Improving Participation in Chlamydia Screening Programs: Title and subTitle BreakPerspectives of High-Risk Youth FREE

CHLAMYDIA TRACHOMATIS is the most prevalent bacterial sexually transmitted disease (STD) in the United States, and adolescents and young adults have the highest rates of chlamydial infection among all age groups.¹ Early diagnosis of this STD is important, not only to minimize disease spread but also to prevent sequelae, including epididymitis, pelvic inflammatory disease, ectopic pregnancy, infertility, and chronic pelvic pain.^{2 - 3}

Because chlamydial infections are frequently asymptomatic,⁴ many infected teens have no reason to suspect a problem. Unless they seek health care for other reasons, there is no opportunity to identify and treat their asymptomatic infections. Compounding the problem, many teens at highest risk for chlamydia have no health insurance or no identified source of regular health care.^{4 - 6}

Traditional chlamydia testing procedures have served as another obstacle to early detection because collection of endocervical and urethral specimens is uncomfortable at best.^{6 - 9} Fortunately, the introduction of several nucleic acid amplification tests (NAATs) now makes it possible to detect Chlamydia noninvasively from male and female urine samples.^{10 - 16} Although not yet cleared by the Food and Drug Administration for this use, NAATs have also performed well on female introital and vaginal specimens.^{16 - 19} Noninvasive STD screening can increase testing options and venues for services.

Young women who have been queried about preferred methods of STD testing have chosen urine and/or vaginal or introital specimens over pelvic examinations.^{20 - 22} Little is known about young men's STD testing preferences; however, the urethral swab has been reported as an obstacle to testing.⁸ Other reported obstacles include teens' fear of STD test results and of others finding out that they were tested.^{6 ,22 - 23}

Knowledge about barriers to STD services encountered by high-risk youth and their suggestions for overcoming these barriers can inform chlamydia prevention and ultimately decrease chlamydia prevalence and sequelae through earlier detection and treatment. We conducted focus groups with 2 populations of high-risk, out-of-school youth in nonmedical settings to learn what can be done to improve participation of young people in chlamydia screening programs.

This qualitative descriptive study used 8 focus group interviews^{24 - 25} to learn about young people's understanding of chlamydia, attitudes toward testing, beliefs about barriers to participation in chlamydia screening, ideas about overcoming these barriers, and preferred sites for urine-based screening services. A sample size of 8 groups was predetermined based on estimates of the number required to attain saturation,²⁴ and by the conclusion of the study, most responses had been heard in previous groups.

Focus group interviews were conducted with adolescents and young adults at Job Corps and Department of Youth Services (DYS) sites in Massachusetts. The Job Corps is a voluntary program of the US Department of Labor that provides education and job training for disadvantaged young people aged 16 to 24 years. The DYS is the Massachusetts juvenile corrections agency that has custody of adolescents up to the age of 21 years who have been adjudicated delinquent by the court. These 2 populations were targeted for participation because both groups have a high prevalence of chlamydia and low utilization of health care services.^{26 - 27}

Following a short presentation given to Job Corps students by the principal investigator (D.R.B.) at an all-center weekly meeting, volunteers signed up at Health Services or were identified from the center's student list with the goal of recruiting participants of varying ages. Potential participants from the DYS sites were identified by the director and then spoke privately with the principal investigator about the study. These participants were not entirely representative because the directors chose clients who had achieved an appropriate behavioral level and were judged to function well in a group.

The strictly voluntary nature of the study was emphasized both verbally and in writing to all participants and to the DYS site directors. Written informed consent was obtained from all participants, and parental permission was obtained for participants at both sites who were younger than 18 years. Study protocol and consent procedures were approved by the University of Massachusetts Medical School Committee for the Protection of Human Subjects in Research.

Two focus groups were conducted at the Job Corps site (8 males per group) and 2 were conducted at DYS sites (8 males per group). Twelve Job Corps participants had placed their names on a volunteer list, and 4 others agreed to participate when sent a letter of invitation. The 32 males participating in the 4 groups ranged in age from 15 to 20 years (mean age, 17.8 years; SD, 1.3 years). The racial and ethnic composition of the 32 participants were 34% Hispanic (n = 11), 34% white (n = 11), 16% multiracial (n = 5), 9% African American (n = 3), and 6% Asian (n = 2).

