41)
Well-being	2 (2.94)
Other	4 (5.88)
Conceptual/Theoretical frameworks used
Wilson and Cleary	3 (4.41)	< 0.0001
Other	9 (13.24)
None	56 (82.35)
Instrument use
MOS-HIV	10 (14.71)	< 0.0001
SF survey	20 (29.41)
WHOQOL-HIV BREF	9 (13.24)
FAHI QoL	5 (7.35)
EuroQoL-5D-3 L	5 (7.35)
HAT-QoL	4 (5.88)
Others	15 (22.06)
Study designs
Cross-sectional study	61 (89.71)	< 0.0001
Follow-up study	7 (10.29)
Statistical modeling tests
Linear regression model	41 (60.29)	NS
Logistic regression model	9 (13.24)
Structural equation model	6 (8.82)
Hierarchical regression model	4 (5.88)
Other	8 (11.76)
Outcome measures
HRQoL	18 (26.47)	0.029
Physical-HRQoL or mental-HRQoL	19 (27.94)
QoL	25 (36.76)
Other	6 (8.82)

¹Two-sided binomials for one sample.

EuroQoL-5D-3 L: European QoL 5-Dimension 3-Level version; FAHIQoL: Functional Assessment of HIV Infection Quality of Life; HAT-QoL: HIV/AIDS-target quality of life; HRQoL: Health-related Quality of Life; MOS-HIV: Medical Outcomes Study HIV Health Survey; QoL: Quality of life; SF survey: Short form survey; WHOQOL-HIV BREF: World Health Organization Quality of Life brief; NS: Not significant.

Age cut-off of 50 years: In many studies (73.53%), the age cut-off of 50 years was used for subsamples, while the remaining studies utilized different age cut-offs. Additionally, some studies, like Skevington et al[42], used age 40 as the cut-off for old age. As reported in a study by Kalichman et al[50], 66.0% (n = 75) of their total sample were patients aged 45 to 54 years.

Terminology and theoretical frameworks used: In this narrative review, the most commonly noted terminology was HRQoL (48.53%), followed by QoL terminology (38.24%) and well-being (2.94%).

The majority of studies (82.35%) did not use a framework to assess HRQoL or QoL. However, three studies[18,40,51] utilized the Wilson and Cleary conceptual model[52].

With respect to conceptual or theoretical models, eight studies used others. Specifically, Slater et al[32,33] used the stress, appraisal, and coping theory developed by Lazarus and Folkman in 1984. Emlet et al[49] used the resilience theory developed by Masten, Best, and Garmezy in 2008. Brown et al[29] used the self-management program. Ezeamama et al[53] used the conceptual model of perceived social standing. Majeed et al[30] used the mediation conceptual model developed by Baron and Kenny in 1986. Millar et al[54] used the biopsychosocial model. Xu et al[43] used the relational pathway of adaptability, ageism, family support, and QoL.

Measuring instruments: The short form (SF) health survey was the most commonly used in this narrative review, accounting for 29.41% of all studies. For example, in the studies by Drewes et al[55], and Hays et al[56]. This was followed by the Medical Outcomes Study HIV Health Survey (MOS-HIV), which was used in 14.71% of studies, such as those by Piette et al[24] and Fazeli et al[57]. The World Health Organization Quality of Life (WHOQOL) BREF was used in 13.24% of studies, such as those by Pereira and Canavarro[41] and Ferreira et al[58]. The Functional Assessment of Human Immunodeficiency Virus Infection (FAHI) QoL was used in 7.35% of studies, such as those by Brown et al[29] and Kalichman et al[50]; the European QoL 5-Dimension 3-Level (EuroQoL 5D-3 L) was used in 7.35%, such as those by Venturini et al[26], Brañas et al[59]; and the HIV/AIDS-Targeted QoL (HAT-QoL) was used in 5.88% of studies, such as those by Slater et al[32] and Okuno et al[60].

Study types and analyses: The majority of studies in this narrative review (89.71%) were cross-sectional. The remaining studies were follow-up studies, which were contributed by Ellis et al[16], Douab et al[28], Brown et al[29], Ezeamama et al[53], Emuren et al[61], Musumari et al[62], and Tierney et al[63].

Regression models were frequently used to assess summary scores, functioning scores (e.g., role, physical, or sexual functioning), emotional well-being, or total scores. Linear regression models were the most commonly used (60.29%), followed by logistic regression (13.24%)[17,18,38,39,54,58,64-66], hierarchical regression (5.88%)[27,42,45,67], and structural equation models (8.82%)[30,43,68-71].

