Acceptability and Barriers to HIV Pre-Exposure Prophylaxis in Atlanta's Adolescents and Their Parents

Abstract

Adolescents aged 13–24 years account for 23% of new HIV infections in Atlanta, indicating need for better HIV prevention strategies in this population. Pre-exposure prophylaxis (PrEP) is now approved for adolescent use. This study aims to understand the acceptability of and barriers to PrEP in adolescents and parents. We administered PrEP acceptability and barrier measures to HIV(−) 13–17 year olds and their parents from January to April 2016 in an adolescent clinic and emergency department in Atlanta, GA, stratifying by adolescent sexual activity. Acceptability scores (AS) and barrier scores (BS) were calculated by averaging survey answers 1–3. For AS, 1 was very unlikely to accept PrEP; concomitantly, BS near 3 indicated fewer barriers. Two-sample hypothesis testing, Pearson correlations, and linear regression were used. Of the 102 adolescent/parent dyads, 67% of adolescents were female, 94% black, with a mean age of 15.7 ± 1.5 years, and 31% were sexually active. Parents were 94% female, 96% black, with a mean age of 42.4 ± 8.9 years. AS averaged between somewhat to very likely to accept PrEP (2.4 ± 0.5 and 2.2 ± 0.6) in adolescents and parents, respectively. BS averaged between unlikely and somewhat likely to perceive barriers to PrEP (2.0 ± 0.4 and 1.9 ± 0.5) in adolescents and parents, respectively. The adolescent/parent dyad is likely to accept PrEP, regardless of sexual activity. Limitations include that nearly 70% of adolescents were not sexually active, and the study was conducted before PrEP approval by the Food and Drug Administration for those who are younger than 18 years. These results support future parent and adolescent education on PrEP.

Introduction

In 2016, Georgia had the fifth highest rate of new HIV infections in the country.¹ Fifty percent of the 41,934 individuals living with HIV in Georgia resided in the Atlanta Metropolitan Statistical Area, and 59% of new diagnoses were reported within this group of counties.² Adolescents and young adults aged 13–24 years account for 23% of new HIV infections in Atlanta.³

Adolescence is a unique period associated with distinct psychosocial and physical developmental changes,⁴ when they are vulnerable to engage in risky sexual behavior, and are at increased risk of HIV infection.⁵ The 2017 US Youth Risk Behavior Survey administered to high school students showed that 39.5% of students have had sexual intercourse and 3.4% before the age of 13. Forty-six percent did not use a condom the last time they had sex and only 9% had ever been tested for HIV.⁶ These data emphasize the need to expand currently available HIV prevention methods to adolescents.

Long-standing prevention methods for sexually acquired HIV currently include HIV testing and treatment, condom distribution, partner services, and circumcision.^7
–9 Pre-exposure prophylaxis (PrEP) with tenofovir/emtricitabine (TDF/FTC) combination, when taken appropriately, reduces the risk of HIV infection in high-risk individuals by 92%.^10

–15 In 2018, the Food and Drug Administration (FDA) approved the use of TDF/FTC for HIV prophylaxis in adolescents younger than 18 years.¹⁶

Despite the reported high rates of sexual activity in adolescents, the data on the effectiveness, acceptability, and barriers to PrEP in this population are not robust. PrEPARE, an Adolescent Trial Network study, did show high acceptability of PrEP in young men who have sex with men (MSM), in the slightly older 18–22 age range.¹⁷ More recently, the ATN 113 trial demonstrated high acceptability of PrEP in HIV-negative adolescent males aged 15–17 years. While this study indicated the need to explore PrEP in the adolescent population, the study also showed a need to further assess traditional adherence barriers and stigma-related concerns. The recent FDA approval of PrEP for use in patients younger than 18 years opens the possibility of scaling use among adolescents; however, data on overcoming barriers and adherence are still lacking.

In the United States, access to prevention services varies by state with some requiring parental consent, leading to potential increases in risky sexual behaviors due to unwanted disclosure of adolescent sexual activity to parents.¹⁸ While it is clear that changes in certain state laws are urgently needed to allow adolescent consent for prevention services, parental acceptability of PrEP has never been queried. This study explores the acceptability and barriers to PrEP from adolescent and parental perspectives to evaluate important elements to include in a PrEP implementation strategy.

