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Attitudes and Acceptability on HIV Self-testing Among Key Populations: A


Literature Review

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AIDS Behav (2015) 19:1949–1965
DOI 10.1007/s10461-015-1097-8

ORIGINAL PAPER

Attitudes and Acceptability on HIV Self-testing Among Key


Populations: A Literature Review
Carmen Figueroa1,2 • Cheryl Johnson2 • Annette Verster2 • Rachel Baggaley2

Published online: 9 June 2015


Ó The Author(s) 2015. This article is published with open access at Springerlink.com

Abstract HIV self-testing (HIVST) is a potential strategy estos grupos de población. Analizamos los datos según el
to overcome disparities in access to and uptake of HIV ingreso del paı́s utilizando la clasificación del Banco
testing, particularly among key populations (KP). A liter- Mundial, el tipo de muestra, la supervisión ofrecida y otros
ature review was conducted on the acceptability, values aspectos cualitativos. La mayorı́a de los estudios identifi-
and preferences among KP. Data was analyzed by country cados fueron en paı́ses con ingresos elevados y con hom-
income World Bank classification, type of specimen col- bres que tienen sexo con hombres (HSH), quienes
lection, level of support offered and other qualitative reportaron una alta aceptabilidad de la prueba casera,
aspects. Most studies identified were from high-income debido a su practicidad y privacidad; aunque les preocu-
countries and among men who have sex with men (MSM) paba la falta de asesoramiento, el posible error de usuario y
who found HIVST to be acceptable. In general, MSM were la precisión de la prueba. Existe poca información sobre los
interested in HIVST because of its convenient and private valores y preferencias acerca de la prueba casera en otros
nature. However, they had concerns about the lack of grupos de población vulnerable. Considerando el aumento
counseling, possible user error and accuracy. Data on the de su disponibilidad, incluso en paı́ses con pocos recursos,
values and preferences of other KP groups regarding deberı́a ser un área prioritaria en la investigación.
HIVST is limited. This should be a research priority, as
HIVST is likely to become more widely available, Keywords Key populations  Acceptability  HIV self-
including in resource-limited settings. testing  Values  Preferences

Resumen Autoexaminarse para el VIH con una prueba Introduction


casera, podrı́a reducir las disparidades del acceso al diag-
nóstico del VIH, especialmente entre grupos de población Key populations (KP) (men who have sex with men
claves. Revisamos la literatura disponible sobre la acepta- (MSM), sex workers (SW), people who inject drugs
bilidad, los valores y preferencias de la prueba casera en (PWID), transgender people and people in prisons or
closed settings) are disproportionately affected by HIV.
Pooled HIV prevalence is 10–50 times greater than in
Electronic supplementary material The online version of this general populations [1–4]. Every year there are over two
article (doi:10.1007/s10461-015-1097-8) contains supplementary
material, which is available to authorized users. million new HIV infections worldwide, and it is estimated
that 40 % of all new adult HIV infections are among KP [5,
& Carmen Figueroa 6]. Despite such high HIV burden and the increasing global
[email protected]
coverage of HIV testing and treatment services, KP remain
1
Escuela Nacional de Salud Pública, Instituto de Salud Carlos underserved [5].
III, Madrid, Spain Present disparities in access to HIV services among KP
2
HIV/AIDS Department, World Health Organization, Geneva, are significant. According to recent surveys, nearly 20 % of
Switzerland MSM report that they are ‘‘afraid to access health services’’

123
1950 AIDS Behav (2015) 19:1949–1965

and 1 in 10 do not have access to prevention services, to KP and that will also reduce disparities in coverage and
including condoms [7]. Regional reports suggest that access to HIV services [26]. Based on promising evidence,
across 35 countries in sub-Saharan Africa only 60 % of sex a changing policy environment, and renewed global
workers have received an HIV test in past 12 months, emphasis to reach KP and global targets that aim to close
although this may be an over estimation because of non- the testing gap [10], this review focuses on the accept-
representative convenience sampling in many instances [8]. ability, values and preferences of KP on HIVST.
In the USA, an estimated 49 % of PWID have received an
HIV test in past 12 months [9]. Reaching UNAIDS’ ‘‘90 90
90’’ targets, 90 % of people with HIV knowing their status, Methods
90 % linked to anti-retroviral therapy (ART) and 90 %
virally suppressed [10] will not be possible without From April to July 2014 we performed a systematic search
increased efforts to improve access to and uptake of HIV to identify evidence on acceptability, values and prefer-
testing among KP. ences regarding HIVST among KP (defined as MSM, SW,
HIV self-testing (HIVST) is an emerging approach with transgender people, PWID and people in prison). We
the potential to be high impact, low cost and empowering searched five electronic databases (PubMed, PopLine,
for those who may not otherwise test, particularly among Scopus, EMBASE and PsycINFO) and five major HIV/
KP. In order to suit a local context, HIVST may be AIDS conference databases (British HIV/AIDS Associa-
delivered in multiple ways which vary as to type of sup- tion, Conference on Retroviruses and Opportunistic Infec-
port, range of access and site of sale or distribution. tions, European AIDS Society Conference, International
Although HIVST does not provide a HIV diagnosis, and all AIDS Society and US National HIV Prevention Confer-
reactive self-test results must be confirmed according to ence) for publications between January 1995 and July
national testing algorithms [11], it may stimulate demand 2014. Abstracts were included if full-texts were not
for and increase uptake of HIV testing and counseling available. Gray literature was identified through a com-
among KP, who may be more reluctant to or unable to seek prehensive Google search. References were also manually
existing services. searched to identify other sources. Experts and authors of
Several countries have already introduced or are con- pertinent studies were contacted for any further references
sidering the introduction of HIVST as part of national and clarifications (Fig. 1). The search was conducted
strategic plans, testing strategies and policy and regulatory according to the PRISMA checklist (see Electronic Sup-
frameworks [11–14]. At this time, however no optimal plementary Material).
approach has been identified, particularly to reach KP [11]. Search terms included ((HIV OR HIV seropositivity OR
Potential benefits of HIVST among KP identified in the HIV infections) AND ((self test*) OR (home*test*) OR
literature include: the possibility to increase access to HIV (rapid*test*))). The search was restricted to human sub-
testing [15, 16], reduce sexual risk behavior [17], and that jects. No language or geographic limitations were placed
it may lead to cost-savings in the context of pre-exposure on the search. Two reviewers screened studies. The first
prophylaxis (PrEP) implementation projects [18]. However reviewer read study titles and abstracts meeting the inclu-
there are concerns about linkage to further HIV testing and sion criteria. The second reviewer evaluated the screening
diagnosis, prevention, care and treatment as appropriate to criteria and approved selected studies. Disagreements
a client’s HIV status, particularly in legally constrained between reviewers were resolved through discussion and
settings, social and emotional harm following HIVST, use consensus. Studies were only included if they used original
for ‘‘point-of-sex testing’’(where individuals use HIVST to data, included at least one of the five KP groups, used
‘‘screen’’ potential sex partners), risk of sexual disinhibi- qualitative and/or quantitative methods that evaluated any
tion, or substitution of highly accurate facility-based HIV aspect on HIVST values and preferences. All other articles
testing among high incidence populations [19, 20]. Addi- were excluded. Studies examining home specimen collec-
tionally, there are concerns about the potential for coercion tion kits were excluded, because participants did not
to test, for example for SW being forced to test by brothel interpret their test result (Fig. 1). Literature was summa-
owners and clients [21, 22]. rized qualitatively according to study design and method-
While there are several systematic reviews highlighting ology, location, resource and population.
the high acceptability of HIVST [23–25], none focus on KP
values and preferences. In July 2014, the World Health Analysis
Organization (WHO) issued the first consolidated guideli-
nes on HIV prevention, diagnosis and treatment for the five Documents were analyzed manually through describing
KP groups [26]. This guidance in particular, calls for ser- their content. Using Microsoft Excel, a systematic frame-
vice delivery approaches that are acceptable and appealing work and extraction tool was developed, to obtain