Study outcome measures

The most common measure of outcomes was QoL, reported in 25 studies (36.76%). Outcomes such as physical-HRQoL or mental-HRQoL summaries were reported in 19 studies (27.94%), while HRQoL was reported in 18 studies (26.47%). The remaining outcomes were from six studies (8.82%).

DISCUSSION

Since the widespread global use of cART, the narrative review for older people living with HIV has been limited in the literature, particularly regarding HRQoL in the context of HIV and aging[72-75]. However, the concept of HRQoL has been of increasing interest to researchers for more than 50 years[76]. Data gaps in the literature need to be identified. This narrative review aims to provide a description of the demographics, methodologies, and outcome measures of the reported studies within this context.

It is important to note that most studies in this narrative review agree on using the age threshold of 50 years or older to define older age in people living with HIV[3,20,22,77]. However, this review included some studies, example Skivington et al[42], Kalichman et al[50], and Mekuria et al[78] that used an age cut-off other than 50 because they met the inclusion criteria for our other objectives. Using the age 50 cut-off could be important in HIV management as older people living with HIV tend to experience a more rapid decline in immune function, higher rates of age-related comorbidities, and poorer immunological responses to antiretroviral therapy compared to younger individuals[79]. Nevertheless, this narrative review excluded two studies by Sok et al[80,81], although they met the inclusion criteria, to avoid biases and conflicts of interest.

The study locations in this narrative review varied by region with most studies conducted in the United States. The peak publication year was 2012. We found that a few studies were conducted in the African region[45,53,66,82], where resources for healthcare are disproportionately limited[83], despite two-thirds of all people living with HIV residing there[84] and the majority of older people living with HIV also living in the region[75,85]. These findings are consistent with the review by Sarma et al[74]. The authors found very few studies from African countries[86-88] with the majority of combined studies coming from North America and European countries. This highlights a research gap in the African region, which limits overall policy and advocacy implications for interventions and improvements in the health and well-being of older people living with HIV.

We found that the study samples ranged from 41 to 4339 participants, with one in three studies including a subsample of older participants. We also noticed that less than one quarter of the studies that included older participants had 100 or fewer older participants. These characteristics were not available for comparison in other reviews[74,75]. A wide range of sample sizes was reported, from 10 to more than 15600[74].

With respect to sex differences, four studies in the narrative review focused solely on older female participants. Additionally, our narrative review identified six studies that included older participants of the non-heterosexual sex. As older adults with HIV often face double stigma: HIV and ageist biases[89]. HIV-related shame was noted to be an important determinant for improving HRQoL in this older population[71]. On the other hand, females living with HIV continue to face challenges in their HRQoL, particularly older females aged 50 years and older. In a study by Kteily-Hawa et al[90], the authors reported that their participants had poorer physical HRQoL than younger participants, which was influenced by food insecurity and mental health factors. This article, unfortunately, was not retrieved by the search engines and was not included in our review.

Socioeconomic status (e.g., education attainment, income, and employment conditions) was not extensively covered in the narrative review. These findings emphasize the need for specific considerations in future research when assessing HRQoL or QoL for people living with HIV. Socioeconomic status is a well-known influence on basic living needs such as food, shelter, and the risk of homelessness, which were reported to be prevalent among people living with HIV in a previous study[91]. Unmet basic living needs were found to have a negative and significant effect on both physical-HRQoL and mental-HRQoL in middle-aged and older people living with HIV[80].

The current narrative review also revealed that most studies did not utilize a conceptual or theoretical framework for HRQoL or QoL. This finding indicates the necessity of developing conceptual frameworks and measurement tools for HRQoL or QoL in older people living with HIV. It is recommended that the Wilson and Cleary model[52] should be considered when evaluating HRQoL as it was the most commonly used in a review by Bakas et al[92]. In non-HIV studies, the Wilson and Cleary model remains useful in evaluating HRQoL or QoL[93].

A recent review by Ojelabi et al[94] concluded that the Wilson and Cleary model possesses favorable properties that make it appropriate for evaluating HRQoL in chronic conditions. The authors suggested that symptom status in the five components of the Wilson and Cleary continuum taxonomy model has the highest magnitude of relative impact on patients’ HRQoL. Because of the advent of cART, HIV symptoms (e.g., pain) among people living with HIV may not be the same as other chronic conditions, benefiting from the advent of cART. In fact, the Wilson and Cleary model has been revised several times by Ferrans et al[95], Vidrine et al[96], and Zubritsky et al[97]. Ferrans et al’s revised model has been used extensively to guide HRQoL research[98]. Despite all efforts that have been made, however, the application of the Wilson and Cleary model may be limited for use on the HIV population due to the unique nature of the virus and the natural aging process, which adds complexity to the illness. Therefore, it is recommended that a new HRQoL model specific to this population be developed, which will be the focus of our next project.

