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. Author manuscript; available in PMC: 2024 Mar 13.
Published in final edited form as: J Adolesc Health. 2023 Sep 6;73(6):1002–1009. doi: 10.1016/j.jadohealth.2023.07.002

Utilizing Digital Health Technology to Increase Sexual Health Care Access: Youth Preferences on Self-Collect, Mail-In Sexually Transmitted Infection Testing in a High Sexually Transmitted Infection Prevalence Area

Saumya S Sao a,*, Ruoxi Yu a, Sadie Abboud b, Maclaine Barre-Quick b, Sanyukta Deshmukh c, Runzhi Wang a, Jenell S Coleman a
PMCID: PMC10935575  NIHMSID: NIHMS1968628  PMID: 37676195

Abstract

Purpose:

The COVID-19 pandemic highlighted the need for innovative approaches to delivering care. Self-collect, mail-in sexually transmitted infection (STI) testing could address barriers to in-person STI testing, particularly for youth, who bear a disproportionate burden of STIs. This study sought to obtain youth input on the development of a free self-collect, mail-in STI testing program.

Methods:

Focus group discussions (n = 5, 45–60 minutes each) were conducted with 28 youth ages 14–19 years old living in Baltimore, Maryland. Focus group discussions were based on a conceptual framework of patient-centered health-care access, and a prototype online program was discussed. Transcribed data were coded thematically. Memos were written to synthesize findings and identify representative quotes.

Results:

Participants noted existing barriers to in-person STI testing barriers including individual-level (e.g., lack of knowledge), interpersonal-level (e.g., stigma), and structural-level (e.g., financial). Although participants expressed concerns about self-collect, mail-in STI testing (e.g., accuracy of self-swabbing), there was overall acceptance of the program, and many felt it would address current barriers to testing. Opportunities to improve the testing program included all four steps of testing process: kit ordering, receipt of the kit and swabbing, post-testing experience, and communication of results and treatment. Specifically, participants desired expanded shipping options to schools, and mail drop-off points such as lockers and local convenience stores; more transparency about testing and treatment; and hearing directly from health-care providers to assuage any concerns.

Discussion:

Self-collect, mail-in STI testing was favorable among youth, and could be a viable option for increasing youth access to STI testing.

Keywords: Self-collect STI testing, STI testing, Youth, Sexual health, STIs, Digital health


Sexually transmitted infections (STIs) remain a concerning public health problem in the United States, with more than 2.2 million reported cases of Chlamydia trachomatis (CT), Neisseria gonorrhoeae (NG), and syphilis in 2020 [1]. These numbers reflect the sixth consecutive year of increasing incidence rates, now an all-time high [2]. Moreover, there exist significant racial and ethnic disparities in STIs: in 2018, Black females had five times the rate of reported CT cases compared to White females [3]. Rates of STIs are particularly concerning among adolescents and young adults ages 15–24 years old; although youth make up 25% of the sexually active population in the United States, they account for half of all new STI cases in the United States each year [4]. STIs can cause significant consequences among this age group because untreated and recurrent STIs such as CT and NG increase the risk of HIV acquisition, adverse birth outcomes, ectopic pregnancy, and pelvic inflammatory disease [3,5,6]. Those with recurrent pelvic inflammatory disease have an increased risk of infertility, ectopic pregnancy, and chronic pelvic pain [7].

Within the United States, Baltimore City bears a disproportionate burden of STIs. According to 2021 data from the US Centers for Disease Control and Prevention, Baltimore City has the fourth-highest rate of STIs in the United States [8] The burden of STIs is also extremely exacerbated among youth living in Baltimore: in 2018, youth represented 16% of the city’s population, but accounted for 60% of CT, 41% of NG, and 16% of syphilis cases [9].