Methods

This study was a single-center cross-sectional study of HIV-negative adolescents and their parents. Enrollment began January 2016 and ended May 2016. Before any study procedures, the Emory Institutional Review Board approved this study. Informed consent and assent were obtained from all participants and their parents or legal guardians.

Participants

Participants in this study included adolescents aged 13–17 years who attended either the adolescent medicine clinic and/or the emergency room at Children's Healthcare of Atlanta's Hughes Spalding campus. This is a freestanding academic pediatric hospital that sees over 50,000 visits each year in the emergency room in downtown Atlanta. The participants reported being HIV negative and were accompanied by their parent or legal guardian, who was also enrolled in the study.

Study procedures

After both the adolescent and parent signed informed consent, participants were asked to complete two 5-min long surveys. Parents and adolescents were separated at the time of completion of the survey to allow for privacy and confidentiality. Parents and adolescents were not able to review one another's questionnaire information. The dyads responses were paired together numerically for data analysis purposes.

Definitions

Acceptability

Acceptability was measured by a survey adapted from another study of PrEP use in racially diverse young MSM between ages of 16 and 20 years (Appendix A).¹⁹ Each question was scored using a Likert scale from 1 to 3, where 1 was very unlikely and 3 was very likely to accept PrEP.

Barriers

Barriers to PrEP were measured by adapting questions used to assess oral contraception use in adolescents.²⁰ Each question was scored using a Likert scale from 1 to 3, where 1 indicated significant barriers and 3 indicated few barriers to PrEP (Appendix B).

Sexual activity

Sexual activity was assessed based on self-report.

HIV negative

HIV status was assessed based on self-report.

Data analysis

Demographic and measure-level summaries were calculated overall and by child sexual intercourse status (no intercourse vs. intercourse) in children and their parents using means and standard deviations (SDs), medians and interquartile ranges, or frequencies and percentages as appropriate. Differences in these characteristics across child intercourse groups were evaluated using t-tests or Wilcoxon's tests for continuous variables and chi-square test or Fisher's exact test in discrete cases. Bivariate relationships considering demographic and survey characteristics (covariates) with child acceptability and barrier assessments (outcomes) were analyzed using ordinary least squares (OLS) linear regression. Covariates were retained for multivariable regression analyses if significant at the 0.1 level.

Items for the acceptability and barriers measures were summarized in children and parents using means and SDs and ranked from highest to lowest mean scores. For acceptability items, the highest mean item was ranked at 1 and the lowest at 11 for both children and parental responses and gauged for agreement via the Spearman correlation. Barrier assessment items for children and parents were dissimilar, and as such, agreement and paired item analyses across these groups could not be meaningfully quantified; however, child and parent responses are described individually. All analyses were performed in SAS v.9.4, and due to sample size and the exploratory nature of this work, statistical significance was determined at the 0.05 level for hypothesis tests and 0.1 level for OLS regression.

Results

Demographic characteristics

A total of 104 adolescent and parent pairs were surveyed in this study; however, 2 were excluded due to exclusion based on age. In the adolescent group, 67% were female, 94% were black, with a mean age of 15.7 years (SD 1.5). Thirty-one percent of patients were sexually active with no significant differences in sex or race between the intercourse and no intercourse groups. Age of those participants who were having intercourse was significantly higher than those who were not having intercourse (p < 0.001). Among the adolescents who were sexually active (N = 32), the mean age for first intercourse was 14.7 years (SD 1.4), with a median number of sexual partners of one. Nearly 10% of participants used drugs or alcohol before intercourse, and 35% did not use condoms during last intercourse, despite 72% having had condom education. Although no participants had sexual contact with a known HIV-positive partner, 17% had tested positive for a sexually transmitted illness (STI) different from HIV (Table 1).

Table 1.

