Abstract
Objectives
Initial HIV cure interventions may not meet expert‐defined target product profiles (TPPs; desired treatment attributes). Understanding how people with HIV perceive ideal and likely HIV cure attributes is essential. This study examined which optimal TPP attributes people with HIV consider important and which minimum attributes and strategies they find acceptable. Additionally, it explored patterns of importance and their association with the acceptance of minimum attributes and cure strategies.
Methods
A cross‐sectional survey (July 2023–March 2024) among 420 people with HIV assessed the importance of eight optimal attributes, the acceptability of fifteen minimum attributes, and five prominent cure strategies. Latent class analysis identified groups of people with different patterns of importance ratings.
Results
Optimal HIV cure attributes most frequently endorsed as important were ‘no HIV transmission risk’ (76.4%), ‘immune system recovery’ (66.4%), and ‘protection from reinfection’ (63.8%). Twelve of fifteen minimum attributes and all cure strategies were acceptable (mean > 3). Four latent classes of importance ratings emerged: exacting (N = 129, 30.7%; all attributes important), ambivalent (N = 121, 28.8%; neutral ratings), indifferent (N = 28, 6.7%; most attributes unimportant/neutral), and selective (N = 142, 35.2%; most attributes important except cure regimen‐related factors). ANOVAs showed that participants with ambivalent importance patterns were less accepting of minimum attributes and strategies, while participants with indifferent importance patterns were more accepting of unacceptable minimum attributes.
Conclusions
People with HIV in the Netherlands find most HIV cure interventions acceptable, even if they do not meet optimal TPPs. However, perspectives differ across subgroups.
Keywords: community engagement, HIV, HIV cure, MIPA, people with HIV
INTRODUCTION
Worldwide, approximately 39.9 million individuals live with HIV [1]. Antiretroviral treatment (ART) has transformed HIV into a manageable chronic condition, but ART is not curative and requires lifelong adherence, which remains challenging for many. The challenge of ART adherence is compounded by concerns regarding multidrug resistance, especially as the pace of discovery of new drugs decreases [2]. Moreover, despite the significant contribution of ART to HIV prevention, HIV transmission persists, with 1.3 million new infections reported in 2023 [1]. It is, hence, unlikely that ART alone can end the HIV epidemic [3]. The pursuit of an HIV cure, whether through the elimination of the virus from the body (i.e., HIV eradication, clearance cure) or ART‐free durable control (variously referred to as functional cure, remission, post‐treatment control, or HIV suppression) is therefore needed.
Lewin et al. [4] conducted Delphi consultations with stakeholders in HIV cure and related fields to establish target product profiles (TPPs) for an HIV cure. TPPs specify desired attributes of a potential treatment and serve as guidance for treatment developers. Consensus emerged on the optimal attributes of an HIV cure, which can be summarized as the complete eradication of HIV from the body, in a safe, effective and scalable manner, and ensuring lifelong protection from reinfection. They also agreed on the minimal requirements for an HIV cure, which were considered to provide at least two years of ART‐free durable control and preferably offer protection from HIV reinfection.
While HIV‐cure experts have established potential TPPs, the perspectives of people with HIV on optimal and minimum HIV cure attributes and strategies remain understudied, which is crucial for aligning interventions with end‐user needs [5, 6]. Existing studies among people with HIV highlighted differing preferences regarding potential HIV cure intervention scenarios [7, 8, 9, 10, 11, 12, 13, 14]. For instance, research from the United States, Australia and the Netherlands suggests a preference among people with HIV for HIV eradication [7, 8, 9, 10, 11, 14], whereas a Ghanaian study found a preference for ART‐free durable control [12]. However, these studies offer limited insights into which specific attributes or strategies of an HIV cure are considered important or acceptable.
A few studies have identified some important HIV cure attributes. Research from Hong Kong found that restoring and stabilizing the immune system were most valued [15]. In the United States, research on long‐acting ART injectables or implants, seen as early steps towards an HIV cure, and ART‐free remission scenarios, a likely initial approach to curing HIV, revealed that complete HIV removal remained the most desirable outcome, with the risk of transmission to partners being unacceptable [16, 17]. However, these studies focused on scenarios, rather than evaluating specific cure attributes. Moreover, although recent qualitative research has begun to explore perceptions of specific HIV cure strategies [18, 19], few studies have assessed the acceptability of prominent strategies like gene therapy, ‘block and lock’, ‘shock and kill’, immunotherapy or a combination of these strategies, on a larger scale.
The importance and acceptability of HIV cure attributes and strategies likely differ across age, gender, treatment experiences and context [12, 18, 19]. Additionally, HIV‐related illness perceptions [13], which are the subjective beliefs an individual holds about their illness, have previously been shown to influence HIV prevention and treatment strategies [20, 21], may also play a role in HIV cure perspectives. Illness perceptions encompass people's beliefs about the nature of the illness, its symptoms, timeline, consequences and causes. They also encompass beliefs about personal and treatment control and an individual's knowledge of the illness. Earlier studies suggest that HIV‐related illness perceptions may influence cure research by affecting engagement, perceived need, concerns and acceptability of HIV cure development [13, 14, 22].
Contributing towards inclusive HIV cure development, this study aimed to go beyond the binary comparison of HIV eradication and ART‐free durable control scenarios by identifying which expert‐defined optimal attributes of TPPs for HIV cure are considered important by people with HIV and determine which minimum HIV cure attributes and prominent HIV cure strategies are deemed acceptable. To better understand who may find which HIV cure attributes important, we also sought to identify distinct groups of people with HIV with similar patterns of importance based on their perceived importance ratings of optimal HIV cure attributes. Additionally, we explored how participant characteristics and HIV‐related illness perceptions were associated with these groups. Finally, we evaluated whether differences in these groups with different patterns of importance were associated with varying levels of acceptance of minimum HIV cure attributes and prominent HIV cure strategies.
MATERIALS AND METHODS
Design and procedures
The authors newly collected the data for this study between July 2023 and March 2024. The survey formed part of a larger project on perceptions of HIV cure research in the Netherlands. Participants provided informed consent before starting the survey, which they could terminate anytime. To avoid any misconceptions among participants, it was clearly explained and emphasized on multiple occasions that no HIV cure is yet available and that the presented HIV cure attributes were entirely hypothetical. No pre‐education materials were provided before the survey. The study protocol was approved by the Faculty Ethics Review Board of the Faculty of Social and Behavioral Science at Utrecht University (FETC20‐373), and the Ethics Review Committee Psychology and Neuroscience of Maastricht University (188 11 02 2018_S21).