123
AIDS Behav (2015) 19:1949–1965 1951

Records idenfied Addional records idenfied Addional records


through database through conference abstract idenfied through
searching search and a comprehensive bibliography search (n=16)
(n=2088) Google search (n=52)

Records idenfied through database searching


Duplicates n=128
(n=2156)

Records screened based on Not relevant to


tle and abstract self-tesng
(n=2028) (n=1870)

Reasons for exclusion (n=135):


Records assessed for • From the same study
eligibility • Reviews/Opinion
(n=158) • Not self-administered
• Not specific to HIVST or KP

Studies included
(n=23)

Fig. 1 Selection of studies

particular information on HIVST values and preferences. participants were able to perform home tests, and those
After data was extracted it was coded by country income which did not include self-tests but explored survey par-
according to the World Bank [27], the educational level ticipants’ values and preferences.
(college, high school, elementary or less), the type of We examined the process of linkage within HIVST for
specimen collection (oral fluid-based, blood-based, or not studies where HIVST was performed and where HIVST
specified), KP group (MSM, SW, PWID, transgender was not performed by participants answering a question-
people, or people in prison) and the type of support pro- naire about HIVST. We primarily analyzed linkage in any
vided (supervised, unsupervised, or not specified). study reporting linkage from HIVST to further HIV testing,
Values and preferences were defined as participants’ to receiving a HIV diagnosis in a facility, and/or to
views on HIVST, concerns about HIVST, willingness to enrolment in HIV prevention, care or treatment services.
pay or buy a HIV self-test, a test kit either specifically As a secondary analysis we also examined studies which
packaged for HIVST or a rapid diagnostic test (RDT) reported on participants’ ‘‘intention to link’’ following a
distributed or used for HIVST, and other qualitative values reactive HIV self-test result.
and preferences reported by participants. In addition, we
examined the acceptability of HIVST, defined as the Quality Assessment
willingness to take a test in the future or as an increased
frequency of testing with a HIV home-test. Reported A quality critique of quantitative data from cross-sectional
acceptability was then categorized as high (C67 %), (Electronic Supplementary Tables S1, S2) and cohort
moderate (66–34 %) or low (B33 %). studies (Electronic Supplementary Table S3) was per-
Approaches to HIVST were defined in accordance to the formed using the STROBE checklist [29]. Reports were
2014 WHO and UNAIDS technical update on HIVST [28]. critiqued using the STROBE checklist as they were
Supervised approaches were defined as those which reporting outcomes of a cross-sectional study [30, 31]. For
involved direct support from a health worker or a volunteer a conference abstract reporting a randomized control trial
before or after individuals tested him or herself. Unsuper- [16] (Electronic Supplementary Table S4) we used the
vised approaches were defined as situations when HIVST CONSORT guidelines [32]. Qualitative studies [17, 31,
offered without requiring direct support, but could include 33–35] were evaluated with a guide for critically apprais-
the provision of information about where or how to access ing qualitative research [36]. Due to lack of standardized
support services. Studies with no information or comparing reporting of primary and secondary outcomes, and
types of approaches or specimen collection were analyzed heterogeneity of data on values and preferences, a meta-
separately. The studies reviewed included both those where analysis was not conducted.