Demographic Characteristics and HIV Risk Factors Among Sexually Active Adolescents and Their Parents

Characteristic	Overall, N = 102	No intercourse, N = 70 (68.6%)	Intercourse, N = 32 (31.4%)	p
Adolescent characteristics
Gender, n (%)
Female	68 (66.7)	50 (71.4)	18 (56.3)	0.131
Male	34 (33.3)	20 (28.6)	14 (43.7)
Race, n (%)
African American	96 (94.1)	66 (94.3)	30 (93.8)	1.000
Other	6 (5.9)	4 (5.7)	2 (6.2)
Age (years), mean ± SD	15.7 ± 1.5	15.4 ± 1.4	16.5 ± 1.4	<0.001
Adolescent survey (intercourse only)
Age at first intercourse, mean ± SD			14.69 ± 1.42
Sexual preference, n (%)
Female			13 (40.6)
Male			19 (59.4)
Men who have sex with men, n (%)	3	0	3 (100)
Number of partners, median (IQR)			1 (1–4.5)
Drugs before sex—yes, n (%)			3 (9.4)
Condoms during last sex—yes, n (%)			21 (65.6)
Pregnancy prevention last sex—yes, n (%)			21 (65.6)
Sexual contact with HIV+ person—yes, n (%)			0 (0)
Tested for STI—yes, n (%)			18 (56.3)
Positive			3 (16.7)
Negative			15 (83.3)
Positive HIV status, n (%)			0 (0)
Condom education—yes, n (%)			23 (71.9)
Parent characteristics
Gender, n (%)
Female	96 (94.1)	65 (92.9)	31 (96.9)	0.662
Male	6 (5.9)	5 (7.1)	1 (3.1)
Race, n (%)
African American	98 (96.1)	67 (95.7)	31 (96.9)	1.000
Other	4 (3.9)	3 (4.3)	1 (3.1)
Age (years), mean ± SD	42.4 ± 8.9	43.8 ± 9.9	39.7 ± 5.9	0.014 ^a
Parent survey
Conversations about sex—yes, n (%)	95 (93.1)	65 (92.9)	30 (93.8)	1.000
Frequency of sex conversations, n (%)
Never/once	21 (20.6)	18 (25.7)	3 (9.4)	0.058
More than once	81 (79.4)	52 (74.3)	29 (90.6)
Adolescent shares information about sex—yes, n (%)	64 (63.4)	42 (60.9)	22 (68.8)	0.444^b
School sexual education, n (%)
None	13 (12.8)	9 (12.9)	4 (12.5)	0.773
Abstinence only	8 (7.8)	7 (10)	1 (3.1)
Abstinence centered	7 (6.9)	5 (7.1)	2 (6.3)
Comprehensive	31 (30.4)	22 (31.4)	9 (28.1)
I don't know	43 (42.2)	27 (38.6)	16 (50)
Child sexually active, n (%)
No	62 (60.8)	58 (82.9)	4 (12.5)	<0.001
Yes	24 (23.5)	1 (1.4)	23 (71.9)
I don't know	16 (15.7)	11 (15.7)	5 (15.6)
Condoms during sex, n (%)
No	12 (30.8)	8 (57.1)	4 (16)	<0.001 ^c
Yes	16 (41)	0 (0)	16 (64)
I don't know	11 (28.2)	6 (42.9)	5 (20)
Not applicable	62	55	7
STI testing—yes, n (%)
No	78 (76.5)	63 (90)	15 (46.9)	<0.001
Yes	22 (21.6)	6 (8.6)	16 (50)
I don't know	2 (2)	1 (1.4)	1 (3.1)

N = 97 due to missing date of birth.

N = 101 due to no response in one survey regarding adolescent sharing information about sex.

N = 101 due to no response in one survey regarding condom use during sex.

IQR, interquartile range; SD, standard deviation; STI, sexually transmitted illness.

Bold indicates statistical significance (p <0.05).

In the parental group, there was also no difference in gender or race by adolescent sexual activity. The majority of parents had conversations about sex with their adolescent regardless of sexual activity. Parents who had more conversations about sex with their son or daughter trended toward those whose adolescent was sexually active (p = 0.058). Sixteen percent (16/102) of the parents responded that they did not know if their teenager was sexually active, and 28% of parents who thought their adolescent was sexually active did not know if they were using condoms or not.

Acceptability for PrEP use in sexually and nonsexually active participants and their parents

The average adolescent acceptability score (AS) was 2.4 ± 0.47 indicating that adolescents were moderately to strongly likely to be accepting PrEP (Table 2). There was no significant difference in adolescent acceptability between sexually active and nonsexually active adolescent participants (p = 0.801; Table 2), black versus nonblack (p = 0.170), and age older than and younger than 16 years (p = 0.655; data not shown).

Table 2.