Participants and recruitment
Eligible participants included people with HIV, partners of people with HIV, and gay, bisexual and other men who have sex with men (GBMSM) without HIV who were over 18 years of age and resided in the Netherlands. This study included only data from people with HIV. Recruitment was conducted online (Instagram® and Grindr® advertisements) and offline (pamphlets/print media advertisements) through HIV‐related organizations in the Netherlands: Hiv Vereniging (Dutch Association of people with HIV), Hello Gorgeous (part of national HIV alliance), Volle Maan (health communication agency), the Amsterdam municipal health service and HIV care providers at HIV clinics in the Netherlands.
Measures
Participant characteristics
We collected information on age, gender (cisgender men = born male, self‐identified man; cisgender women = born female, self‐identified woman; other), sexual orientation (gay/lesbian, heterosexual, bisexual, other), educational attainment (university degree, no university degree), migration background (no migration background, first‐generation migration background, or second‐generation migration background), and having a steady partner(s) (yes, no).
Additional data included year of diagnosis, HIV status disclosure (to anyone, to no one), and current ART use (yes, no). We assessed the frequency of ART‐related side effects and forgetting to take ART over the past month. Both items were scored on a 5‐point scale ranging from 1 (never) to 5 (very often), with ART adherence scores reversed so that higher values reflect better adherence. We further recorded whether participants had ever changed or stopped ART (yes/no), latest viral load status (undetectable, detectable or unknown), most recent CD4 T‐cell count (less than 500, 500 or more or unknown), history of AIDS diagnosis (yes, no or unknown), and prior participation in HIV‐related research (yes, no).
HIV‐related illness perceptions
Participants completed an adapted version of the Brief Illness Perception Questionnaire [23], assessing seven dimensions of HIV‐related illness perceptions: perceived consequences, perceived personal control, perceived treatment control, perceived identity, experienced concerns, experienced emotions and perceived illness comprehensibility. The perceived duration dimension was excluded due to HIV's well‐known chronic nature. Each item was rated on a 5‐point scale, ranging from 1 = not at all to 5 = very much. Internal consistency was acceptable (Cronbach's α = 0.77), and an average score of HIV‐related illness beliefs was calculated; higher scores represent a higher threat perception of HIV.
HIV cure attributes
Participants were asked to rate eight optimal and fifteen minimum HIV cure attributes, covering seven of the nineteen categories identified by Lewin et al. These seven categories (clinical efficacy, protection from re‐infection, transmission risk, need for boosters, regimen duration, administration and safety) were selected based on interviews with ten HIV clinicians, nurses and biomedical researchers, and in consultation with the study's community and professional advisory boards. The remaining twelve categories (e.g., target population, storage and handling, financing source product registration path) were excluded, as they focused on logistical aspects of an HIV cure rather than on what a cure would mean for people. Table 1 presents the survey items related to each of the attributes that were assessed.
TABLE 1.
Target product profile for HIV cure according to Lewin et al. and study adaptations.
| Target product profile as described by Lewin et al. (2020) [4] | Items | |||
|---|---|---|---|---|
| Optimum | Minimum | How important do you find that… | How acceptable do you find… | |
| Clinical efficacy | Viral load below the detection threshold (<50 copies HIV RNA per mL), effective in ≥90% of subjects, average relapse rate <2% per year and remission duration >3 years or complete eradication of virus, including the rebound‐competent reservoir, as detected by a diagnostic biomarker | Viral load below the transmission threshold (conservatively defined as <200 copies HIV RNA per mL), effective in ≥20% of individuals, average relapse rate <10% per year and remission duration >2 years | HIV will be removed from your body | HIV is present in the body but suppressed without ART |
| You no longer have to take ART | There is a small chance that HIV becomes active again after ART‐free viral suppression | |||
| Your immune system recovers and improves | ||||
| HIV cannot be transmitted | ||||
| Protection from reinfection | Full | None | After being cured, you cannot be reinfected with HIV | After a cure, it is possible to become reinfected with HIV |
| After you have recovered from HIV, you have to use condoms or PrEP to avoid contracting HIV again | ||||
| Dosing and administration | Single administration, oral preferred, but subcutaneous administration (volume ≤1 mL) acceptable | Oral preferred but parenteral (including infusions) acceptable | Treatment is administrated via pills | |
| Treatment is administrated via injections | ||||
| Treatment is administrated via drip/central line | ||||
| Treatment is only administrated in hospitals | ||||
| Regimen duration | 3 months | 12 months | The treatment is a short procedure | |
| Need for booster | None | At most, once a year | Treatment is a one‐time procedure | Every 2 years you have to undergo a treatment for an HIV cure |
| Every 5 years, you have to undergo a treatment for an HIV cure | ||||
| Safety and tolerability | No grade 3 or 4 adverse events | No serious adverse events, frequency of grade 3 reversible adverse events dependent on clinical efficacy (<5% with near 20% efficacy rate or <20% with >80% efficacy rate), frequency of significant irreversible adverse events (e.g., neuropathy, liver cirrhosis, and carcinogenicity) <1% | There are no serious side effects | Side effects of an HIV cure are comparable to the side effects of current ART |
| Side effects of an HIV cure are worse than the side effects of current ART | ||||
| Need for monitoring | None | Must be safe and accessible, particularly if relapse risk is high, qualitative viral load monitoring: every 1–4 weeks during treatment, after ART interruption, for 8–12 weeks; every 4 weeks for 6 months after completion of regimen; every 3 months after 6 months of completion of regimen and stable viral suppression | After you have recovered from HIV, you will be monitored in a hospital for a number of months to a year | |
| After you have recovered from HIV, you will be monitored in a hospital for a number of years | ||||
| After you have recovered from HIV, you will be monitored in a hospital for an indefinite period of time | ||||
Note: The categories of target population, frequency of discontinuation during therapy, special populations, contraindications, adjunct treatments, need for screening, storage and handling, product registration path, target delivery setting, cost of goods sold, and expected financing source were omitted because they were considered to be too technical or irrelevant for our population by the professional and community advisory boards.