123
1952 AIDS Behav (2015) 19:1949–1965

Results Acceptability

We identified 2156 citations from databases, abstracts and Out of 14 studies, eight were consistent with a high
bibliography searches, after removing duplicates and acceptability, as defined above [15, 16, 31, 33, 39, 40, 43,
irrelevant articles (Fig. 1). After an initial screening, we 48], five studies with moderate [34, 35, 38, 47, 51] and one
retrieved 158 citations, following which we removed 135 study with low acceptability [49]. The acceptability rate
references that did not pertain to HIVST or KP, or were ranged from 21 to 98 %. All studies included MSM [15,
reviews using data from other studies. Ultimately, 23 16, 31, 33–35, 38–40, 43, 47–49, 51] and three studies
studies met our inclusion criteria and were analyzed for this included FSW [31, 35, 47]. Chakravarty et al. reported the
review: 16 (69.6 %) were peer-reviewed articles [15, 17, lowest acceptability, this study was in MSM couples in
33–35, 37–47], five (21.7 %) were abstracts [16, 48–51] USA, surveyed about an oral fluid-based HIV RDT, and
and two (8.7 %) were reports [30, 31]. Table 1 presents the 21 % of HIV negative men aware of the test were extre-
characteristics of the 23 included studies. All studies mely likely to use the test [49].
reported on values and preferences on HIVST (Tables 2-3) Two studies reported acceptability by KP type [31, 47].
and 14 studies reported also on acceptability (Fig. 2). In Kenya, participants where surveyed about an oral fluid-
One study (4.3 %) was performed in a low-income based HIV RDT, and FSW (98 %) reported a higher
country (LIC) [31]. Four studies (17.4 %) were performed acceptability than MSM (57 %) [31]. In China, accept-
in middle-income countries (MIC) [35, 41, 43, 47] and 18 ability was very similar between MSM (58.2 %) and FSW
studies (78.3 %) were performed in high-income countries (51.1 %), in this study, participants were surveyed also
(HIC) [15–17, 30, 33, 34, 37–40, 42, 44–46, 48–51]. Age about an oral fluid-based HIV RDT, but 6.9 % had ever
was reported in 21 studies (91 %), and ranged from 13 to taken one before [47] (Figs. 2, 3).
76 years [15–17, 30, 31, 33, 34, 37–50]. Education level In five studies (n = 5/14) participants self-administered
was reported in 14 studies (61 %) [15, 17, 31, 33, 34, 39– an HIV RDT, but did not necessarily interpreted their test
47]. In 11 studies more than half of the total sample had at results (Fig. 3) [16, 33, 35, 39, 47], remainder studies
least a college education [15, 17, 33, 34, 39–43, 45, 47]. (n = 9/14) participants were surveyed about HIVST [15,
All studies included MSM (100 %) [15–17, 30, 31, 33–35, 31, 34, 38, 40, 43, 48, 49, 51]. Overall, no large differences
37–51], three studies (13 %) included female sex workers in acceptability were identified across type of approach,
(FSW) [31, 35, 47], one study (4.3 %) included PWID [46], type of specimen collection, having performed an HIVST,
one study (4.3 %) included transgender women [50], and country income, group of KP, or educational level of
no studies included people in prison. Sample size varied population.
from 27 to 5908 participants. Thirteen studies used oral
fluid-based HIV RDTs [15–17, 31, 33–35, 37, 38, 44, 46,
47, 49], five used fingerstick/whole blood-based HIV RDTs Values and Preferences for HIVST
[30, 39, 42, 45, 50], three used both types of HIV RDTs
[41, 43, 51] and two did not provide information on the Twenty-three studies assessed key population values and
type of specimen collection used [40, 48]. Nine studies preferences on HIVST (Tables 2, 3).
used an unsupervised approach [15, 30, 33, 34, 38, 41, 45–
47], seven used a supervised approach [16, 17, 35, 37, 42, Benefits of HIVST
44, 50], six did not report this information [31, 40, 43, 48,
49, 51], and one compared both approaches [39]. In 10 Findings about benefits were variously documented in 18
studies participants performed a HIVST RDT (n = 10/23), articles, including: (a) Convenience, (b) Privacy, (c) Pain-
[16, 17, 30, 33, 35, 39, 42, 44, 47, 50], of which six used a less, and (d) Easiness to Use.
supervised approach [16, 17, 35, 42, 44, 50] and three used Across reviewed studies convenience (n = 13/18) [15,
an unsupervised approach [30, 33, 47] and one used both 17, 30, 31, 35, 37, 38, 40, 44–46, 49, 51] and privacy
[39]. The remainder did not self-test for HIV but were (n = 12/18) [15, 30, 31, 35, 37, 38, 40, 43, 45, 46, 48, 51]
surveyed about their values and preferences (n = 13/23) were reported as benefits of HIVST most frequently, fol-
[15, 31, 34, 37, 38, 40, 41, 43, 45, 46, 48, 49, 51]. Nearly lowed by easiness-to-use (n = 8/18) [16, 30, 31, 35, 37, 38,
all studies (95.7 %) were observational (14 cross-sectional, 42, 51] and painlessness (n = 4/18) [35, 37, 38, 47].
one qualitative, two cohort, five mixed method (cross- Ochako et al. reported that in Kenya HIVST is easy to use,
sectional and qualitative)) [15, 17, 30, 31, 33–35, 37–51] even for people with low education [31].
and one study (4.3 %) was a randomized control trial [16] Privacy was more frequently reported as a benefit
(Table 1). of HIVST in studies using an unsupervised approach

123
Table 1 Characteristics of included studies
No. Author and Setting Sample Type of Type of test Performed Study design Key populations Median or mean age Summary
year size approach HIVST (%) (SD or IQR) score for
quality
critiquea

1 Xun (2013) China 1137 Unsupervised Oral fluid- Yes Quantitative MSM (32.6 %) MSM: 26 years (IQR 66 % (21/32)
[47] based cross-sectional FSW (35.6 %) 23–31) FSW:
VCT (31.8 %) 25 years (IQR
23–28)
2 Carballo- USA 57 Unsupervised Oral fluid– Yes Quantitative and MSM (100 %) 34.3 years (SD 11.9)
AIDS Behav (2015) 19:1949–1965