Adolescent and Parent Acceptability and Barrier Scores

Characteristic	Overall, N = 102	No intercourse, N = 70 (68.6%)	Intercourse, N = 32 (31.4%)	p
Adolescent scores
Adolescent acceptability, mean ± SD	2.40 ± 0.47	2.40 ± 0.47	2.38 ± 0.47	0.801
Men who have sex with men acceptability, mean ± SD	1.8 ± 0.81		1.8 ± 0.81
Adolescent barriers, mean ± SD	2.04 ± 0.44	2.04 ± 0.45	2.03 ± 0.45	0.933
Men who have sex with men barriers, mean ± SD	1.6 ± 0.62		1.6 ± 0.62
Parent scores
Parent acceptability, mean ± SD	2.23 ± 0.60	2.18 ± 0.60	2.36 ± 0.59	0.151
Parent barriers, mean ± SD	1.91 ± 0.52	1.86 ± 0.49	2.01 ± 0.56	0.194

SD, standard deviation.

A secondary analysis conducted only on sexually active adolescents (n = 32) showed that female adolescents had significantly higher acceptability of PrEP relative to their male counterparts (p = 0.005). Adolescents who did not use condoms during last sexual intercourse (p = 0.047), or those who intermittently used them (p = 0.018), were also significantly more likely to be accepting PrEP (Table 3). Sexual preference, numbers of partners, and prior STI testing were not associated with higher AS. Multivariable analysis maintained the association of females (p = 0.010) and lack of or intermittent condom use (p = 0.039) as significantly associated with higher PrEP acceptance in adolescents (Table 3).

Table 3.

Sexually Active Adolescents Bivariable and Multivariable Acceptability and Barriers Regression Models

Characteristic	Bivariable			Multivariable		Bivariable			Multivariable
Characteristic	N	Acceptance, mean (95% CI)	p	Acceptance, mean (95% CI)	p	N	Barriers, mean (95% CI)	p	Barriers, mean (95% CI)	p
Adolescent characteristics
Gender
Female	32	2.58 (2.38–2.78)	0.005	2.56 (2.37–2.75)	0.010	32	2.19 (1.99–2.40)	0.018	2.41 (2.11–2.71)	0.020
Male	32	2.12 (1.90–2.35)		2.17 (1.95–2.39)		32	1.82 (1.59–2.05)		2.10 (1.80–2.39)
Race
African American	32	2.36 (2.18–2.53)	0.352			32	1.99 (1.82–2.15)	0.031	1.99 (1.86–2.12)	0.058
Other	32	2.68 (2.00–3.36)				32	2.69 (2.08–3.30)		2.52 (1.99–3.04)
Age (years)
≥16.0 (50th percentile)	32	2.42 (2.22–2.62)	0.382			32	2.12 (1.94–2.30)	0.053
<16.0 (50th percentile)	32	2.25 (1.91–2.59)				32	1.77 (1.45–2.08)
Adolescent survey
Age at first intercourse
≥15 (50th percentile)	32	2.27 (2.05–2.49)	0.153			32	2.01 (1.79–2.23)	0.810
<15 (50th percentile)	32	2.51 (2.26–2.76)				32	2.05 (1.80–2.30)
Sexual preference
Female	32	2.28 (2.01–2.55)	0.336			32	1.98 (1.72–2.24)	0.609
Male	32	2.45 (2.23–2.66)				32	2.07 (1.85–2.28)
Number of partners
1	32	2.38 (2.15–2.60)	0.998			32	2.03 (1.81–2.24)	0.942
>1	32	2.38 (2.11–2.65)				32	2.04 (1.78–2.30)
Drugs before sex
Yes	32	2.79 (2.25–3.33)	0.113			32	2.13 (1.59–2.66)	0.712
No	32	2.34 (2.16–2.51)				32	2.02 (1.85–2.20)
Condoms during last sex
Yes	32	2.26 (2.06–2.46)	0.047			32	1.89 (1.70–2.07)	0.010
No	32	2.60 (2.33–2.88)				32	2.31 (2.05–2.56)
Pregnancy prevention last sex
Yes	32	2.35 (2.14–2.56)	0.607			32	1.98 (1.78–2.18)	0.404
No	32	2.44 (2.15–2.73)				32	2.13 (1.85–2.40)
Tested for STI
Yes	32	2.39 (2.16–2.62)	0.883			32	2.05 (1.83–2.27)	0.810
No	32	2.36 (2.10–2.62)				32	2.01 (1.76–2.26)
Frequency of condom use
Never/sometimes	32	2.58 (2.35–2.81)	0.018	2.52 (2.30–2.73)	0.039	32	2.28 (2.08–2.49)	0.002	2.42 (2.15–2.70)	0.015
Always	32	2.20 (1.98–2.41)		2.21 (2.01–2.40)		32	1.81 (1.62–2.00)		2.08 (1.76–2.41)
Condom education
Yes	32	2.44 (2.24–2.63)	0.279			32	2.08 (1.88–2.27)	0.378
No	32	2.23 (1.91–2.55)				32	1.92 (1.61–2.22)