Abbreviations: ART, antiretroviral treatment; PrEP, pre‐exposure prophylaxis; RNA, ribonucleic acid.
Participants rated the importance of eight optimal HIV cure attributes on a 5‐point scale, ranging from 1 = very unimportant to 5 = very important. To enhance the interpretability of the latent class analysis, responses were recoded into unimportant (1, 2), neutral (3), and important (4, 5). Additionally, participants rated the acceptability of the fifteen minimum HIV cure attributes on a 5‐point scale, ranging from 1 = very unacceptable to 5 = very acceptable.
HIV cure strategies
We assessed the acceptability of five potential HIV cure strategies: gene therapy (ex vivo), shock and kill, block and lock, immunotherapy and combination therapy. Together with community and professional advisory boards, and the Hiv Vereniging, brief informational videos (~30 s) and textual descriptions were created to explain these potential strategies (Table 2). Participants could opt for video and/or text explanations based on their preference. Acceptability of each strategy was rated on a 5‐point scale ranging from 1 = very unacceptable to 5 = very acceptable.
TABLE 2.
Participant information on the different HIV cure scenarios.
| Text | Video impression | |
|---|---|---|
| Gene therapy |
At the moment, researchers are investigating whether ‘gene therapy’ is a possible way to cure HIV. What is gene therapy? ‐ There are cells in the blood that protect us against diseases.
|
|
| Immunotherapy |
Various studies are being conducted on ‘immunotherapy’. What is immunotherapy?
|
|
| Shock and kill |
‘Shock and kill’ might be a potential way to cure HIV. What is shock and kill?
|
|
| Block and Lock |
‘Block and lock’ is a potential strategy to cure HIV. What is ‘block and lock’?
|
|
| Combination therapy |
It is likely that multiple strategies need to be combined to cure HIV. One example is a combination of ‘block and lock’ with gene therapy. To what extent do you find it acceptable that multiple strategies need to be combined for a possible cure for HIV? |
No video |
Note: Full videos are available in Supplementary materials.
Data analysis
Descriptive statistics were calculated to describe the sample and ratings of the importance and acceptability of HIV cure attributes and strategies. To identify subgroups based on their perceived importance of optimal HIV cure attributes, a latent class analysis (LCA) was performed. Models with two to six latent classes were estimated. Multiple fit statistics were considered, including the Bayesian Information Criterion (BIC) and the Akaike Information Criterion (AIC), the Vuong‐Lo–Mendell–Rubin (VLMR) likelihood ratio test, entropy, and class size. Lower values for BIC and AIC indicated better model fit [24]. In the VLMR likelihood ratio test, p < 0.05 indicated significant improvement in model fit compared to a model with one less class. Entropy values ≥0.80 were considered indicative of acceptable classification accuracy. Additionally, class sizes were required to be substantial (>5%) [24]. Following the selection of the best‐fitting model, each participant was assigned to the class for which their membership probability was highest. Class labels were assigned based on commonalities within and differences between classes. The LCA was conducted using poLCA version 1.4.1 in R [25].
Differences between identified classes in participant characteristics and HIV‐related illness perceptions were examined by analyses of variance (ANOVA) for continuous variables and Chi‐squared tests for categorical variables. Variables associated with the latent classes at p < 0.10 were then included in a multivariable multinomial logistic regression to identify predictors of class membership, with statistical significance set at p < 0.05.
Class differences in acceptance of minimum HIV cure attributes and strategies were analysed using ANOVAs. For significant ANOVA results (p < 0.05), analyses of covariance (ANCOVA) were performed, controlling for participant characteristics and HIV‐related illness perceptions associated with the latent classes (p < 0.10). Bonferroni‐corrected post‐hoc tests were used for pairwise comparisons following ANCOVA (p < 0.05).
RESULTS
Participant characteristics
Most participants were cisgender men (87.9%) (Table 3), with a mean age of 53.9 years (SD = 12.6). Sixty percent held a university degree, and 22.6% had a migration background. Many identified as gay/lesbian (78.1%) and over half had one or more steady partners (57.4%).
TABLE 3.
Characteristics of PWH classified by the four patterns of importance (N = 420).
| Total (N = 420) | Exacting (N = 129) | Ambivalent (N = 121) | Indifferent (N = 28) | Selective (N = 142) | Results χ 2‐test or ANOVA | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| N (%) | M (SD) | N (%) | M (SD) | N (%) | M (SD) | N (%) | M (SD) | N (%) | M (SD) | p‐value | |