Diéguez based qualitative


(2012) cross-sectional
[33]
3 MiraTess Netherlands, Germany, 1122 Unsupervised Blood-based Yes Quantitative MSM (36 %) n/a (IQR 13–76) 47 % (15/32
(2008) United Kingdom, Austria, survey Women and
[30] Switzerland and Belgium HTX men
(64 %)
4 Marley China 800 Supervised Oral fluid- Yes Quantitative and MSM (46.3 %) n/a 66 % (21/32)
(2014) based qualitative FSW (25 %)
[35] cross-sectional VCT(28.6 %)
5 Ng (2013) Singapore 994 Supervised Oral fluid- Yes Quantitative MSM (16 %) 32.4 years (IQR 66 % (21/32)
[44] based cross-sectional HTX men or 27.1–40.5)
women (84 %)
6 Katz USA 133 Supervised Oral fluid- Yes Randomized MSM (100 %) 39 years (IQR 30–48) 59 % (10/17)
(2012) based control trial
[16]
7 Carballo- USA 27 Supervised Oral fluid- Yes Quantitative and MSM (100 %) 34 years (SD 11.4)
Diéguez based qualitative
(2012) cross-sectional
[17]
8 Mayer USA 161 Supervised Blood-based Yes Quantitative MSM (97.5 %) 36.5 years (SD n/a) 36 % (4/11)
(2014) cohort study TG (2.5 %)
[51]
9 De la Spain 519 Supervised and Blood-based Yes Quantitative MSM (36.7 %) n/a* 56 % (18/32)
Fuente Unsupervised cross-sectional
(2012)
[39]
10 Lee (2007) Singapore 350 Supervised Blood-based Yes Quantitative MSM (10 %) 33 years (IQR 27–41) 69 % (22/32)
[42] cross-sectional HTX men or
women (90 %)
11 Han (2014) China 1342 Unsupervised Oral fluid- No Quantitative MSM (100 %) n/a* 66 % (21/32)
[41] based and survey
blood-
based
1953

123
Table 1 continued
1954

No. Author and Setting Sample Type of Type of test Performed Study design Key populations (%) Median or mean age (SD or IQR) Summary
year size approach HIVST score for

123
quality
critiquea

12 Spielberg USA 460 Unsupervised Oral fluid- No Quantitative MSM (33.9 %) PWID n/a* 63 % (20/32)
(2003) [46] based survey (24.3 %) HTX men or
women and lesbians
(41.8 %)
13 Bavinton Australia 2018 Unsupervised Oral fluid- No MSM (100 %) 34.3 years (SD 11.5) 63 % (20/32)
(2013) [15] based
14 Gray (2013) Australia 233 Unsupervised Oral fluid- No Quantitative and MSM (96.1 %) HIV non- 38.6 years (SD n/a) 59 % (19/32)
[34] based qualitative positive or not aware
cross-sectional (3.9 %)
15 Skolnik USA 134 Unsupervised Blood-based No Quantitative MSM (45 %) HTX men or n/a (IQR 18–59) 56 % (18/32)
(2001) [45] survey women and Bisexual
women or lesbians (55 %)
16 Chen (2010) Australia 172 Unsupervised Oral fluid- No Quantitative MSM (100 %) 32 years (IQR 15–71) 56 % (18/32)
[38] based cross-sectional
17 Ochako Kenya 982 n/a Oral fluid- No Quantitative and MSM (10.2 %) FSW MSM: 24 years (IQR 18–49) 72 % (23/32)
(2014) [31] based qualitative (10.2 %) GP (79.6 %) FSW: 26 years (IQR 18–49)
cross-sectional GP: 27 years (IQR 18–49)
18 Lippman Brazil 356 n/a Oral fluid- No Quantitative MSM (100 %) 26 years (IQR 22–33) 63 % (20/32)
(2014) [43] based and survey
blood-
based
19 Bilardi Australia 31 Supervised Oral fluid- No Qualitative MSM (100 %) n/a* n/a
(2013) [37] based description
20 Chakravarty USA 310 Supervised Oral fluid- No Quantitative MSM (100 %) 43.1 years (IQR n/a) 45 % (5/11)
(2014) [50] couples based cohort study
21 Wong Hong 1122 n/a Oral fluid- No Quantitative MSM (100 %) n/a 73 % (8/11)
(2014) [52] Kong based and cross-sectional
SAR, blood-
China based
22 Greacen France 5908 n/a n/a No Quantitative MSM (100 %) 35 years (IQR 27–43) 59 % (19/32)
(2013) [40] survey
23 Bavinton Australia 567 n/a n/a No Quantitative MSM (87.1 %) non-HIV- 38.5 years (SD n/a) 54 % (6/11)
(2014) [48] survey positive men (12.9 %)
HIVST HIV self-testing, n/a not available, MSM Men who have sex with men, HTX Heterosexual, FSW female sex workers, TG transgender people, VCT voluntary counselling testing, GP
general population, IQR interquartile range, SD standard deviation
* Age reported as a percentage
a
The summary score for quality critique represents the number of criteria reported over the total number of criteria
AIDS Behav (2015) 19:1949–1965
Table 2 Values and preferences of studies with supervised support
Low income country Middle income countries High income countries
Study Ochako et al. Lippman et al. Marley et al. Bilardi et al. Ng et al. Katz et al. Chakravarty Carballo-
[31]a [43]a [35] [37] [44] [16] et al. [49]a Diéguez et al. [17]

Study aims Identify willingness to use Determine the Assess feasibility and Explore the Compare user Described ease Explore the Assessed whether
oral fluid-based RDTs acceptability acceptability of oral views of acceptability and of use and attitudes on at-risk HIV-
for self-testing, and of HIVST, fluid-based RDTs MSM on feasibility on HIVST acceptability HIVST uninfected MSM
factors associated with compared to among MSM, FSW HIVST, using RDTs versus of HIVST among MSM would use
the potential adoption clinic-based and VCT clients; including RDTs used at the POC using oral couples HIVST to screen
and use of oral HIVST HIV testing, assess the quality of acceptability, by trained personnel, fluid-based potential sexual
AIDS Behav (2015) 19:1949–1965