CI, confidence interval; STI, sexually transmitted illness.

Bold indicates statistical significance (p < 0.1).

Similar to adolescents, parents were also moderately to strongly likely to be accepting PrEP with AS of 2.2 ± 0.6. These scores did not differ by child sexual activity (p = 0.151; Table 2) or demographic groups (data not shown).

MSM were all in the sexually active category, and the data demonstrated moderate AS of 1.8 ± 0.81 (Table 2).

Barriers for PrEP use in sexually and nonsexually active participants and their parents

The average adolescent barrier score (BS) was 2.0 ± 0.44, indicating moderate barriers to PrEP as perceived by adolescents and did not differ significantly between sexually active and nonsexually active groups (p = 0.993; Table 2), gender (p = 0.111), race (p = 0.071), and age (p = 0.120; data not shown). Bivariate analysis of sexually active adolescents showed that female (p = 0.018) and nonblack adolescents (p = 0.031) had significantly fewer perceived barriers to PrEP uptake. Additionally, adolescents who did not use condoms during last sexual intercourse (p = 0.010), or those who intermittently used condoms (p = 0.002), and adolescent age older than 16 years (p = 0.053, cutoff 0.1 for regression analysis) were significantly more likely to have fewer barriers to PrEP (Table 3). In multivariable analysis, sexually active females (p = 0.020), nonblack participants (p = 0.058), and those with intermittent condom use (p = 0.015) had significantly fewer barriers to PrEP (Table 3).

The average parent BS was 1.9 ± 0.52, indicating moderate barriers to PrEP use, with no difference between child sexual activity groups (p = 0.194; Table 2).

The average BS for MSM was low moderate at 1.6 ± 0.62 (Table 2).

Agreement and priority of adolescent and parents PrEP acceptability and barriers

The Spearman rank correlation considering the ranks of mean acceptability items between adolescent and parent responses found that adolescent and parents disagree on what items are most important in accepting PrEP (Spearman r = 0.37). Table 4 compares adolescent and parent acceptability and barrier measures in rank order preference of mean individual items. The most common reasons for accepting PrEP among adolescents included to protect against HIV and to prevent transmission from an HIV-positive partner. Adolescents also recognized the need to continue condom use while on PrEP (Table 4). The most common measures for accepting PrEP among parents included their son or daughter having sex with an HIV-positive partner or having risky or casual sex (Table 4). The most common barriers to PrEP for adolescents included the lack of perception that adolescents are susceptible to HIV or the need for PrEP in a specific individual (Table 4). Similar to adolescents, the greatest barriers in parents was appreciating adolescent susceptibility to HIV and having sufficient PrEP education to support their child to take this medication (Table 4).

Table 4.