| Age (in years) | 53.94 (12.56) | 55.38 (11.59) | 55.75 (12.67) | 43.53 (12.55) | 53.15 (12.56) | p < 0.001 | |||||
| Gender | |||||||||||
| Cis male | 369 (87.9) | 111 (86.0) | 109 (90.1) | 22 (78.6) | 127 (89.4) | p = 0.320 | |||||
| Cis Female | 47 (11.2) | 17 (13.2) | 10 (8.3) | 5 (17.9) | 15 (10.6) | ||||||
| Other | 4 (1.0) | 1 (0.8) | 2 (1.7) | 1 (3.6) | 0 (0.0) | ||||||
| University degree | |||||||||||
| No | 167 (39.8) | 62 (48.4) | 49 (40.5) | 8 (28.6) | 48 (33.8) | p = 0.055 | |||||
| Yes | 252 (60.0) | 66 (51.6) | 72 (59.5) | 20 (71.4) | 94 (66.2) | ||||||
| Migration background | |||||||||||
| No | 325 (77.4) | 92 (71.3) | 105 (86.8) | 19 (67.9) | 109 (76.8) | p = 0.093 | |||||
| First generation | 36 (8.6) | 13 (10.1) | 7 (5.8) | 4 (14.3) | 12 (8.5) | ||||||
| Second generation | 59 (14.0) | 24 (18.6) | 9 (7.4) | 5 (17.9) | 21 (14.8) | ||||||
| Sexual identity | |||||||||||
| Gay/lesbian | 328 (78.1) | 98 (76.0) | 98 (81.0) | 18 (64.3) | 114 (80.3) | p = 0.327 | |||||
| Heterosexual | 60 (14.3) | 23 (17.8) | 14 (11.6) | 7 (25.0) | 16 (11.3) | ||||||
| Bisexual | 21 (5.0) | 5 (3.9) | 8 (6.6) | 2 (7.1) | 6 (4.2) | ||||||
| Other | 11 (2.6) | 3 (2.3) | 1 (0.8) | 1 (3.6) | 6 (4.2) | ||||||
| Partner(s) | |||||||||||
| No | 178 (42.6) | 60 (46.5) | 46 (38.3) | 12 (42.9) | 60 (42.6) | p = 0.637 | |||||
| Yes | 240 (57.4) | 69 (53.5) | 74 (61.7) | 16 (57.1) | 81 (57.4) | ||||||
| Years since HIV diagnosis | 2008.50 (9.05) | 2006 (9.08) | 2008.18 (9.24) | 2011 (7.64) | 2009 (8.66) | p = 0.006 | |||||
| ≤1995 | 39 (9.3) | 16 (12.9) | 13 (11.2) | 1 (3.6) | 9 (6.4) | ||||||
| 1996–2020 | 335 (79.8) | 103 (83.1) | 92 (79.3) | 24 (85.7) | 116 (82.9) | ||||||
| 2021–2023 | 34 (8.1) | 5 (4.0) | 11 (9.5) | 3 (10.7) | 15 (10.7) | ||||||
| ART use | |||||||||||
| Yes | 417 (99.3) | 129 (100.0) | 121 (100.0) | 27 (96.4) | 140 (98.6) | p = 0.112 | |||||
| No | 3 (0.7) | 0 (0.0) | 0 (0.0) | 1 (3.6) | 2 (1.4) | ||||||
| How often do you experience side effects from ART? | 2.04 (1.13) | 2.13 (1.25) | 1.93 (1.01) | 2.04 (1.06) | 2.06 (1.12) | p = 0.582 | |||||
| Ever changed or switched ART | |||||||||||
| No | 302 (71.9) | 98 (76.0) | 90 (74.4) | 21 (77.8) | 93 (66.4) | p = 0.267 | |||||
| Yes | 115 (27.4) | 31 (24.0) | 31 (25.6) | 6 (22.2) | 47 (33.6) | ||||||
| ART adherence | 4.61 (0.71) | 4.52 (0.80) | 4.64 (0.59) | 4.51 (0.98) | 5.68 (0.64) | p = 0.256 | |||||
| Viral Load | |||||||||||
| Undetectable | 414 (98.6) | 127 (98.4) | 119 (99.2) | 28 (100.0) | 140 (98.6) | p = 0.881 | |||||
| Detectable | 4 (1.2) | 2 (1.6) | 1 (0.8) | 0 (0.0) | 2 (1.4) | ||||||
| CD4‐count | |||||||||||
| Less than 500 cells/mm3 | 108 (25.7) | 31 (24.0) | 36 (29.8) | 8 (28.6) | 33 (23.2) | p = 0.547 | |||||
| 500 or more cells/mm3 | 251 (59.8) | 76 (58.9) | 69 (57.0) | 19 (67.1) | 87 (61.2) | ||||||
| I do not know | 61 (14.5) | 22 (17.1) | 16 (13.2) | 1 (3.6) | 22 (15.5) | ||||||
| Have you ever had AIDS? | |||||||||||
| Yes | 66 (15.7) | 20 (15.5) | 20 (16.5) | 4 (14.3) | 22 (15.5) | p = 0.895 | |||||
| No | 336 (80.0) | 104 (80.6) | 98 (81.0) | 22 (78.6) | 112 (78.9) | ||||||
| I do not know | 18 (4.3) | 5 (3.9) | 3 (2.5) | 2 (7.1) | 8 (5.6) | ||||||
| Disclosure | |||||||||||
| To someone | 398 (94.8) | 117 (90.7) | 118 (97.5) | 28 (100.0) | 135 (95.1) | p = 0.052 | |||||
| To no one | 22 (5.2) | 12 (9.3) | 3 (2.5) | 0 (0.0) | 7 (4.9) | ||||||
| Participation in HIV medical research | |||||||||||
| Yes | 214 (51.0) | 68 (52.7) | 66 (54.5) | 12 (42.9) | 68 (48.9) | p = 0.561 | |||||
| No | 206 (49.0) | 51 (43.3) | 55 (45.5) | 16 (57.1) | 74 (52.1) | ||||||
| HIV‐related illness perceptions | 2.29 (0.58) | 2.35 (0.66) | 2.14 (0.46) | 2.36 (0.55) | 2.35 (0.59) | p = 0.009 | |||||
Note: p‐values that are bold are <0.10.
Abbreviations: ART, antiretroviral treatment; ANOVA, analysis of variance.
Most participants were diagnosed between 1996 and 2020, with about 10% before 1996 and 8.1% after 2020. Almost all had disclosed their HIV status to someone (94.8%), were on ART (99.3%) and had an undetectable viral load (98.6%). ART side effects were infrequent (mean = 2.04/5, SD = 1.13), and treatment adherence was high (mean = 4.61/5, SD = 0.71). The mean HIV‐related illness perception was 2.29/5 (SD = 0.58), indicating a moderately threatening perception.
Perceived importance of optimal HIV cure strategies
Most participants found no transmission risk (76.4%), immune system recovery (66.4%), and full protection from reinfection (63.8%) important HIV cure attributes (Table 4). Approximately half considered no ART (54.8%), no serious side effects (51.0%) and HIV eradication (49.3%) important. Short treatment regimen (29.8%) and a one‐time procedure (42.9%) were endorsed less, with many participants rating them neutral or unimportant.
TABLE 4.