and explore HIVST with oral fluid- potential use, including user attitudes RDT among partners prior to
preferences based RDTs compared benefits and towards oral fluid- high risk intercourse
for HIVST to VCT and assess limitations based RDTs used for MSM
attitudes towards HIVST
HIVST among FSW
Participants MSM: 70 % easy to use; 68 % (244/356) FSW: 96.5 % (193/200) Convenience, 95 % Convenience* 63.2 % Easy to 56 % Convenience*
pros’ 68 % guarantees Privacy convenient, 95.5 % privacy, use* Convenience*
confidentiality and (191/200) painless, painless, and
privacy; 28 % required 13 % (26/200) easy to easy to use*
no visit to a health use and 14 % (28/200)
facility; 21 % saves privacy
times; and 12 %
convenient* FSW: 70 %
guarantees
confidentiality and
privacy; 52 % easy to
use; 32 % convenient;
and 23 % required no
visit to a health facility*
Concerns MSM: 44 % (n/a) were 30.6 % (109/ FSW: 55.5 % (111/200) Lack of n/a n/a Confidentiality User error*
afraid of a positive 356) User accuracy counseling, and lack of
result. FSW: 3 % (3/ error and accuracy* time*
100) were afraid of a 22 % (79/
positive result, 1 % (1/ 356) lack of
100) afraid of counseling
misinterpreting the
results, and 1 % (1/100)
believed health
workers should perform
the test
1955

123
Table 2 continued
1956

Low income country Middle income countries High income countries

123
Study Ochako et al. Lippman et al. Marley et al. Bilardi et al. Ng et al. Katz et al. Chakravarty Carballo-
[31]a [43]a [35] [37] [44] [16] et al. [49]a Diéguez et al. [17]

Preferences MSM: 56 % would 47 % (167/356) FSW: 42.8 % (83/200) Available 88.9 % (884/994) n/a n/a Available as OTC*
procure and perform preferred HIVST over preferred saliva testing, OTC and available OTC,
the test on their own; testing in clinics; 60 % while 57.2 % (111/ online, 88.6 % (881/
49 % preferred to (213/356) would 200) still preferred provide 994) prefer to do
obtain the test kits in HIVST to make blood testing; 7.5 % access to it in private and
either private chemists/ choices about (5/200) wanted 24 h 73.9 % (735/
pharmacies or 47 % in unprotected sex with simplified procedure counselling 994) felt that
government clinics* regular partners and and 7 % (14/200) and with post-test
FSW: 95 % would 52 % (184/356) with wanted the test to be proper counseling was
procure and perform new partners offered free instructions* necessary
the test on their
own; 75 %
preferred to obtain the
kits from private
chemists/pharmacies,
53 % in government
facilities and 13 % in
supermarkets/shops*
Willingness Range in study n/a n/a In average 28 % (277/994) 46 % Would pay n/a n/a
to pay $ 0.54–4.35 MSM: $ 9.2–18.5 Would pay at B $ 20
(US$) 57 % would be least $ 15 26 % would pay
willing to pay. Mean C $ 40
max price $ 3.35
FSW: 94 % would be
willing to pay. Mean
max price $ 3.1
Serious n/a n/a n/a n/a n/a n/a n/a n/a
adverse
self testing
events
Linkage to MSM:50 % would n/a n/a n/a n/a 2 HIV reactive n/a n/a
care seek post-test tests: [1] search
counseling and confirmatory
confirmation of testing and care
results* FSW: 75 % immediately
would go to a health [2] search
facility/VCT for confirmatory
confirmation* testing and care
after 2 months
AIDS Behav (2015) 19:1949–1965
Table 2 continued
High income countries
Study Mayer et al. De la Fuente et al. Lee et al. Wong et al. Greacen et al. Bavinton et al.
[50] [39]b [42] [51]c [40]c [48]c

Study aims Assessed the feasibility and Evaluate the feasibility Compare user acceptability and feasibility Describe the Estimate the proportion of Explore the
acceptability of biweekly of HIVST including of using RDTs for HIVST versus RDTs patterns of MSM interested in motivations
HIVST at home using whole obtaining the sample by trained providers at the POC HIVST users authorized kits for HIVST, of using and
blood-based/fingerstick RDTs and interpreting results among MSM their reasons for being implications
(not their own) interested and their of using
correlates HIVST
AIDS Behav (2015) 19:1949–1965

Participants n/a n/a 88 % (300/350) Easy to use 50 % Easy to use, 23 % Convenience and 47.6 %
pros’ 41.2 % 17 % privacy* Privacy*
convenience,
25 % privacy*
Concerns n/a n/a n/a n/a 6 % Accuracy, 6.1 % lack of n/a
counselling and 3.6 % of
user error
Preferences 56.5 % preferred HIV testing at n/a 88 % (304/350) Thought the kit should be 16.2 % Didn’t n/a n/a
home, and 23.6 % preferred sold in public outlets. 89 % (307/350) want
testing in a doctor’s office. preferred to take the test in private; counselling*
90.0 % would be comfortable 87 % (296/350) thought counselling is
testing partners at home* needed before testing
Willingness n/a 87.3 % Were willing to Between $ 7 and $ 13 (n/a) n/a n/a n/a
to pay pay $ 1.25–49 and
(US$) 5.2 % were reluctant
to pay*
Serious n/a n/a n/a n/a n/a n/a
adverse
self testing
events
Linkage to Two participants became HIV n/a n/a 81.6 % believed n/a n/a
care infected for an annualized that they would
incidence of 3.86 (0.47–19.74). get timely
Both were linked to care treatment if
infected with
the virus*
FSW female sex workers, RT rapid testing, OTC over-the-counter, HIVST HIV self-testing, n/a not available, MSM Men who have sex with men, VCT voluntary counselling testing, POC point
of care
* Percentage or raw number not available
a
Type of approach non available
b
Both types of support: supervised and unsupervised
c
Support non available
1957

123
Table 3 Values and preferences of studies with unsupervised support
1958

Middle income countries High income countries

123
Study Xun et al. Han et al. Spielberg Bavinton et al. Carballo-Diéguez Gray et al. Skolnik et al. Chen et al. MiraTess
[47] [41] et al. [46] [15] et al. [33] [34] [45] [38] [30]