The terms HRQoL or QoL are often used interchangeably in literature, but the concept of the two may not be the same. HRQoL focuses on the effects of illness, which includes how individuals perceive and react to their health status encompassing physical, functional, emotional, and mental well-being. On the other hand, QoL is a broad concept covering all aspects of human life in the context of a health condition, as well as non-health-related elements, such as job, family, friends, and other life situations[99]. Because HRQoL provides a comprehensive evaluation encompassing all the important aspects of QoL related to health, it is recommended to use “health-related” QoL when measuring QoL in the context of a health condition[100].

The current narrative review revealed that a variety of instruments were used to measure HRQoL or QoL such as the SF (29.41%), MOS-HIV (14.71%), WHOQOL-HIV BREF (13.24%) and other instruments (7.35% or less). Zhang et al[101] found that WHOQOL-HIV BREF (19%), MOS-HIV (17%), and SF-36 (12%) were commonly employed. The choice of instruments used (e.g., SF, MOS-HIV, WHOQOL-HIV BREF) specifically impacts HRQoL or QoL dimensions in older people living with HIV. As recommended[102], validation of HRQoL in people living with HIV is essential to ensure standard psychometric properties, produce interpretable results, and detect relatively small treatment effects[103]. A review by Cooper et al[102] suggested that MOS-HIV has the most well-established psychometric properties for HIV-specific measures. However, limitations were identified in their reviews with insufficient input from people living with HIV in the development of the scale, cross-cultural relevance, and applicability. Nevertheless, the WHOQOL-HIV BREF and Patient-reported Outcomes Quality of Life-Human Immunodeficiency Virus (PROQOL-HIV) are considered to have promising psychometric properties and may be more relevant to this population. Again, instruments used for HRQoL or QoL in older people living with HIV are crucial and require urgent consideration.

There are several limitations to this narrative review. Firstly, it was not conducted systematically. Secondly, the narrative review did not delve into factors associated with HRQoL, which is the focus of the next report. Thirdly, despite the effort, one or more eligible articles could be missing from the search engines (e.g., Kteily-Hawa et al[92]). Nevertheless, the findings are suggestive and were gathered through a reliable search using four major search engines and necessary keywords. This review spanned over two and a half decades (from 1995 to mid-2022), making it the most extensive period compared to other existing reviews. The results met the objectives and identified information gaps in research on HRQoL in the context of aging. In particular, the review highlights several concerns, including study location, sample size of older participants, including older women living with HIV and older same-sex people living with HIV, race or ethnicity, socioeconomic status, HIV risk exposures, theoretical frameworks, measurement tools, terminology used, and outcome measures.

CONCLUSION

The intersection of HIV and aging presents challenges that require a deep understanding of the health adversities faced by aging populations with chronic HIV infection. Since the widespread use of cART for HIV, studies of HRQoL in older survivors remain scarce, especially in regions where older people living with HIV predominate such as African countries. Our narrative review addressed various important concerns in the context of HIV and aging related to HRQoL. This included a discussion of the studies’ demographics, methodologies, and measure outcomes. Some specific concerns included but were not limited to geolocations, sample size, sex bias, socioeconomic status, age cut-off of 50, use of the concept or framework, the choice of instrument, and outcomes. The following are our recommendations for assessing HRQoL or QoL to improve the health and well-being of HIV populations, particularly older individuals aged 50 years and older living with HIV. While the findings offer implications for many fields, future studies should focus on, but not be limited to, the following areas: Firstly, research location: In African countries, the majority of people living with HIV reside on the continent. An estimated 7.7 million people in South Africa, with more than two-thirds of this vulnerable population living in sub-Saharan Africa, where resources for healthcare are disproportionately limited. Secondly, older participants: As the number of older people living with HIV increases, the cut-off age of 50 should be considered. Research agendas for specific older groups such as women and same-sex individuals, are a priority as they are among the most vulnerable populations. Lastly, conceptual framework and measurement tools: To gain a better understanding of HRQoL, including physical-HRQoL and mental-HRQoL, or QoL in the context of HIV and aging appropriate conceptual or theoretical framework, as well as measurement tools are required.

ACKNOWLEDGEMENTS

In memory of Professor Emerita Mary V. Seeman, MD, who dedicated her time to guiding and mentoring Phan Sok’s PhD studies at the Institute of Medical Science (IMS), University of Toronto, Toronto, Canada. Dr. Seeman passed away peacefully on April 23, 2024. This article was partially written based on a chapter from Phan Sok’s doctoral thesis.