Importance of HIV cure attributes among the different classes (N = 420).
| Total (N = 420) | Exacting (N = 129) | Ambivalent (N = 121) | Indifferent (N = 28) | Selective (N = 142) | |
|---|---|---|---|---|---|
| N (%) | N (%) | N (%) | N (%) | N (%) | |
| Clinical efficacy: HIV transmission risk | |||||
| Unimportant | 17 (4.0) | 0 (0.0) | 10 (8.3) | 6 (21.4) | 1 (0.7) |
| Neutral | 82 (19.5) | 4 (3.1) | 62 (51.2) | 5 (17.9) | 11 (7.7) |
| Important | 321 (76.4) | 125 (96.9) | 49 (40.5) | 17 (60.7) | 130 (91.5) |
| Clinical efficacy: immune system improves | |||||
| Unimportant | 10 (2.4) | 2 (1.6) | 2 (1.7) | 6 (21.4) | 0 (0.0) |
| Neutral | 131 (31.2) | 13 (10.1) | 102 (84.3) | 6 (21.4) | 10 (7.0) |
| Important | 279 (66.4) | 114 (88.4) | 14 (14.0) | 16 (57.1) | 132 (93.0) |
| Protection from reinfection | |||||
| Unimportant | 23 (5.5) | 0 (0.0) | 6 (5.0) | 14 (50.0) | 3 (2.1) |
| Neutral | 129 (30.7) | 7 (5.4) | 86 (71.1) | 10 (35.7) | 26 (18.3) |
| Important | 268 (63.8) | 122 (94.6) | 29 (24.0) | 4 (14.3) | 113 (79.6) |
| Clinical efficacy: no ART | |||||
| Unimportant | 26 (6.2) | 7 (5.4) | 11 (9.1) | 6 (21.4) | 2 (1.4) |
| Neutral | 164 (39.0) | 18 (14.0) | 105 (86.8) | 7 (25.0) | 34 (23.9) |
| Important | 230 (54.8) | 104 (80.6) | 5 (4.1) | 15 (53.6) | 106 (74.6) |
| Safety: no serious side effects | |||||
| Unimportant | 8 (1.9) | 0 (0.0) | 0 (0.0) | 8 (28.6) | 0 (0.0) |
| Neutral | 198 (47.1) | 16 (12.4) | 82 (67.8) | 15 (53.6) | 85 (59.9) |
| Important | 214 (51.0) | 113 (87.6) | 39 (32.2) | 5 (17.9) | 57 (40.1) |
| Clinical efficacy: HIV removed from the body | |||||
| Unimportant | 30 (7.1) | 7 (5.4) | 13 (10.7) | 5 (17.9) | 5 (3.5) |
| Neutral | 183 (43.6) | 20 (15.5) | 96 (79.3) | 10 (35.7) | 57 (40.1) |
| Important | 207 (49.3) | 102 (79.1) | 12 (9.9) | 13 (46.4) | 80 (56.3) |
| No need for a booster: one‐time treatment | |||||
| Unimportant | 31 (7.4) | 0 (0.0) | 3 (2.5) | 28 (100.0) | 0 (0.0) |
| Neutral | 209 (49.8) | 0 (0.0) | 109 (91.1) | 0 (0.0) | 100 (70.4) |
| Important | 180 (42.9) | 129 (100.0) | 9 (7.4) | 0 (0.0) | 42 (29.6) |
| Regimen duration: short treatment | |||||
| Unimportant | 49 (11.7) | 0 (0.0) | 12 (9.9) | 25 (89.3) | 12 (8.5) |
| Neutral | 246 (58.6) | 16 (12.4) | 102 (84.3) | 2 (7.1) | 126 (88.7) |
| Important | 125 (29.8) | 113 (87.6) | 7 (5.8) | 1 (3.6) | 4 (2.8) |
Abbreviation: ART, antiretroviral treatment.
Identifying patterns of importance
The LCA fit statistics indicate that a four‐class model may offer the most appropriate fit (Table 5). While five‐ and six‐class models showed lower AIC values and higher entropy scores, they also had higher BIC values. Therefore, the four‐class solution, with the lowest BIC, substantial class sizes (>5%), and acceptable entropy (0.86), was chosen.
TABLE 5.
Fit statistics for latent class analysis to define importance ratings of eight optimal HIV cure attributes.
| Number of classes | BIC | AIC | Entropy | VLMR p‐value | % of the smallest class |
|---|---|---|---|---|---|
| 2 | 5022.84 | 4889.51 | 0.79 | <0.001 | 46.11 |
| 3 | 4912.36 | 4710.35 | 0.87 | <0.001 | 6.58 |
| 4 | 4840.69 | 4570.00 | 0.86 | <0.001 | 6.60 |
| 5 | 4852.12 | 4512.74 | 0.86 | <0.001 | 6.68 |
| 6 | 4876.96 | 4468.91 | 0.88 | <0.001 | 2.13 |
Note: Model is based on N = 420 participants.
Abbreviations: AIC, Akaike information criterion; BIC, Bayesian information criterion; VLMR, Vuong‐Lo–Mendell–Rubin likelihood ratio test of model fit.
Figure 1 and Table 3 show the perceived importance of optimal HIV cure attributes across different classes. Participants in class 1 (N = 129, 30.71%) exhibited an exacting pattern, generally rating all attributes as important, with attribute importance ratings ranging from 79.1% to 100.0%. Participants in class 2 (N = 121, 28.81%) displayed an ambivalent importance rating pattern, considering most attributes neutral (neither important nor unimportant). The proportion of neutral responses per attributes ranged from 51.2% to 91.1%. Participants in class 3 (N = 28, 6.7%) had an indifferent pattern, with only three attributes deemed important by a majority: no transmission risk (60.7%), immune system recovery (57.1%), and no more ART (53.6%). All other attributes were rated as neutral or unimportant by most. Participants in class 4 (N = 142, 33.8%) had a selective pattern, rating some attributes, including transmission risks (91.5%), immune system recovery (93.0%), potential reinfection (79.6%), no more ART (74.6%), and HIV removal (56.3%) as important in combination with more neutral ratings of regimen‐related items, such as duration, need for booster, and no serious side effects.
FIGURE 1.
Importance level of HIV cure attributes among the different classes.
Associations between participant characteristics and patterns of importance
Chi‐square and ANOVA tests showed associations between age, educational attainment, migration background, years since diagnosis, disclosure and illness perceptions with the four classes (p < 0.10) (Table 3). Table 6 presents multinomial logistic analysis results, with selective patterns (class 4, the largest class) as the reference category. Participants who did not have a university degree had significantly higher odds of rating all eight attributes as important (OR = 1.831, 95% CI = 1.089–3.080, p = 0.023) as did those with a more recent diagnosis (OR = 0.960, 95% CI = 0.930–0.991, p = 0.011). Having a second‐generation migration background (OR = 0.353, 95% CI = 0.386–0.947, p = 0.028) and more threatening HIV‐related illness perceptions (OR = 0.525, 95% CI = 0.331–0.887, p = 0.036) were associated with lower odds of displaying ambivalent atterns. Lastly, participants with indifferent patterns tended to be younger (OR = 0.932, 95% CI = 0.894–0.972, p < 0.001).