Study aims Assess the Examines the Determine Explore which gay Investigate if Determine the Examine Examine the views Describe the
willingness to frequency strategies to men would participants use acceptability preferences of Australian people who
accept the oral and the overcome increase their the HIVST to test and for specific MSM on the prefer to test
fluid HIV correlates of barriers to frequency of themselves/screen epidemiological types of HIV acceptability and themselves,
rapid testing HIVST HIV testing HIVST and sexual partners impact of tests as well as potential uptake reason for
and its among among examine reasons prior to sexual increases in HIV for test of rapid oral testing and
associated MSM persons at for not testing intercourse and testing attributes such testing for HIV in their
factors among risk among men who the strategies that as cost, clinic and home- experiences
most-at-risk have never been they would use counselling based settings
populations tested and privacy
Participants pros’ MSM: 21 % n/a Privacy and 58.7 % (1186/ n/a n/a 24.6 % Privacy 39 % 53 % Privacy,
painless* convenience* 2018) and 30 % Convenience, 46 % easy to
FSW: 33 % convenience, convenience* privacy, painless use and 31 %
painless* 75.5 % (1524/ and easy to use* convenience*
2018) immediate
results and
42.3 % (854/
2018) privacy
Concerns MSM: 49.1 % n/a 31 % Had n/a User error and kits n/a n/a 54 % Lack of n/a
accuracy and concerns, for HIVST not counseling,
7.5 % not been mostly on being free* accuracy and
free* FSW: accuracy, user error*
42.2 % user error
accuracy and and lack of
9.4 % not been counseling*
free*
Preferences n/a 34.7 % n/a n/a 50 % use it with 58.8 % (137/233) n/a n/a n/a
Referred to new partners and preferred oral
obtain the preferred fluid-based
test on the oral fluid-based testing and
internet* RDTs over 54.1 % (126/
fingerstick/whole 233) finger-prick
blood-based RDTs testing
for HIVST*
Willingness to Median price 9.3 % Median price n/a n/a n/a 24 % would pay n/a n/a
pay (US$) (IQR) MSM paid \ $ 8 (IQR) $ 30 $ 50
$ 6.5 1.2 % (n/a)
(3.0.11.3) paid [ $ 50
FSW $ 4.8
(1.6.8.1)
AIDS Behav (2015) 19:1949–1965
AIDS Behav (2015) 19:1949–1965 1959

If HIVST result is reactive

n/a not available, MSM Men who have sex with men, HTX heterosexual, FSW female sex workers, VCT voluntary counseling and testing, POC point of care, PWID people who inject drugs,
(n = 5/6) [15, 30, 38, 45, 46] compared to those using a

98% will link to care*


supervised approach (n = 2/6) [35, 37]. Although
approach was not reported 71 % of MSM in Brazil,
reported that HIVST would offer more privacy than HIV
testing facilities [43]. In general, the benefits for HIVST
MiraTess

described by participants across studies, remain similar;


[30]

even when analyzed by country income, type of KP, par-


n/a

ticipant education level, type of specimen collection, hav-


Chen et al.

ing performed an HIVST and type of approach.


[38]

n/a

n/a

Preferences for HIVST Attributes


Skolnik et al.

Twelve articles provided information on KP preferences


[17, 31, 33–35, 37, 41–44, 50, 51]. Preferences for test type
of sample collection (oral fluid-based or fingerstick/whole
[45]

n/a

n/a

blood-based) (n = 7/12), distribution (n = 7/12), instruc-


Gray et al.

tions (n = 2/12), the availability to link to counseling


(n = 4/12), and how they would like to use the test (n = 6/
[34]

n/a

n/a

12) were reported. Preferences for HIVST attributes varied


across country income setting, type of approach, having
confirmatory testing followed by treatment*

performed a self-test for HIV and type of specimen col-


lection. However, in general, participants reported prefer-
ring HIVST with an oral fluid-based HIV RDT (n = 4/12),
to blood-based HIV RDT (n = 3/12) [33–35, 43].
several participants will seek

Five studies from Kenya, Singapore, USA and Australia


Intended to coerce someone

If self-test result is reactive

reported MSM and FSW generally prefer HIVST to be


to test for HIV (1/57)

available over-the-counter [17, 31, 37, 42, 44], three of


Carballo-Diéguez

which participants have performed an HIVST [17, 42, 44],


and two studies from Australia and China, reported that
et al. [33]

MSM preferred HIVST to be available through the Inter-


net, in neither of the two MSM participants have performed
an HIVST [37, 41]. MSM participants in Australia, desire
HIVST to be available over-the-counter, but specifically
et al. [15]
Bavinton

with proper instructions for use on how to perform a HIV


High income countries

RDT and interpret the test result [37].


n/a

n/a

Three studies reported participants prefer having coun-


Spielberg et al.

seling available [37, 42, 44]. However, one study in Hong


Kong SAR China among MSM reported that 16.2 % of
participants prefer HIVST without counseling [51].
[46]

n/a

n/a

Willingness to Pay
Han et al.

* Percentage or raw number not available

Willingness to pay for a HIVST kit if sold was documented


[41]

n/a

n/a
Middle income

in 11 articles [16, 31, 35, 37, 39, 41, 42, 44–47].


Xun et al.