To prevent these high rates of STI infection and related morbidity, STI testing rates among youth must be increased. However, barriers make it difficult for youth to get tested—a United States national survey of youth ages 15–25 found that rates of STI testing were under 20% [10,11]. Individual-level barriers to testing include limited knowledge about asymptomatic STIs, lack of certainty around where and how to get tested, fear of testing positive, and lack of skills to communicate with health-care staff [1214]. Interpersonal barriers include concern about being seen in clinics, as STI testing carries stigma around peers and could be damaging to one’s reputation [12]. Additional barriers exist at the level of health services infrastructure (e.g., location and visibility of clinics, costs and insurance coverage, and waiting times) [13].

The COVID-19 pandemic highlighted the need for new and innovative approaches to delivering sexual and reproductive health care given the rapid closure of clinical care sites that are utilized by youth, and given that STI rates among youth continued to rise during the COVID-19 pandemic [15]. Self-collect, mail-in STI testing programs became widely adopted by several organizations [16,17]. Self-collected STI testing may prove advantageous for youth in particular, addressing youth barriers to STI testing such as lack of privacy and confidentiality, difficulty finding and accessing a testing site, and discomfort with providers or clinic spaces [11,18]. One self-collected strategy involves online STI test kit ordering. These types of programs require internet access, and although there are sociodemographic disparities in access among US citizens, increases in mobile phone access is reducing the gap between groups [19,20]. Another strategy involves retrieving STI test kits for use at a nonclinic site. Two studies conducted among college-age students in the United States found that the majority of the youth participants were amenable to self-collect, take-home testing [21,22].

Despite the availability of these self-collected STI programs, it is not known if they involved youth in the creation of the program. Consequently, we conducted focus group discussions (FGD) with youth living in Baltimore City, a high-STI prevalence area to receive feedback on a prototype self-collect, mail-in STI testing platform. The objectives of the study included: 1) to understand the perceived barriers and facilitators to STI testing among youth that could be addressed by self-collect, mail-in STI testing, 2) to identify the perceived benefits of self-collect, mailin STI testing for youth, and 3) to identify youth preferences to tailor self-collect, mail-in STI testing programs to youth. Exploring such preferences can provide critical insights to improve youth access to STI testing in the face of increasing STI rates.

Methods

Setting and sample

This qualitative study was conducted virtually over an audiovisual platform (Zoom Video Communications, San Jose, California) in October 2021 in Baltimore City, Maryland, United States We conducted five semi-structured FGDs with 5–6 adolescents each. Flyers about an opportunity to give feedback via a research study on youth access to sexual and reproductive health care were distributed to four public high schools in Baltimore City. The four schools (three mixed-sex and one all-girls) were selected because they had a large student enrollment and were each located in different regions of Baltimore City. The study investigators were not allowed to directly recruit youth participants, so school teachers were identified, and these teachers distributed the flyers to their schools. Any youth seeking sexual and reproductive health education, care, or advocacy was allowed to participate.

Procedures

Enrolled participants were given access to a digital health prototype one month before FGDs. A semistructured FGD guide was developed using a conceptual framework based on the Levesque et al. dimensions of health-care access (Table 1 and Figure 1) [23]. This “Conceptual Framework of Access to Health Care” posits that health-care access involves five dimensions including approachability, acceptability, availability/accommodation, affordability, and appropriateness. Youth consumers of self-collect, home-based STI testing and health-care provider stakeholders were involved in the design of the FGD guide. This study employed human-centered design to elevate youth voices and involve them in iteratively improving the construction of a platform meant to specifically serve youth. FGDs were not stratified by age, gender, or school. Each FGD was staffed by two trained facilitators (ages 20–28) with one interviewer and one notetaker. Facilitators and participants had previously established rapport as all individuals were part of a larger yearlong sexual and reproductive health education program. This preexisting relationship was meant to allow participants to be more candid and open with their responses. The interviewer asked questions from a prepared script, using probes to elicit full responses. The notetaker observed participants (tone of voice, expressions, body language) and monitored the chat function, and any written communication in the chat was added to the audio transcript. Participants were strongly encouraged to have their video cameras on during the discussion, but video was not enforced.