Agreement Between Patient and Parent Acceptability and Barriers Measures

Child Measure Items Likelihood to…	Child, mean (SD)	Parent Measure Items Likelihood to…	Parent, mean (SD)
Acceptability^a AS (1 = very unlikely to accept PrEP, 3 = very likely to accept PrEP)		Acceptability^a
1. Use condom while on PrEP	2.59 (0.68)	1. Give PrEP to child with HIV+ partner	2.57 (0.74)
2. Take PrEP to protect from HIV	2.58 (0.62)	2. Give PrEP to child with casual partners	2.53 (0.77)
3. Take PrEP with HIV+ partner	2.58 (0.72)	3. Give PrEP to child before risky sex	2.37 (0.81)
4. Take PrEP before risky sex	2.57 (0.70)	4. Give PrEP to child 28 days after sex	2.36 (0.78)
5. Take PrEP with casual partners	2.54 (0.66)	5. Give child PrEP to protect from HIV	2.33 (0.76)
6. Take PrEP 3 days a week	2.51 (0.69)	6. Give child PrEP to reduce HIV risk 50%	2.33 (0.78)
7. Take PrEP 7 days a week	2.43 (0.70)	7. Give child PrEP 3 days a week	2.25 (0.81)
8. Take PrEP to reduce HIV risk 50%	2.33 (0.74)	8. Give child PrEP 7 days a week	2.19 (0.83)
9. Take PrEP 28 days after sex	2.32 (0.79)	9. Give child PrEP >1 × a day	1.99 (0.86)
10. Take PrEP >1 × a day	2.19 (0.78)	10. That child will use condom on PrEP	1.89 (0.86)
11. Take PrEP with side effects	1.72 (0.68)	11. Give child PrEP with side effects	1.83 (0.78)
Barriers^b BS (1 = high barrier to PrEP, 3 = fewer barriers to PrEP)		Barriers^b
1. Take PrEP to prevent HIV	2.67 (0.57)	1. Give child PrEP to prevent HIV	2.52 (0.71)
2. Take PrEP despite side effects	2.23 (0.76)	2. Medication cost	2.07 (0.81)
3. Not worry partner would find out	2.23 (0.84)	3. Side effects of PrEP	1.95 (0.84)
4. Able to take pill daily	2.22 (0.79)	4. Not worry about others knowing child on PrEP	1.92 (0.82)
5. Not worry peers would find out	2.16 (0.86)	5. Not worry about transportation to get PrEP	1.86 (0.87)
6. Not worry parents would find out sexual activity	2.03 (0.83)	6. Not worry that child will have risky sex on PrEP	1.78 (0.85)
7. I am susceptible to HIV	1.47 (0.71)	7. Not concerned for medication pickup location	1.78 (0.86)
8. I need PrEP	1.30 (0.63)	8. Have sufficient PrEP education to give it to my child	1.65 (0.74)
		9. My child is susceptible to HIV	1.62 (1.22)

Acceptability agreement between child and parent is fair (Spearman r = 0.37).

Barrier items too disparate to calculate agreement.

AS, acceptability score; BS, barrier score; PrEP, pre-exposure prophylaxis.

Discussion

As HIV incidence continues to increase in adolescents and young adults, a better understanding of effective prevention methods in this population is needed. This study is unique as it aimed to determine the acceptability and barriers to PrEP in Atlanta adolescents, aged 13–17 years, as well as their parents. No other study to the authors' knowledge has tried to understand both perspectives to further improve potential implementation of PrEP in adolescents. The results show that overall, parents and adolescents have good acceptance and perceived some barriers for PrEP usage.

Those adolescents with intermittent or no condom use were significantly more likely to be accepting PrEP and were likely to have fewer barriers to PrEP. These data support the ATN 113 adolescent PrEP study and other adult studies that show that high-risk individuals are highly accepting PrEP,²¹ reflecting some recognition by the individual of their increase risk.^21
–23 Additionally, female adolescents were also more likely to take PrEP than male participants, speaking to the potential of PrEP as a prevention method that can be completely controlled by women without partner knowledge, overcoming challenges in condom negotiation.^24,25

With respect to barriers, previous studies have shown that cost, access, and adherence are major barriers for PrEP in young MSM aged 18 and 19 years.²² In adults, studies similarly show that cost and lack of readiness to adopt a daily medication regimen are the biggest barriers to implementing PrEP on a larger scale.²⁶ This study's participants felt cost to be a mild barrier, although recent FDA approval, as well as drug assistance programs, could help ease cost burden; however, there are still significant racial disparities in PrEP prescription and acquisition.^27,28 Nearly two-thirds of patients in the 12- to 17-year age range taking PrEP rely on Medicaid to cover the cost of the medication as opposed to 22% of 18–24 year olds and 13% of people older than 25 years.^29,30 Advocacy for programs such as Medicaid expansion is needed to decrease PrEP disparities among youth. Access to PrEP among adolescents may be confounded by beliefs and intentions of health care workers³¹ and may also be limited due to lack of willingness of those at risk to disclose their behaviors to their physician.³²

Regarding access, study parents had moderate concerns about medication pickup location and transportation. Thus, implementation strategies need to consider potential alternatives to increase medication availability (e.g., local pharmacies) and care. Decentralization of HIV prevention care through increase of PrEP education of primary care providers, as well as novel strategies for PrEP implementation (adolescent centered, home, telehealth, or Internet/phone-based programs), could help mitigate such concerns.^33
–35