Willingness to pay varied across population, country


countries

income settings, type of specimen collection, and type of


[47]

n/a

n/a

approach. In HIC settings, study participants were willing


OTC over-the-counter

to pay between BUS$20 and CUS$50 [16, 37, 39, 42, 44–
Table 3 continued

Serious adverse self

46]. In MIC settings, participants were generally willing to


Linkage to care
testing events

pay between (US$1 to US$20) [41, 47]. A study from


China reported that MSM were willing to pay US$6.50
Study

(US$3–US$11), slightly more than FSW who were willing


to pay US$5 (US$2–US$8) [47]. In LIC settings,

123
1960 AIDS Behav (2015) 19:1949–1965

Studies n=14/23

By Type of Sample* By Type of Approach*


Lippman et al [43] Unsupervised
BOTH De la Fuente et al [39] BOTH
Supervised
Wong et al [51]
Unsupervised Katz et al [16]
De la Fuente et al [39] Supervised BLOOD

Carballo-Diéguez et al [33] SUPERVISED


Marley et al [35]
Katz et al [16]

Bavinton et al [15] Carballo-Diéguez et al [33]

Chen et al [38]
Bavinton et al [15]
ORAL
Xun et al [47]
UNSUPERVISED
Gray et al [34] Chen et al [38]

Ochako et al [31]
Gray et al [34]
Marley et al [35]

Chakravarty et al [49] Xun et al [47]

0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100%

LOW MODERATE HIGH LOW MODERATE HIGH


Acceptability Acceptability

* Two studies were not included in the above chart as they did not include sample * Five studies were not included in the above chart as they did not include support
information: Greacen et al (40) and Bavinton et al (48). information: Lippman et al (43), Wong et al (51), Greacen et al (40), Bavinton et al (48) and
Chakravarty et al (49).
Men who have sex with Men
Female Sex Workers

Fig. 2 Studies evaluating HIV self-testing acceptability

participants were willing to pay between US$0.54– Concerns were more commonly reported in studies
US$4.35 [31]. According to this study in Kenya, MSM using oral fluid-based RDT (n = 9/11) [17, 31, 33, 35, 37,
were willing to pay (US$3.35), slightly more than FSW 38, 46, 47, 49]. Lack of counseling was not a concern in
who were willing to pay US$3.10 [31]. studies where MSM and FSW participants have performed
Participant willingness to pay in all supervised HIVST an HIVST [17, 33, 35, 47]. However, concerns for HIVST
studies (n = 4/11) ranged between (CUS$1 to CUS$20) generally remain the same when analyzed by country
[16, 37, 42, 44]. In 2/11 studies using an unsupervised income, KP group, participant education level, and type of
approach, participants were willing to pay between approach.
([US$20 to CUS$50) [45, 46]. Reluctance to pay (range
5.2–11 %) was only reported in four studies where MSM Linkage to Care
and FSW participants have performed an HIVST, these
studies examined both approaches and were in MIC and Six studies reported on some aspect of linkage to care from
HIC settings [16, 35, 39, 47]; all but one used oral fluid- HIVST, of which the majority were in HIC settings [16, 30,
based HIV RDT [16, 35, 47]. 31, 33, 50, 51]. Two studies, Katz et al. [16] and Mayer
et al. [50] reported actual linkage and enrolment in care
Reported Concerns of HIVST following HIVST. Katz et al. [16] reported two participants
with reactive self-test results who were diagnosed HIV
Concerns about HIVST were documented in 11 articles [17, positive: one participant searched immediately for addi-
31, 33, 35, 37, 38, 40, 43, 46, 47, 49]. The majority of the tional HIV testing and care and the other waited two
studies, in which concerns were reported, stated that partic- months before seeking further HIV testing and care [16].
ipants had concerns about user error (n = 7/11) [17, 31, 33, The remainder of the studies reported on ‘‘intention to
38, 40, 43, 46]; followed by low accuracy (n = 6/11) [35, 37, link’’ following HIVST. In studies from HIC settings, the
38, 40, 46, 47], lack of counseling (n = 6/11) [31, 37, 38, 40, majority of participants reported that if they received a
43, 46] and HIVST not being free (n = 2/11) [33, 47]. reactive HIV self-test result they would seek for additional

123
AIDS Behav (2015) 19:1949–1965 1961

Studies n=14/23

Performed HIVST Did Not Perform HIVST

Ochako et al [31]
Carballo-Diéguez et al [33]
Lippman et al [43]

Greacen et al [40]
Katz et al [16]

Bavinton et al [48]
Supervised
De la Fuente et al [39] Bavinton et al [15]
Unsupervised

Chen et al [38]

Xun et al [47]
Gray et al [34]

Wong et al [51]
Marley et al [35]
Chakravarty et al [49]

0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100%

LOW MODERATE HIGH LOW MODERATE HIGH


Acceptability Acceptability

Men who have sex with Men


Female Sex Workers

Fig. 3 HIV self-testing experience among studies evaluating acceptability

testing and if diagnosed HIV-positive, then treatment (range collection tool, there was also a lack of compliance on how
81.6–100 %) [30, 33, 51]. A study in LIC setting reported that they assessed and measured the different values and pref-
50 % of MSM would seek post-test counseling and confir- erences. Qualitative data were sparse and an incomplete
mation of results and 75 % of FSW stated that they would go reporting of data in abstracts and reports limited the eval-
to a health facility for confirmation, after self-testing for HIV uation of quality. This lack of clear evaluation of values
[31]. Overall, no differences were found when analyzed by and preferences limited our understanding of collected
test type of specimen collection, educational level, having data.
performed an HIVST and type of approach.

Adverse Events Resulting from HIVST Discussion

There was little information on adverse events reported in Twenty-three studies reporting acceptability and other
reviewed studies. In this review, one study among MSM in values and preferences of KP regarding HIVST were
the USA, who had performed an oral fluid-based HIV identified. Values and preferences were largely consistent.
RDT, reported that complicated situations could lead to This may be because many of the included studies had
verbal confrontations or violence among participants who some similar study characteristics. For instance, the
self-tested or proposed self-testing with a sex partner. Also majority of included studies were from HIC settings
they reported that special circumstances, such as infidelity, (n = 18/23), among participants with high educational
could lead to coercively test a partner, a potentially more level (n = 11/23), using oral fluid-based RDT (n = 13/23),
adverse event [33]. No other serious adverse events were using unsupervised approaches (n = 9/23), and were
identified. almost exclusively among MSM (n = 23/23). Very few
studies in this review included FSW, PWID, transgender
Quality of Studies people (n = 5/23).
Evidence for high acceptability was evident among
Quality of studies varied. In general, studies did not report MSM in HIC settings using oral specimen collection. This
sufficient information about qualitative methods and data aligns with existing literature on HIVST, which suggest