Table 1.

Content of the FGD guide mapped onto the Levesque framework

Interview guide domain Levesque framework domain Interview guide topics

1. Introduction N/A Definition of “STI" and HIV
Types of STIs
Common symptoms of STIs and HIV
Definition of “testing positive"
2. Availability of in-person STI testing Availability and accommodation Barriers for youth that prevent STI testing in a clinic
3. Accommodations to make mail STI testing desirable Availability and accommodation Review of the hypothetical mail STI testing program design (video and discussion)
Shipping options for MAIL-IN STI testing program
Swabbing locations for home testing
4. Affordability of STI testing and treatment Affordability Affordability of STI testing
Affordability of STI treatment
5. Approachability and acceptability of mail STI testing Approachability
Acceptability
Trust in home testing results
Desire for contact with health-care providers during and after the process Comfort with health-care providers of the hypothetical testing program
Swabbing infographics
Communication preferences during the process of ordering a test kit to receiving results
6. Conclusion Acceptability
Appropriateness
Overall, how easy is it to use?
Overall, would you use it?
Overall, would you share with friends?
What would you change about it (if not already stated)?

FGD = focus group discussion; STI = sexually transmitted infection.

Figure 1.

Figure 1.

Domains of Levesque framework.

General information regarding STIs and STI testing was provided at the beginning of the FGD. Participants were informed that they would be shown the design of a prototype self-collect, mail-in STI testing program hosted on an online platform and that their feedback would be used to launch the program in the following months. The testing program was stated to be free of cost to youth, so questions on how much youth might pay for this service were not included. Next, facilitators showed a brief, one-minute video about the prototype program (developed by the study investigators, script available in Supplemental Material) that explained the testing process from start to finish. Participants were shown an example of the swabbing instructions for the vaginal site (Supplemental Material). They were also informed that users could swab their throats, anuses, and penises with a meatal swab (i.e., a swab on the rim of the urethral opening, not requiring insertion of the swab into the opening). They were informed that kits included a return envelope that was already paid for and addressed to the lab but that they would need to take completed kits to a United States Postal Service mailbox if their personal mailbox did not support outgoing mail. Next, facilitators showed the prototype online platform, order page with information on the steps of testing, a list of Frequently Asked Questions (Supplemental Material), and the option of video counseling and treatment for those who test positive for an STI. Finally, participants were asked about acceptability of the program by answering the following questions: overall, how good do you think the home-based STI testing platform is, do you think you would be likely to use it once the platform launches, and do you think your friends would use this.

The FGDs lasted an average of 45 minutes (ranging from 40 minutes, 20 seconds to 50 minutes, 8 seconds). Questions were asked in each section by the facilitator until no new information was generated or until the topic was saturated. FGDs were recorded with identifying data removed upon transcription. Notes taken by the notetaker were kept on a separate deidentified file but linked to the FGD during which the notes were taken. This study received ethical approval from the Johns Hopkins Medicine Institutional Review Board (IRB00293887). Prior to the FGD, participants went over informed written consent. Participants were financially compensated for their participation.

Data analysis

Two investigators examined all transcripts for grammatical or technical errors. All qualitative analysis was performed in NVivo (QSR International, Melbourne, Victoria, Australia) by four investigators. All transcripts were anonymous, and no investigator analyzed a transcript that they had facilitated, so as to not introduce bias into the analysis. To start, inductive coding methods were utilized: all investigators created codes as they read the transcript. Investigators then came together to discuss similar emergent themes and to create a set of the codes that would be used for domains and subthemes. During this discussion, existing frameworks were utilized to generate codes as well (i.e., a more deductive approach was utilized). Data from each FGD were coded thematically with a quality check for consistency between coders. The quality check included use of the inter-rater reliability tool in NVivo and discussion between investigators for discrepancies. Memos were written for each FGD. Study investigators then met to discuss and review themes from all consolidated memos and identified salient subthemes and representative quotes.