TABLE 6.
Multinomial regression on class assignment and participant characteristics (N = 407).
| Determinants | Exacting (N = 129) | Ambivalent (N = 121) | Indifferent (N = 28) | ||||||
|---|---|---|---|---|---|---|---|---|---|
| AOR | 95% CI | p‐Value | AOR | 95% CI | p‐Value | AOR | 95% CI | p‐Value | |
| Age | 0.808 | 0.547 | 0.932 | 0.894–0.972 | <0.001 | ||||
| University degree | |||||||||
| No | 1.831 | 1.089–3.080 | 0.023 | 0.129 | 0.496 | ||||
| Yes (ref) | |||||||||
| Migration background | |||||||||
| No (ref) | |||||||||
| First generation | 0.484 | 0.441 | 0.691 | ||||||
| Second generation | 0.313 | 0.353 | 0.134–0.932 | 0.036 | 0.845 | ||||
| Years since HIV diagnosis | 0.960 | 0.930–0.991 | 0.011 | 0.402 | 0.245 | ||||
| Disclosure | |||||||||
| To someone (ref) | |||||||||
| To no one | 0.149 | 0.384 | . | ||||||
| HIV‐related illness perceptions | 0.364 | 0.525 | 0.331–0.887 | 0.006 | 0.958 | ||||
Note: The largest class with selective importance patterns (class 4) is the reference category; significant p‐values are given in bold. Nagelkerke R 2: 0.16. No p‐value is provided for disclosure in the indifferent class, as a comparison was impossible since everyone in this class had disclosed to someone.
Abbreviations: AOR, adjusted odds ratio; 95% CI, 95% confidence interval.
Acceptability of HIV minimum cure attributes
Twelve of fifteen minimum attributes were considered (somewhat) acceptable, with mean scores above three (Table 7). Three exceptions, ‘more severe side effects than those typically associated with ART,’ ‘small chance of HIV reactivation after long‐term ART‐free durable control,’ and ‘risk of reinfection’, could be considered unacceptable (mean < 3).
TABLE 7.
Mean acceptance of HIV cure attributes and strategies among different classes with significant differences identified by ANCOVA Bonferroni post‐hoc test (N = 420).
| Total (N = 420) | Exacting (N = 129) | Ambivalent (N = 121) | Indifferent (N = 28) | Selective (N = 142) | |
|---|---|---|---|---|---|
| M (SD) | M (SD) | M (SD) | M (SD) | M (SD) | |
| HIV cure minimum attributes | |||||
| Need for monitoring: several months to a year | 4.44 (0.73) | 4.48 (0.86) a | 4.21 (0.61) a , b , c | 4.75 (0.44) b | 4.54 (0.69) c |
| Administration: via pillsNS | 4.37 (0.73) | 4.35 (0.87) | 4.25 (0.61) | 4.46 (0.75) | 4.37 (0.72) |
| Administration: via injections | 4.31 (0.82) | 4.39 (0.83) | 4.11 (0.80) b | 4.57 (0.57) b | 4.36 (0.82) |
| Need for monitoring: a few years | 4.24 (0.82) | 4.26 (0.98) | 4.05 (0.67) b , c | 4.59 (0.69) b | 4.33 (0.76) c |
| Administration: in hospital | 4.15 (0.98) | 4.25 (1.05) a | 3.88 (0.99) a , b , c | 4.63 (0.49) b | 4.20 (0.94) c |
| Administration via central line (drip) | 4.07 (0.95) | 4.17 (1.07) a | 3.78 (0.87) a , b , c | 4.52 (0.58) b | 4.15 (0.90) c |
| Need a booster every five yearsNS | 3.98 (0.97) | 3.92 (1.02) | 3.89 (0.86) | 4.15 (0.99) | 4.08 (0.99) |
| Safety: similar side effects to ARTNS | 3.80 (0.97) | 3.74 (1.07) | 3.74 (0.86) | 4.07 (1.09) | 3.85 (0.96) |
| Need for monitoring: indefinitely | 3.80 (1.03) | 3.97 (1.14) a | 3.64 (0.87) a | 4.07 (1.00) | 3.72 (1.04) |
| Clinical efficacy: ART‐free durable controlNS | 3.69 (0.93) | 3.71 (0.96) | 3.69 (0.81) | 3.68 (1.28) | 3.66 (0.93) |
| Need a booster every two yearsNS | 3.65 (1.00) | 3.58 (1.10) | 3.58 (0.94) | 3.96 (0.94) | 3.73 (0.95) |
| Protection from reinfection: PrEP or condom use | 3.31 (1.26) | 3.23 (1.36) | 3.06 (1.11) b | 4.04 (1.26) b | 4.74 (0.45) |
| No protection from reinfectionNS | 2.45 (1.07) | 2.17 (1.08) d | 2.50 (0.95) | 3.30 (1.30) d , e | 2.51 (1.03) e |
| Clinical efficacy: small chance of relapse after ART‐free durable control | 2.40 (1.01) | 2.09 (1.03) a | 2.66 (0.89) a | 2.67 (1.24) | 2.40 (1.01) |
| Safety: more severe side effects than ART | 2.24 (0.94) | 2.14 (0.93) d | 2.19 (0.73) b | 2.85 (1.06) b , d , e | 2.27 (1.04) e |
| HIV cure strategies | |||||
| Gene therapy | 4.35 (0.70) | 4.47 (0.65) a | 4.02 (0.80) a , b , c | 4.74 (0.45) b | 4.46 (0.86) c |
| Combination therapy | 4.20 (0.77) | 4.22 (0.75) a | 3.98 (0.74) a , b , c | 4.54 (0.58) b | 4.30 (0.79) c |
| Immunotherapy | 4.10 (0.79) | 4.11 (0.79) b | 3.90 (0.69) b | 4.54 (0.64) b | 4.17 (0.85) |
| Shock and kill | 4.06 (0.81) | 4.04 (0.87) b | 3.89 (0.72) b | 4.54 (0.64) b , d | 4.13 (0.84) |
| Block and lockNS | 3.87 (0.79) | 3.87 (0.87) | 3.84 (0.63) | 4.18 (0.82) | 3.84 (0.83) |
Note: Means sharing subscripts differ significantly at p = <0.05 as indicated by Bonferroni post‐hoc test in the analysis of covariance (ANCOVA) analyses (see Table S3 for detailed ANCOVA results).