123
1962 AIDS Behav (2015) 19:1949–1965

users (including the general population) may prefer oral supervised HIVST [16, 37, 42, 44] than for unsupervised
fluid-based HIV RDT to fingerstick/whole blood-based HIV HIVST [41, 47]. This may be because supervised HIVST is
RDT because they are reportedly easier to perform and are viewed as similar to current HIV testing services, which are
perceived to be less painful [52, 53]. Out of all studies often free of charge. KP may also be willing to pay more
reviewed, Chakravarty et al. reported the lowest accept- for unsupervised HIVST because it offers greater privacy;
ability of HIVST. However this study only reported which was a key benefit and value of HIVST, reported by
acceptability among HIV-negative MSM who were aware of KP.
HIVST and reported that they were ‘‘extremely likely’’ to All studies in the USA (reporting willingness to pay
self-test for HIV. Since the study did not report on other between US$1 to CUS$50) were conducted using oral
levels of acceptability, such as ‘‘somewhat likely’’, ‘‘likely’’ fluid-based HIV RDT [16, 45, 46], and prior to the US
or ‘‘very likely’’, we could not infer whether this is reflective Food and Drug Administration approval of the OraQuickÒ
of actual acceptability of HIVST among MSM [49]. In-Home HIV Test [55]. Currently, this product retails
Research is still ongoing and there are emerging reports direct to consumers for US$40 [56]. The studies reviewed
from KwaZuluNatal, South Africa which suggest that fin- suggest that reluctance to pay was only reported in studies
gerstick/whole blood-based HIV RDT can also be easy to were participants have performed an HIVST, also concerns
perform and accurate, when accompanied with clear about the cost of HIVST, were both in MIC and HIC set-
instructions, packaging and appropriate test system design tings. Thus, for HIVST to have higher uptake, it will likely
[54]. In April 2015, two fingerstick/whole blood-based need to be subsidized or free of charge to clients. So far a
RDTs recently satisfied the legislative requirements in the lowest price has been negotiated, for research purposes the
European Econonomic Area: the BioSure HIV Self Test professional use version of this test is available in Kenya
(BioSure Ltd, UK), sold online at £29.95 [58] and the for approximately US$11 [18] and in Malawi for US$3
autotestVIH (Aaz Labs, France) will be sold in pharma- [57].
cies around 23–28 euros [59]; as an additional option for Evidence on linkage to care and treatment among KP is
people to now their HIV serostatus. Various other products limited and requires further research. Two studies among
are under development and could be adapted for HIVST, MSM in the USA reported actual linkage to HIV testing
including painless or integrated lancets, simplified sampling and diagnosis and enrollment in HIV care and treatment
systems, integrated buffer delivery systems and shorter [16, 50]. Three studies reported that more than 80 % of
minimum and maximum reading time [11]. participants with a potential or an actual HIV positive test
Some studies report that participants desire access to result would seek confirmatory HIV testing and care [16,
counseling [37, 42, 44], while a study in Hong Kong SAR 30, 51]. Proactive approaches to support the unique needs
China with MSM, reported that 16 % preferred HIVST of KP may be considered and adapted, for example a study
because of the ‘‘lack of counseling’’ [51]. Ways to provide in Malawi among general population offering home (ART)
information about or how to link to counseling services, as assessment found a three-fold increase in linkage to ART,
part of HIVST, should therefore be considered including: compared to facility-based HIV testing [60]. It is essential
face-to-face through community health workers, internet- that users with a reactive HIV self-test result first link to
based, SMS or mobile phones, or computer-based programs. further testing and receive an HIV diagnosis; and that users
Studies with unsupervised or an unknown approach to also link to HIV prevention, care and treatment services, as
HIVST frequently reported concerns on user error and poor appropriate to their HIV status, in a timely manner. Special
accuracy. These concerns could potentially be overcome by attention should be paid to additional risks for KP,
providing links to support and counseling services and including young and adolescent KP. In highly criminalized
clear instructions for use. There might be a small contro- settings KP may be more vulnerable to delay or not to seek
versy with the benefit of privacy and the concern of an HIV services. Without such support for safe linkage to HIV
increased user error, depending on the approach, in our services, HIVST may be of limited benefit to KP in such
findings MSM were not strongly positioned that HIVST settings.
has to be performed strictly by a professional [37, 42, 44, We found no clear evidence to support adverse events as
51]. In particular, KP may need more information on how a result of HIVST, such as adverse emotional reactions to
user error can be reduced, accuracy rates and the need for positive tests, inter-partner violence, coerced/forced test-
confirmation; especially if HIVST is unsupervised. ing, psycho-social or mental health issues, and suicide or
Willingness to pay was difficult to compare across all self-harm. This is in line with a recent literature review
studies, as there were different price points and some used which states that very few studies report harm across var-
overlapping intervals. Overall willingness to pay was ious self-tests, including HIV; however it does note that
higher in HIC settings [16, 37, 39, 42, 44–46] compared to monitoring and reporting systems for harmful outcomes are
MIC settings [35, 41, 47] or LIC settings [31], and lower in rare [61].

123
AIDS Behav (2015) 19:1949–1965 1963

Limitations Open Access This article is distributed under the terms of the Crea-
tive Commons Attribution 4.0 International License (http://cre-
ativecommons.org/licenses/by/4.0/), which permits unrestricted use,
The majority of studies that met inclusion criteria were distribution, and reproduction in any medium, provided you give
among MSM and in HIC settings. Only two studies pro- appropriate credit to the original author(s) and the source, provide a link
vided data on user preferences among MSM and FSW [31, to the Creative Commons license, and indicate if changes were made.
35]. Our search was for KP, however due to the nature of
self-testing, people in prison or closed settings, would not
be eligible for HIVST. Almost all studies were observa-
tional and used a cross-sectional research design. Only one References
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