Results

FGD participants included 28 adolescents, ages 14–19 years old (mean 15.9, standard deviation 1.1). Participants self-identified as: 16 (57.1%) Black/African-American, 8 (28.6%) Asian-American, 2 (0.07%) White, and 2 (0.07%) Hispanic/Latino. Participants self-identified as 25 (89.3%) female and 3 (10.7%) nonbinary. Two (7.14%) were assigned male at birth. Of the 28 participants, 8 (28.6%) had previously had any kind of sex.

Three domains with subthemes were created (Table 2): 1) barriers to in-person STI testing that may be addressed by self-collect, mail-in STI testing; 2) concerns about self-collect, mail-in STI testing; and 3) youth preferences to improve the prototype STI testing program.

Table 2.

Summary of emergent domains and themes

Domain Subthemes

Barriers to in-person STI testing • Individual-level barriers (i.e., lack of knowledge)
• Interpersonal-level barriers (i.e., controlling partners, difficulty talking to parents/guardians, fear of peer ridicule, fear of interaction with health-care providers, fear of positive results)
• Structural-level barriers (i.e., transportation, cost, insurance navigation, treatment cost)
Concerns about mail-in STI testing • Concern about accuracy of self-collected sample
• Reservations about the platform
• Concern about treatment costs
Youth preferences and opportunities to improve mail-in STI testing • Improvements to ordering a kit (i.e., info on accuracy of kit, credibility of the platform, discreet packaging, info on treatment, shipping options)
• Improvements to receiving kit and swabbing (i.e., tracking options, increasing availability of places to swab, swabbing instructions, support and hotline options)
• Improvements to the post-testing experience (i.e., availability of support and resources after testing, tracking options)
• Improvements to the testing results experience (i.e., multiple communication options, communication preferences, availability of health-care provider support)

STI = sexually transmitted infection.

Barriers to in-person sexually transmitted infection testing

Perceived barriers to in-person STI testing included individual-level, interpersonal-level, and structural-level barriers (Table 3). Individual-level barriers included a lack of knowledge of when and where to get tested. Some participants shared how misconceptions about sexual activity and STIs may prevent youth from accessing STI testing.

Table 3.

Barriers to in-person STI testing addressed by self-collect, mail-in STI testing

Subtheme Representative quote Characteristics of participant

Individual-level barriers
Lack of knowledge about where to get tested “Just not knowing that there are resources to do this (STI testing) is a pretty large barrier because prior to this, if you asked me, ‘Are there clinics or anything to do this?’ I would not know the answer." 15 y.o. female, not sexually active
Lack of knowledge about sexual health “There’s a lack ofknowledge and almost, ignorance. because some people believe thatthey did a certain move or a certain thing during intercourse that protects them from getting STIs or STDs."
“It’s like confusing, like what is losing virginity? Like maybe it’s losing your oral virginity, or genital virginity, but a lot of people may not know what it actually consists of. So they may not count certain situations as them ‘losing’ that (their virginity), so they may not know. I can get an STI or STD from this activity."
“I know some people still might not know how, you can, like, get those diseases. They might just be like careless. because those are like diseases you can get multiple times. If they don’t take the precaution not to get them, they are going to only get the [STI] test one time and forget it another time."
y.o. female, sexually active

y.o. female, sexually active

16 y.o. female, sexually active
Interpersonal-level barriers
Discomfort with parents “Andjust really being scared because like obviously if you’re going to go get tested, you had some type of sex, whether it is oral, or like everything, and you don’t really feel comfortable telling your mom or guardian." 17 y.o. female, sexually active
Controlling partner “They (a young person) might not be able to travel to any health clinic.. Like, let’s say you’re in like a controlling relationship where your partner won’t let you get out of their sight." 18 y.o. nonbinary, sexually active
Stigma of getting testing “[Other people] may assume like oh you have multiple sexual partners, or like you’re just like doing things that you may not be very proud of but that may not be the case." 17 y.o. female, sexually active
Stigma of testing positive “I know there’s like a lot of bad connotations associated with like having STIs and being diagnosed with those sorts of things, so I guessjust like feeling embarrassed ofbeing like, actually going the extra mile and like actually taking the test."
“I’d be worried about stigmatization, like your friends or family or just people you know. Like, if you live in a specific neighborhood and everybody finds out you’re like HIV positive and you get shunned for it."
y.o. female, sexually active