Data from the ATN 113 study showed a significant drop in compliance over time. Participants who were nonadherent endorsed concern regarding stigma, specifically with regard to disclosure of sexual orientation and presumed HIV status, as well as a lack of interest in taking pills. Similarly, the PlusPills study demonstrated an impressive decrease in adherence as frequency of clinic visits mostly in the 18- to 19-year age group compared with the 15- to 17-year age group.³⁶ Our results indicate that overall adolescents in this study have few perceived challenges in taking PrEP every day with respect to compliance, but felt that they would be more likely to accept PrEP with decreased frequency in dosing. These data support the need for further research on alternative prescription strategies such as intermittent dosing or injectable compounds, as well as development of compliance strategies that will allow this population to stay in prevention care.

Parent-specific barriers included the potential increase in high-risk behaviors while on PrEP, as well as concerns that implementation of such interventions may communicate implicit approval for risky sexual behavior, as shown in prior studies with interventions for human papilloma virus (HPV) vaccine intervention.³⁷ Based on the current data, we know that youth are already engaging in high-risk behaviors even before PrEP and the increase STI surveillance during PrEP may actually help identify youth with STIs earlier, eliciting treatment and decreasing transmission.⁶ Nonetheless, there are data linking PrEP to increasing rates of STIs and parental concerns may be valid. Implementation strategies in adolescents should continue to stress the importance of condom use to prevent other STIs different from HIV.

Above all, the lack of perceived HIV risk was the largest barrier to taking PrEP in both adolescents and their parents. Both adolescents and their parents had difficulty in assessing who is at risk and when PrEP initiation was indicated. Adolescents viewed PrEP as a general prophylactic method against HIV, but parents were inclined to allow an adolescent to take PrEP if there was a specific risk factor for HIV. Both parent and adolescent answers demonstrate that the biggest barrier to PrEP is their own notion of HIV risk and susceptibility to this virus (Table 4). Low HIV risk perception, poor PrEP, and HIV knowledge can negatively influence preventive interventions like PrEP in the adolescent population.^38,39 Nearly three-quarters of adult MSM have shown an interest in using PrEP after learning its prevention potential,⁴⁰ and pediatric studies assessing education as a method to overcome barriers in the implementation of other STI prevention strategies such as HPV have also been successful.⁴¹ Thus, future adolescent PrEP implementation strategies need to consider interventions to increase HIV and PrEP knowledge while focusing on individual identification of HIV susceptibility.³⁷

This study has several limitations. First, it was conducted at a single site, limiting its generalizability, and relied on agreement of both the parent and the adolescent to participate. This recruitment strategy excluded participants who may have come alone or with another adult but gave us the opportunity to obtain parental perspectives simultaneously, which will be important at the time of implementation. Second, despite providing a safe confidential environment and separate rooms for survey completion, we may have incurred misclassification bias as we relied on self-report for sexual activity and HIV risk factors. Third, PrEP was FDA approved after the survey was completed, and with the medication gaining more popularity in media, the AS and BS might have been impacted and made less generalizable than if this study were conducted after FDA approval. Finally, our sample included both sexually active and nonsexually active adolescents, as we wanted to understand the overall adolescent perspective regardless of risk. This may have limited our ability to better understand issues for specific at-risk populations but gave us the opportunity to understand the lack of information that exists about HIV and PrEP in adolescents and their parents. The study could have been made more generalizable by enrolling only those who are sexually active to focus on at risk populations.

This study is the first of its kind to explore a parental perspective on PrEP in adolescents. It shows that parents and adolescents have a high acceptability and few barriers for PrEP use as an HIV prevention tool. It also indicates discrepancy in parent and adolescent priorities in rationale for PrEP use and shows the need for continued efforts to educate parents and adolescents alike on HIV risk assessment and appropriate use of PrEP. An effective PrEP implementation strategy should include ways to increase knowledge of perceived HIV risk among adolescents and parents, methods to optimize adherence, and maximize access of this prevention tool for adolescents.

Footnotes

Acknowledgments

A.F.C.-G. has received research support from Gilead and Theratechnologies. For the remaining authors, nothing was declared.

Author Disclosure Statement

No competing financial interests exist.

Appendix A

Appendix B

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