Abbreviation: ART, antiretroviral treatment; NS, not significant in analysis of variance (ANOVA) results (see Table S2 for detailed ANOVA results); PrEP, pre‐exposure prophylaxis.
Significant mean difference between ambivalent and exacting patterns of importance.
Significant mean difference between ambivalent and indifferent patterns of importance.
Significant mean difference between ambivalent and selective patterns of importance.
Significant mean difference between indifferent and exacting patterns of importance.
Significant mean difference between indifferent and selective patterns of importance.
People with HIV with indifferent importance patterns were generally most accepting of minimum attributes, followed by those with selective, exacting and ambivalent patterns (Table 7). ANOVA revealed significant differences for ten of the fifteen minimum HIV cure attributes (Table S1). The five attributes without significant differences were all acceptable (mean > 3) and resembled current treatment approaches, sharing similar side effects, pill administration, HIV suppression and the need for periodic boosters, similar to novel long‐acting ART injectables.
ANCOVA of the ten significantly different minimum attributes confirmed that these differences remained significant after controlling for age, educational attainment, migration background, years since diagnosis, disclosure, and illness perceptions (Table S2). Bonferroni post hoc analyses revealed that significant differences for acceptable minimum attributes (mean > 3) only existed between participants with an ambivalent pattern, who tended to be less accepting, versus other groups (Table 7). However, this trend varied for the three unacceptable minimum attributes (mean < 3). Specifically, participants with ambivalent patterns were more accepting of a potential relapse of durable ART‐free control compared to those with exacting patterns, while participants with indifferent patterns were more accepting of the risk of reinfection and more severe side effects.
Acceptability of HIV cure strategies
All HIV cure strategies were deemed acceptable, with mean scores around four. Gene therapy was the most acceptable strategy (mean = 4.35/5, SD = 0.70). Like minimum HIV cure attributes, people with HIV with indifferent patterns of importance were the most accepting, followed by those with selective, exacting and ambivalent patterns (Table 7).
ANOVA indicated significant differences among the four groups for all strategies except ‘block and lock’ (Table S1). These differences remained significant after controlling for age, educational attainment, migration background, years since diagnosis, disclosure and illness perceptions (Table S2). Bonferroni post hoc tests indicated that participants with an ambivalent importance pattern were significantly less accepting of HIV cure strategies (Table 7).
DISCUSSION
Our study offers insights into what people with HIV in the Netherlands consider important among the expert‐defined optimal attributes of TPPs for HIV cure interventions, and which minimum HIV cure attributes and prominent HIV cure strategies are deemed acceptable. Scholars emphasized the need to evaluate desirable and acceptable characteristics of emerging biomedical interventions to better align interventions with end‐user perspectives [5]. This study also identified diversity in end‐user perspectives by analysing patterns of importance among people with HIV based on their importance ratings of optimal HIV cure attributes and evaluating which participant characteristics and HIV‐related illness perceptions were associated with these patterns. Lastly, we examined whether these patterns of importance influenced the level of acceptance of minimum HIV cure attributes and strategies.
Previous research has primarily focused on comparing HIV eradication with ART‐free durable control [7, 9, 10, 11, 12]. Our findings suggest that eradication may not be the most critical attribute for an acceptable cure. Attributes such as no HIV transmission risk, immune system improvement, protection from reinfection, and no ART were rated important by more people with HIV. The broad acceptance of most minimum HIV cure attributes, including ART‐free durable control, further indicates this, supporting the acceptability of expert‐defined minimal TTP [4]. Future research should move beyond comparing eradication with ART‐free durable control and instead identify important and acceptable attributes of potential HIV cure interventions, particularly those that may fall short of complete eradication, to meaningfully contribute to an inclusive HIV cure development process.
Nevertheless, not all minimum HIV cure attributes were deemed acceptable to participants. Consistent with expert opinions, severe side effects were considered unacceptable. However, while experts did not require protection against reinfection for the minimal TPP, participants viewed it as desirable. Participants also found a potential recurrence of detectable viral load after ART‐free durable control unacceptable, as it could reintroduce the risk of HIV transmission, the aspect of an HIV cure they valued most, which is already effectively managed by ART. This may help explain the limited interest among the younger, indifferent group, who are more likely to be sexually active. In contrast, experts deemed it acceptable if the relapse rate was below 10% [4]. These discrepancies highlight the need for dialogue to better align the desires of people with HIV with the possibilities of HIV cure interventions. Meaningful community involvement in these efforts is essential to prevent miscommunication and build trust [6].
Our study found that participants deemed all HIV cure strategies acceptable, with gene therapy being the most favoured, contrary to earlier US‐based research that reported concerns about cell and gene therapy [18, 19]. Although this finding may reflect greater trust in medical research in the Netherlands, as also evidenced by fewer concerns for analytical treatment interruptions among partners of PWH and GBMSM in the Netherlands compared to the United States [26], it is also likely that 30‐s video presentations did not fully convey the complexity of these hypothetical cure strategies. This aligns with the high willingness to participate in HIV cure research studies reported in surveys, whereas qualitative research, allowing for more interactive discussions between researcher and participant [27], has revealed more cautious attitudes [13]. Therefore, at this early stage, qualitative research exploring HIV cure strategies perceptions in different contexts is warranted as participants can be asked for clarification about efficacy, specific risks and side effects.
The analysis of the importance of optimal HIV cure attributes revealed four patterns: exacting, ambivalent, indifferent and selective. Only two clear distinctions emerged regarding the acceptance of minimum attributes. Participants with ambivalent patterns, who rated all attributes neutrally, were generally more critical of minimum attributes. This may stem from their lower HIV‐related illness perception scores, and potentially better psychosocial and clinical outcomes often experienced by those without a migration background [28, 29], which could reduce their perceived need for an HIV cure and increase concerns [14].
Additionally, we found that participants with indifferent patterns were paradoxically more accepting of minimum HIV cure attributes. This may be attributed to their younger age, which could reduce the perceived urgency for an HIV cure and make them less concerned about risks. Previous research supports this, showing that younger individuals are less interested in participating in HIV cure studies [12, 30, 31]. Moreover, research outside the HIV field indicates that younger people have a greater tendency to overlook risks [32].