Because of a wider age range among females in the Job Corps focus groups, 16- to 18-year-old participants were assigned to 1 of 2 younger groups (6 females per group; mean age, 17.2 years; SD, 0.8 year), and 19- to 24-year-old participants were assigned to 1 of 2 older groups (4-7 females per group; mean age, 20.7 years; SD, 1.4 years). Twelve of the participants had placed their names on a volunteer list, and 11 others agreed to participate when sent a letter of invitation. The racial and ethnic composition of the 23 participants was 39% African American (n = 9), 22% white (n = 5), 17% Hispanic (n = 4), 13% other race (n = 3), and 9% Asian (n = 2). Inclusion of a female DYS focus group was not feasible because of low female census in central Massachusetts.

A male facilitator with extensive experience conducting focus groups (J.M.O.) and a cofacilitator led the 4 male groups, and a female facilitator (D.R.B.) and a cofacilitator (S.K.D.) led the 4 female groups. Although the female facilitator had no prior formal experience conducting focus groups, she was an experienced adolescent health care provider who read extensively, consulted widely with experts, and observed several focus groups before conducting her own. Groups were convened in private rooms at the residential sites. Job Corps participants were compensated for their time with $15 and were provided pizza during the focus group meeting. The DYS protocol prohibits monetary compensation, but these participants were also served pizza. After conditions of voluntary participation and confidentiality were reviewed, each focus group session was audiotaped, and the cofacilitators took written notes during the sessions. The sessions lasted from 1 to 1½ hours. At the conclusion of each group, participants rated the quality of their experience; all ratings were at a high level.

Questions were developed based on a partnership approach to elicit information deemed important both to investigators and research participants.²⁸ The partnership approach aims to understand the "insider's perspective," which requires the researcher to acknowledge that the participant is the expert in the area of interest. Furthermore, it allows and encourages participants to generate questions and place emphasis on what they think is important. The interview guide was pilot tested with 6 individuals who commented on the appropriateness, understandability, and relevance of the questions. The guide was revised several times in response to feedback from individual interviews. Content areas included knowledge of physical effects of chlamydial infection, psychological and social effects of contracting chlamydia, positive and negative attitudes toward Chlamydia testing, barriers to testing and ideas about overcoming barriers, preferred sites to receive testing, and ways to spread the word about chlamydia testing to other youth.

Before discussion about the effects of chlamydial infection and preferred sites for testing, each participant was asked to write his or her ideas on pieces of 8½ × 11-in paper. This was to ensure that each participant contributed as many original ideas as possible and to prevent any one member's ideas from contaminating the ideas of the other participants. Subsequently, papers were pasted on the wall and the group discussed the ideas together.

Audiotapes were transcribed verbatim by an outside agency. Textual data were categorized using content analysis techniques.²⁹ Verbatim responses were coded by 2 investigators (D.R.B. and M.H.K.) into categories based on the original research questions and spontaneously offered comments. The percentage of intercoder agreement was calculated, and the coding scheme was revised after each round until satisfactory agreement (83%) was reached. Major themes were identified and exemplary quotes were selected.

At least 1 member of each group expressed uncertainty or lack of knowledge about the effects of chlamydial infection. Although some participants accurately identified symptoms of chlamydial infection, many others described inaccurate symptoms. At least 1 participant in 3 of the 4 male groups and in 1 of the 4 female groups thought it was possible to die of a chlamydial infection.

Members of every group described strong negative feelings that would accompany the potential diagnosis of a chlamydial infection, particularly depression and/or lowering of self-esteem, such as "You feel like a low-life person" (male) and "A person might feel dirty" (female). Other feelings included guilt, shame, embarrassment, and fear.

Many young people believed that a diagnosis would damage a relationship: "Your partner might not want to have sex with you" (male). In many cases, participants would not want to tell their partner because of fear of the partner's reaction: "Because if she doesn't have it, she knows you got it from somebody else. . . ." (male). Another theme was fear of rejection or being thought of badly by friends: "What are people going to think of me, and I'm a whore and this and that" (female).