y.o. nonbinary, sexually active
Confidentiality “First, I don’t even know where the [school] nurse’s office is. I’ve never been. I don’t even know where it would be. And then that’s just also the idea of like, someone who like you don’t really trust, knowing that like, you’re like, taking that test, and it’sjust kind of feels like an invasion of privacy almost." 15 y.o. female, sexually active
Structural-level barriers
Financial “[Someone] might be scared to go to the clinic because they think they might have to pay for a doctor."
“You don’t want to tell your parents to buy [STI testing] because you don’t want them to judge you. And you don’t have any money because like you don’t have a job, you’re a teenager, so yeah."
15 y.o. female, sexually active
15 y.o. nonbinary, sexually active

STD = sexually transmitted disease; STI = sexually transmitted infection.

Interpersonal barriers included difficulty discussing testing with parents/guardians, fear of parents/guardians receiving insurance notifications of STI testing, a fear of being seen in a clinic by peers who would ridicule/judge them, a fear of having to interact with health-care providers, and controlling or abusive relationships that would not allow privacy to seek in-person testing.

Structural barriers included transportation to clinic, cost of testing and treatment, and not having insurance or not knowing how to navigate insurance without a parent/guardian. Participants did not feel that asking a parent/guardian to assist with transportation to a clinic for STI testing would be a viable option. Almost all participants agreed with the reality of financial barriers, as most were not financially independent, and so may need to tell parents in order to pay for any costs associated with STI testing and face potential judgment about their sexual activity as a result.

Concerns about mail-in sexually transmitted infection testing

Three main concerns emerged about self-collect, mail-in STI testing: 1) concerns about accuracy, 2) reservations about the testing platform, and 3) concerns about treatment costs after testing positive.

Concerns about accuracy of self-collected sample.

Youth believed they might collect their samples incorrectly, and therefore, were unsure if they could trust the test results. A participant wrote in the Zoom chat: “I would trust it overall, but definitely some doubt because I’m the one doing it” (14-year-old, female, not sexually active). One participant suggested that they had still want to see a doctor for testing, in addition to the self-collect test: “just to make sure that the result is correct or false, go see your doctor. maybe that result might be a false result because of some error” (17-year-old, female, not sexually active).

Reservations about the platform.

Participants expressed some reservations about using an online platform for medical tests without knowing much about the facility the program was run by:

“I feel like, you won’t really trust it unless you know what medical facility it is. Like if you know more about the people in charge of it, it makes it easier to trust it.”

(16-year-old, female, not sexually active)

Concern about treatment costs.

Although the prototype test kit itself would be free to all youth, potential medical treatment for those who tested positive may still require payment. They stated that it could be “overwhelming, knowing (that one was positive), and not having the financial situation to do anything about it” (15-year-old female, not sexually active) Another participant shared,

“Yeah, I think it might be a barrier because it’s like, if you do test and you test positive then it’s like, what can you do because you can’t pay for it.”

(15-year-old, non-binary, sexually active)

As a result, a few participants stated that information about treatment for STIs should be clearly stated on the ordering platform, as concerns about testing positive and covering treatment costs may dissuade youth from testing in the first place. One participant, however, described informing people of the costs of STI treatment on the testing platform to be “a double-edged sword because some people really need to know [the information] and some people, if they know, they won’t [get tested]” (18-year-old, nonbinary, sexually active).