Participants with exacting patterns valued all aspects of an HIV cure, including short treatment duration, having a one‐time procedure, and having no serious side effects, unlike those with selective patterns. This difference may arise from their longer experiences with HIV and potential exposure to more invasive ART, leading them to prioritize regimen‐related attributes [14]. Educational attainment also appeared to influence importance‐rating patterns, with university graduates more likely to exhibit a selective pattern, only considering specific attributes as important. Despite these differences, no significant variation in acceptance was found between the two groups, possibly due to a shared overall perceived necessity for HIV cure development, which we did not directly measure but likely affects the acceptability of minimum attributes [14]. Future research should explore how factors like migration background, age, time since diagnosis, education and HIV‐related illness perceptions affect the perceived necessity for HIV cure development and its influence on minimum cure attributes' acceptability.
The identification of four distinct importance patterns, along with their associated participant characteristics and varying levels of acceptability, provides valuable insights for guiding meaningful community engagement and developing inclusive HIV interventions. However, it is important to note that we focused on only 7 of the 19 attributes proposed in the TPP by Lewin et al. [4]. Our study, hence, provides insight into which aspects of an HIV cure are considered desirable and acceptable but does not capture perspectives on broader issues, such as the roll‐out of a cure or who should have access. These questions include ethical and financial considerations and warrant further research, particularly given that many people in the Netherlands view HIV cure development as important in general but not necessarily for themselves [14]. Additionally, we examined individual HIV cure attributes rather than combining them into potential HIV cure scenarios. Future research could explore these combinations, for example, using a discrete choice experiment [33]. Furthermore, the hypothetical nature of the HIV cure attributes and strategies that were examined may limit the direct applicability of our findings to actual HIV cure uptake. Additionally, while our sample included key demographic groups of people with HIV in the Netherlands, most of whom are on ART, such as older individuals, GBMSM, as well as a relatively high proportion of females and people with a migration background, who were actively sought during recruitment, it was not representative of the population of people with HIV in the Netherlands. Transgen der women were underrepresented, and the convenience sampling approach may have attracted participants already interested in HIV cure research, as reflected by the limited number of participants with indifferent importance patterns (N = 28, 6.7%). Furthermore, in the context of the Netherlands, where lifelong ART is widely accessible, this limits the generalizability of these findings to other global settings, particularly to low‐ and middle‐income countries where access to ART and partner access to free or affordable PrEP cannot be assumed. Nevertheless, the findings are likely indicative of patterns in other high‐income countries with comparable levels of ART availability and HIV management. Future research should therefore focus on populations in diverse contexts to capture a broader range of perspectives [13].
In conclusion, our study provides valuable insights into the importance of optimal HIV cure attributes, acceptable minimum attributes and strategies. We found that most people with HIV in the Netherlands consider HIV cure interventions acceptable, even if they do not meet optimal TTPs. However, varying perspectives exist. Understanding these diverse viewpoints can contribute to the inclusive development of HIV cure interventions, ultimately ensuring the successful implementation of an accessible, ethical and equitable cure for HIV.
AUTHOR CONTRIBUTIONS
Maaike A. J. Noorman: Conceptualization; data curation; formal analysis; investigation; methodology; project administration; resources; visualization; writing – original draft. John B. F. de Wit: Conceptualization; funding acquisition; methodology; supervision; writing—review and editing. Tamika A. Marcos: Project administration; investigation resources; writing—review and editing. Sarah E. Stutterheim: Conceptualization; funding acquisition; supervision; writing—review and editing. Thijs Albers: Resources; investigation; writing—review and editing. Kai J. Jonas: Conceptualization; funding acquisition; investigation supervision; writing – review and editing. Chantal den Daas: Conceptualization; funding acquisition; methodology; supervision; writing—review and editing.
FUNDING INFORMATION
Aidsfonds has funded this research under Grant P‐53001.
CONFLICT OF INTEREST STATEMENT
Sarah E. Stutterheim and Kai J. Jonas received funding, unrelated to this topic from Gilead, MSD and ViiV Healthcare. The others authors declare no conflicts of interest.
ETHICS STATEMENT
The study protocol was approved by the Faculty Ethics Review Board of the Faculty of Social and Behavioral Science at Utrecht University (FETC20‐373), and the Ethics Review Committee Psychology and Neuroscience of Maastricht University (188 11 02 2018_S21).
Supporting information
Table S1. ANOVA results for the level of acceptance of HIV cure suboptimal attributes and HIV cure strategies among the different classes.
Table S2. ANCOVA results for the level of acceptance of HIV cure suboptimal attributes and HIV cure strategies among the different classes.
Video S1. Participant information on the block and lock strategy.
Video S2. Participant information on gene therapy.
Video S3. Participant information on immunotherapy.
Video S4. Participant information on the shock and kill strategy.
ACKNOWLEDGEMENTS
The authors thank the following individuals and organizations for their contributions to this paper. First, the authors are immensely grateful to the participants who shared their time, making this research possible. The authors also extend our appreciation to the professional and community advisory board members who provided their expertise, insights and guidance throughout the research process, which greatly enhanced the quality of this study. The authors would also like to acknowledge the Hiv Vereniging (Dutch Association of people with HIV) for their support and collaboration. We want to thank everyone who helped us during the data collection process namely: the Hiv Vereniging and in particular the men of Poz and Proud, Hello Gorgeous (part of the national HIV alliance), Volle Maan, the Amsterdam municipal health service, the members of Maastricht University's HIV Lab, and HIV care providers at HIV clinics in the Netherlands. The authors would like to give special recognition to Natasja van Holten, whose enthusiasm and network were instrumental in facilitating the recruitment process. During the preparation of this work, the authors used ChatGPT and Grammarly in order to enhance clarity and conciseness in writing. After using this tool/service, the authors reviewed and edited the content as needed and take full responsibility for the content of the publication.
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Table S1. ANOVA results for the level of acceptance of HIV cure suboptimal attributes and HIV cure strategies among the different classes.
Table S2. ANCOVA results for the level of acceptance of HIV cure suboptimal attributes and HIV cure strategies among the different classes.
Video S1. Participant information on the block and lock strategy.
Video S2. Participant information on gene therapy.
Video S3. Participant information on immunotherapy.
Video S4. Participant information on the shock and kill strategy.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.