Prominent reasons for getting tested included making sure that one was not infected; finding out if one were infected so he or she could get treatment; protecting one's body, partner, or infant; or responding to symptoms, a condom break, or suspicions about one's partner.

Not surprisingly, all participants had strong negative emotional responses to urethral swabs and pelvic examinations, including discomfort and embarrassment. They were relieved that a test was available that only required them to "pee in a cup." Even with the availability of a urine test, which was considered convenient, not embarrassing, and not uncomfortable, participants described many remaining obstacles to Chlamydia testing (Table 1). These included lack of privacy, fear of finding out that one has an STD or acquired immunodeficiency syndrome (AIDS), fear of surreptitious drug testing, denial, and embarrassment. Fear of AIDS was a common theme in the male groups.

Suggested motivators for testing (Table 2) included stressing the positive aspects of testing and treatment as a good and responsible thing to do, providing information about chlamydia and its treatment, providing support or bringing a friend, assuring privacy, decreasing turnaround time for results, reducing or eliminating cost, and including chlamydia testing as part of health care visits for other reasons. Several male participants thought that providing money or other incentives, such as pizza, movie coupons, or mall certificates, would motivate people to get tested.

In response to the statement, "Most people who have chlamydia don't feel sick. They feel totally fine," some participants pointed out that people could interpret this to mean that Chlamydia does not cause any problems: "So, if you tell somebody you don't get sick off it, they're going to think well, it's not that bad" (female), "They wait until like they have a sign. Like most people wait to go to the doctor's till they get sick. And then they find out" (female), and "Because if people don't feel sick, they're not going to be scared" (male). Others noted that if people learned they could have an infection without warning symptoms, they would want to get tested right away: "Because if somebody knows that they might not see any effects or something, they might be like wow, maybe I should go get tested, because I don't know if I have it or not" (male). Participants suggested that the message should emphasize both the dangers of an untreated infection and the strong possibility that one might have this damaging infection without any warning signs: "That's why you would put that in a message like if you were making a commercial. You'd put that you might not have no symptoms, but this is what can happen to you if you don't get tested" (female).

Ideas about sites to offer urine-based Chlamydia testing ranged from traditional to novel (Table 3). In general, males were more enthusiastic than females about receiving testing at their primary care physician's office. Suggested clinic settings included free clinics, health clinics, STD clinics, and Planned Parenthood clinics. Although clinic settings offer free testing, experienced staff, and free condoms, many participants were not comfortable attending clinics because they were located in a part of town where people could spot them. Participants also had mixed feelings about testing at school. Although some thought that this would be a convenient location and people would not know why they were there, others feared that the clinic would not be able to maintain students' confidentiality. Other sites mentioned as offering privacy because of their inconspicuous nature included a Laundromat, a library, a church, and a movie theater. Ideas for urine pickup included leaving it in a drop box and putting the specimen in a movie theater popcorn bag.

The youth favored obtaining urine specimens in their own homes, primarily because of the degree of privacy this method would afford. Urine could be delivered to the physician, picked up by a health professional, or mailed to the laboratory or physician's office. There was overwhelming enthusiasm for using a home test kit, much like a home pregnancy test, that could be obtained through the mail or at a pharmacy.

Participants' many creative ideas about ways to spread the word about noninvasive Chlamydia testing (Table 4) included television commercials, magazines read by young people, popular television programs, and public service announcements during soap operas and sports events. School-related strategies included discussions during sex education class, posters in the hallway, and guest speakers. Community events where Chlamydia testing could be promoted included a National Health Day, a health or chlamydia festival, a chlamydia test-a-thon, a block party downtown, a show at the mall, and a health fair. Community centers, including YMCAs, boys' clubs, girls' clubs, and youth centers, were also mentioned as places where young people could receive information in flyers, pamphlets, or presentations. Participants recommended recruiting peer counselors as credible spokespeople. Some offered creative messages or attention-getting phrases.