Youth preferences and opportunities to improve mail-in sexually transmitted infection testing

Youth made recommendations for changes to the proposed testing program (Figure 2). Feedback was summarized into four categories: 1) improvements to ordering a kit, 2) improvements to receiving kit and swabbing, 3) improvements to the post-testing experience, and 4) improvements to the results experience. Overall, youth were enthusiastic about the prospect of mail-in STI testing and remarked that they would utilize the service if it were to launch.

Figure 2.

Figure 2.

Youth suggestions to improve the prototype STI-testing platform.

Improvements to ordering a kit.

Participants’ desired information on the digital platform that boosted legitimacy of the testing program: they suggested adding information on the accuracy of the test kits and transparency surrounding the organization’s distribution of the kits and determination of the results. One participant recommended adding “accuracy statistics of the test kit...and also just reviews and like medical people’s opinions on the test as well” (17-year-old, female, not sexually active). Participants also suggested that information on treatment be laid out on the website to encourage people to get tested and emphasize that treatment was manageable and affordable.

Participants also stated that discreet packaging was key for a variety of reasons, including needing to hide something from an abusive partner, parents, or others. One participant asked, “What if there is a way to like hide it as if it’s like another item, or another product?” (16-year-old, female, sexually active). Another participant recommended being able to add specific delivery instructions for the package for additional privacy:

“Some things I feel like my parents open it, depending on the mood they are in. Do you think maybe on the packing information, or like while we’re ordering it, there can be like special directions? Like where you would rather have your package placed?”

(15-year-old, female, not sexually active)

Participants also recommended having more shipping options on the platform besides just a house, such as schools and Amazon lockers, or giving advice on how to pick up from a Walgreens or CVS. One participant shared this sentiment:

“If you’re trying to keep the STI kit from your parents so they don’t have access to it, I think having the kit available at places like a counselor’s office or something at school so you can test yourself at school and then drop it off somewhere.”

(16-year-old, female, not sexually active)

Participants further remarked that increasing the options of test kits to being available in school could help with privacy; some felt that their bedrooms and/or bathrooms at home were private, but some felt that they were not.

Improvements to receiving kit and swabbing.

Participants recommended that people be sent specific tracking information so that they could anticipate the arrival of their test kit, in case they wanted to hide it from others as soon as it was delivered. Participants further suggested that in addition to the swabbing infographics they were shown (Supplemental Material), a video and animated infographic should be added to the website to help clarify the swabbing process. One participant shared that for swabbing, they wanted:

“A video with like more commentary. I’m more of like an audio learner, like I learn through people explaining things. And then on top of that, if you could have a physician in that video, kind of like explain it in their own words, on top of the infographic, like animated.”

(15-year-old, female, not sexually active)

Finally, participants wanted options for support (such as a text and call hotline) during the swabbing process, to ensure accuracy and reduce fear around testing:

“I think possibly like a text option, or even just calling for more specifics... I can see why it might be like kind of scary for some people.”

(15-year-old, female, not sexually active)

Improving the post-testing experience.

Participants emphasized that resources be included in the kit that were tailored toward youth, to decrease anxiety while waiting for test results or anticipation of testing positive for an STI. They recommended that additional resources be included in the test kit, such as access to support groups, information about the program’s hotline, and how to tell a partner if they were to test positive. One participant further shared:

“When that happens (a person tests positive), that’s a very personal moment for the person. And I think that the easiest thing then would be: here are some resources that you can access right now to find out a little bit more. These are trusted resources, here are some support groups, if you need people to talk to you about it. Here’s our hotline, just stuff like that”

(17-year-old, female, sexually active).

Participants were curious about steps to after testing positive, and recommended that such information be included in the kit:

“Is there like a certain procedure that you go through with telling other partners and like how to like move through the whole process after you’ve got tested...”

(15-year-old, female, not sexually active)

Improving the results experience.

Finally, participants had suggestions on how to improve communication of STI test results. Participants remarked that there should be a variety of communication options available, as some youth might have their texts monitored, not be able to talk on the phone, or might not want to receive information about STI testing to their school email. They recommended that youth be able to if they wanted to be contacted by text, call, or email, and that test results be available on both a mobile and desktop format. One participant shared:

“You may want to use your phone to do it (get results), because like on the computer, that’s a big screen and so maybe those annoying siblings can just come out of nowhere and start peeking. But if it’s on your phone, it’s small, so that would be better.”