Focus group participants' enthusiasm for using a urine test to detect Chlamydia was tempered by many remaining concerns. As in previous studies,^{6 ,9 ,22 - 23} these included privacy issues, negative feelings associated with an STD diagnosis, fear, and denial. The desire for more privacy in testing owing to the stigma associated with STDs was a recurring theme, as was lack of knowledge and misconceptions about chlamydia, which contribute to the fear of being diagnosed with an STD and the confusion between chlamydia and AIDS.

Participants supported providing more information about all aspects of chlamydia (effects, testing, and treatment) to dispel myths, correct misconceptions, and alleviate fear of being tested. To combat the stigma and bad feelings from an STD diagnosis, messages should focus on the positive side of getting tested (being responsible and receiving treatment) to help young people to feel good about themselves and their decisions.

The youth suggested that messages to young people need to address the asymptomatic nature of chlamydia to convince people who feel well that they might be infected and that an asymptomatic infection can still cause damage to their bodies. Although fear arousal techniques have previously been used to promote healthier behavior, results of this study suggest that fear arousal may serve as a deterrent for Chlamydia testing. Other studies^{30 - 32} have shown that fear of cancer coupled with lack of knowledge about effective therapies may cause patients to avoid screening visits or seeking care for symptoms. Studies^{33 - 35} in which fear arousal was associated with behavior change have shown that the message must contain a convincing component about the effectiveness of prevention or treatment.

Like other adolescents,³⁶ the participants had mixed feelings about obtaining STD screening from a primary care physician, school, or other clinic because of concern that their privacy would not be protected. As recommended in a recent Institute of Medicine report,⁴ screening should be provided at a variety of venues to reach as many youth as possible.

Participants were enthusiastic about a home testing kit, which could preserve privacy and maintain a sense of control over one's test results. Although such a test is not yet available, the possibility exists for females to obtain self-administered vaginal or introital swabs and for both males and females to obtain urine in their own homes. Several recent studies^{37 - 43} have demonstrated the feasibility of this approach, but most have involved participants who were at least 18 years of age. Whether adolescents would be willing to mail or deliver vaginal or urine samples collected at home has yet to be established. If a home testing kit is introduced, it will be important to work out a strategy for follow-up care to patients testing positive who do not have an identified source of health care.

Use of a qualitative method has inherent limitations because the sample size is relatively small. However, focus groups to elicit responses to open-ended questions enable young people to build on each other's responses, providing rich information otherwise unattainable with traditional survey techniques. We sampled racially and ethnically diverse out-of-school young people in nonmedical settings. Although selection of these young people limits generalizability to other subpopulations, these focus groups had the advantage of giving voice to young people who may not be included in school-based or medical setting–based surveys.

This study was exploratory and therefore hypothesis generating rather than outcomes based. Future hypothesis-generating studies with other subpopulations of young people are needed. Outcomes-based research can then apply these ideas and evaluate them systematically. For example, development of a home Chlamydia test kit (much like a home pregnancy test) has the potential to substantially increase screening among high-risk youth. In the mean time, we can address these young people's concerns about testing, dispel misconceptions, and provide more information about chlamydia infection, noninvasive testing, and treatment. Above all, to attract high-risk young people, STD services need to be provided in a manner that preserves privacy and protects confidentiality.

Corresponding author and reprints: Diane R. Blake, MD, Department of Pediatrics, University of Massachusetts Medical School, 55 Lake Ave N, Worcester, MA 01655.

Accepted for publication January 15, 2003.

This study was supported by grant 5 K23 AI01750-01 from the National Institute of Allergy and Infectious Diseases, Bethesda, Md.

We are grateful to Gary Shostak, MPH, for his assistance in coordination of the focus groups at the DYS. We are also grateful to the staff who assisted us at each site and especially to all of the young people who participated in the focus groups.

The contents of this study are solely the responsibility of the authors and do not necessarily represent the official views of the National Institute of Allergy and Infectious Diseases.

Many youth at highest risk for chlamydial infection do not receive timely screening for this infection. Newer, noninvasive testing methods should improve screening efforts; however, many obstacles to screening still remain. The young people who participated in this study have informed us of the following: misconceptions about chlamydia need to be dispelled through education with a positive message promoting responsibility, multiple screening techniques and venues should be used, and privacy protection is a pivotal issue.