(15-year-old, female, not sexually active)

Furthermore, participants wanted health-care providers to be available to talk to after testing and wanted the option of a short appointment even if testing negative. One participant shared what they would want if testing positive:

“You will certainly want to talk to someone... You have to process it first by yourself, but you eventually have to talk to someone. And I think a doctor reaching out to you in that case might help. And telling you that it’s manageable too.”

(16-year-old, female, not sexually active)

One participant emphasized that a provider reaching out would also help patients who were in denial of their results or who would not seek care otherwise:

“There is a chance that if you just emailed them they could choose to ignore it, just if they don’t want to acknowledge that they did get positive, then like having someone actively reach out might encourage them to actually seek proper care.”

(15-year-old, female, not sexually active)

Discussion

A national survey of youth ages 15–25 recently found that despite high rates of STIs, most sexually active youth do not receive STI testing [11]. Thus, creating an accessible program that addresses the currently perceived barriers to STI testing among youth could be extremely beneficial. Studies have shown that such self-collect STI testing may have high acceptability in the United States, particularly for those with history of STI or who are at higher risk of STI [21,22,2426]. In this study, after introducing the prototype free online self-collect, mail-in STI testing program, youth participants expressed overall approval of this option of STI testing. Participants felt that the program could address key barriers to STI testing such as transportation, cost, and confidentiality concerns.

Youth participants were probed about the barriers they face to in-person STI testing, and barriers at individual-, interpersonal-, and structural-levels emerged. These barriers included a lack of knowledge on where and when to receive testing, lack of transportation to testing sites, difficulty navigating insurance, high cost of testing, difficulty telling parents, and the stigma associated with getting tested. These perceived barriers in-person STI testing are well documented in the literature [1013].

Our study found that youth had concerns about self-collect, mail-in STI testing. Participants’ main concerns were regarding the validity of the kit, lack of settings to accommodate maximum privacy, and potential treatment costs. Previous literature on preferences to mail-in testing, both among nonyouth and youth populations, similarly highlighted distrust of self-collected samples and mailed samples as major barriers to returning testing kits [22,24]. Some existing self-collect, mail-in STI testing programs have reported widely varying return rates, with some being as low as 30% or as high as 65% [16,17,27].

Participants suggestions to improve self-collect, mail-in STI testing for youth addressed the concerns they had. Youth preferences to improve mail-in STI testing included changes to the kit-ordering process, receiving the kit and swabbing, the post-testing experience, and the results experience. Participants emphasized the importance of a variety of options throughout the testing process, in terms of expanding options regarding communication methods, shipping options, support during and after testing, and follow-up with health-care providers after testing. Because participants were youth, variety in options was of utmost importance so as to avoid parents/guardians who may not approve of sexual activity among the youth. Participants advocated for test kits being available in spaces that are easily accessible to youth, such as schools and libraries, or available to ship to schools and Amazon lockers. Test kits could further be made available in clinic locations. Participants did not discuss options for drop-off locations of completed kits, but further work could be done to identify locations where youth could drop off completed kits beyond the United States Postal Service mailboxes included in the design of our prototype platform. Further work would also need to be done to create infrastructure for securing completed kits and delivering them to a lab for processing. Participants also suggested that resources be developed to make youth more comfortable with testing, such as an anonymous chat feature or call-in hotline.

Our findings also speak to the need for greater STI testing education targeted toward youth. Participants expressed a lack of knowledge regarding the impact of sexual activity, fears of testing, and lack of knowledge for when and where they should be STI tested. These perspectives highlight a need for more comprehensive sexual health education and efforts to encourage self-empowerment in health care–seeking. With mail-in STI testing becoming an increasingly common option, it could be beneficial for youth to learn about the option of self-collect STI testing either at home or another non-clinic based STI testing location like in their communities and schools. Furthermore, our data revealed that youth desired to maintain some level of interaction with health-care providers, which affords an opportunity for clinics to expand STI testing access to their patients outside of routine in-person clinic visits. Innovative programs could allow patients to self-order a test kit through a secure portal and undergo virtual counseling and treatment as needed. This strategy could also be utilized to increase rates of retesting at three months for those who previously tested positive for an STI. The prototype presented in this paper was highly favorable among participants because the workflow shown to youth included linking them to care after testing positive. Therefore, self-collect, STI testing platforms could be highly favored if used in conjunction with clinical care.

Limitations

Although this study used a comprehensive discussion guide based on literature with a framework to assess health-care access, some limitations should be considered. Previous literature emphasizes test cost and insurance cost as significant limitations in current mail-in, online STI testing programs [28]. As we proposed a no cost option, feedback from youth participants in this study focused more on potential costs of treatment if one was to test positive for an STI, highlighting youth preferences for free testing and treatment. Participants were self-selected as they voluntarily participated in the discussion, suggesting that these youth may be more prone to health care–seeking behavior than their peers. Additionally, attendees may not have represented attitudes toward STI testing in all regions of Baltimore and Maryland. Data should therefore be generalized with caution. The majority of our participants were female-identifying, and therefore, these data did not directly capture male perspectives on this youth-facing STI testing program. Finally, participants may have altered their responses due to social desirability bias. Given that the facilitators were in their early to late 20 seconds, participants may have responded differently in FGDs than they may have if being in a discussion of only their peers.

Conclusion

Access to STI testing for youth must be improved, and self-collect, mail-in STI testing is an acceptable method among youth. Test kits in discreet packaging should be available for shipping to a variety of locations, and communication options should be flexible based on youth’s preference. Test kits should be supplemented with resources specifically addressing information on what to do after testing, accessing treatment, and direct linkage to care with a health-care provider. The STI testing program should be transparent and demonstrate reliability. These improvements may create a desirable system for youth to pursue STI testing without the barriers that currently exist. Our prototype platform showed high acceptability among youth, as youth said that they would utilize it and share with their friends. Furthermore, while self-collect, mail-in STI testing could offer an alternative method to in-person testing for youth, future studies should explore how to most widely disseminate and promote this as an option of testing through peer promotion and social media, and how to increase motivation to use self-collected STI test kits and increase kit-return rates.

Supplementary Material

Supplementary Material

IMPLICATIONS AND CONTRIBUTION.

Innovative measures to address ever-increasing rates of sexually transmitted infections (STIs) are desperately needed. This study facilitated discussion on self-collect, mail-in STI testing for youth, a population that bears a disproportionate burden of STIs and related morbidities. The concerns and suggestions for self-collect, mail-in STI testing presented by youth participants are relevant for improving youth-friendliness of digital health technologies related to sexual health and beyond.

Acknowledgments

The study team would like to acknowledge all of the participants for their thoughtful responses and feedback, without whom this study would not have been possible. We would like to thank the members of the Violet Voices Youth Community Advisory Board, and the additional focus group facilitators: Ellie Frisch, Lyndsay Hastings, and Claire Pince. We would also like to thank our partners at Hologic, Inc for donating test kit swabs and reagents.

Funding Sources

This research was funded by a grant from the NIH Institute for Clinical and Translational Research (ICTR; UL1TR003098–03) and a small grant from the Johns Hopkins Center for AIDS Research Developmental Core (P30AI094189–01A1). J.C. was funded in part by NIH NICHD R01HD092013. Partners at Hologic, Inc provided funding for the launch of this STI testing program.

Footnotes

Conflicts of interest: The authors have no conflicts of interest to disclose.

Supplementary Data

Supplementary data related to this article can be found at https://doi.org/10.1016/j.jadohealth.2023.07.002.

References

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Supplementary Materials

Supplementary Material

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