Copyright 2000 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.2000
To examine the relationship between adolescents' perception of the confidentiality of care provided by their regular health care provider and their reported use of this provider for private health information and for pelvic examinations.
Anonymous, self-report survey.
Thirty-two randomly selected public high schools in Massachusetts.
Of 2224 students in systematically selected 9th and 12th grade classrooms, 1715 (50% male) had a regular provider and a checkup within the last year.
Of teens surveyed, 76% wanted the ability to obtain confidential health care, but only 45% perceived their regular provider to provide this, and only 28% had discussed it explicitly. Logistic regression analyses revealed strong relationships between confidentiality and all outcomes studied. Among adolescents, the likelihood of having discussed sexually transmitted diseases, pregnancy prevention, and/or facts about sex with their provider was greater among teens who received a confidentiality assurance than that for teens who did not (odds ratio [OR] = 2.7; 95% confidence interval [CI], 2.2-3.4). A similar relationship for teens' likelihood of having discussed substance use with the provider was found (OR = 1.8; 95% CI, 1.4-2.3). Among sexually active females, the likelihood of a recent pelvic examination for those who received a confidentiality assurance was greater than for those who did not (OR = 3.3; 95% CI, 2.1-5.5).
This study furthers evidence of an important link between teens' perception of confidentiality and use of health care services and information. Because teens' health risks lie largely in potential risks from health-related behaviors, confidentiality in health care may be a critical factor in disclosure and discussion of risky behaviors, and ultimately in appropriate use of health care services. Efforts should be made to increase teens' access to confidential health care sources.
GIVEN THE human and financial cost of adolescent pregnancy, substance abuse, sexually transmitted diseases, depression, and suicide, facilitating teens' use of needed health care is an important priority for our health care system. Concern that adolescents may avoid seeking health care for these issues due to lack of confidentiality has led the Society for Adolescent Medicine,1 the American Medical Association,2 the American Association of Family Physicians,3 and the American Academy of Pediatrics4 to urge increased availability of confidential health care services for adolescents.
Three recent studies have documented important relationships between confidentiality and the decision to seek health care for teens.5- 7 Cheng et al5 found that more than 25% of teens stated that they would forego health care for private health concerns if parents might find out about it. Ginsberg et al6 found that teens rank confidentiality high among factors influencing their decision to seek health care. An experimental study by Ford et al7 showed that teens who received a confidentiality assurance from a health care provider during a mock health care visit were more likely to report that they would honestly disclose their behaviors to this provider and to make a return visit for private health concerns. This same study found that 17% of teens had foregone health care since becoming a teenager because of concerns that parents would find out, and 7% reported that health care providers had talked to their parents without their permission. All 3 studies provide important evidence that lack of confidentiality may cause teens to underuse health care services. However, these studies primarily examined how teens' perceptions of confidentiality affected their use of health care services in hypothetical situations, and there is an absence of published information linking teens' perceptions of confidentiality in health care to reports of their actual use of health care services. The purpose of this study was to examine whether adolescents' perception of the confidentiality of care provided by their regular health care provider was associated with teens' self-reported use of this provider for (1) pelvic examinations for sexually active females and (2) private health information and education for both male and female teens on topics including alcohol, tobacco, illegal drug use, and sexuality-related topics.
Data for the study were collected from January 15, 1992, through May 29, 1992, through a written, self-administered survey among 9th and 12th grade adolescents attending Massachusetts public high schools. The survey instrument was developed using questions from other surveys where available.5,8- 14 Questions were developed for this survey about teens' desired and perceived access in the past year to confidential health care and discussion of various health-related topics with a health care provider. The survey instrument was reviewed by academic experts, adolescent health practitioners, and survey researchers. Survey questions were pilot tested in 4 teen focus groups, and the survey instrument was pretested in two 9th grade public school classrooms for clarity, length, and completeness of close-ended question responses. The survey instrument (available from one of us [S.J.E.]) was geared at the 6th grade reading level.15
Fifty public high schools were randomly selected from all high schools in the state (excluding schools with fewer than 100 students) using the computer program used by the Massachusetts Department of Education for the Youth Risk Behavior Surveillance done for Centers for Disease Control and Prevention surveillance.16 Thirty-two of the 50 schools contacted agreed to participate in the survey (64% participation rate). Compared with Massachusetts public high schools statewide, the 32 participating schools had a similar percentage of minority students (20% vs 19%), a similar dropout rate (4%), and a lower percentage of students who applied for assistance (eg, free lunches) through the school system (13% vs 19%).17- 19 Nonparticipating schools cited participation in too many surveys (n = 11), fear of negative community reaction (n = 4), and staff limitations (n = 3) as reasons not to participate.
A systematic selection technique was used to select two 9th and two 12th grade classes from among mandatory classes (eg, English, health, or gym) at each school so that each student had a chance of being surveyed and no student would be surveyed twice. A passive parental consent policy was used. Translation and/or assistance was provided for Spanish speaking, deaf, and blind students. The survey was administered by one of us (J.S.T.) or 2 trained graduate students so that classroom teachers would not violate students' confidentiality. The survey took about 30 minutes to complete.
Of the 2787 students enrolled in the classes selected to be surveyed, 17% were not in attendance and 3% refused (or their parents refused) participation; 5 surveys (0.2%) were discarded as a result of validity checks. A total of 2224 students completed usable surveys: 1715 had a regular health care provider and checkup in the last year. At least 95% of the participating students responded to each survey question. Demographic characteristics are shown in Table 1.
The 60 survey questions included: (1) sociodemographics, including ethnicity, sex, age, school performance/grades, family structure, and parents' education level; (2) self-reported health status; (3) health care experiences, including having a regular source of health care (person or clinic), insurance status, number of health checkups in the last 12 months (checkup or physical examination when not sick or hurt), pelvic examination history, having ever wanted to get health care but not gone for fear parents would find out, and having discussed private health-related issues with a health care provider in the last year (facts about sex, sexually transmitted diseases, pregnancy prevention, advice on "how far to go with sex," drug use, alcohol use, and tobacco use); (4) risk behaviors, including sexual intercourse and use of illegal drugs, alcohol, and tobacco in the past 30 days; and (5) confidentiality issues, including desire to be able to obtain health care without parental knowledge, perception that health care provider provides confidential care, and having discussed confidentiality with the health care provider (Table 2).
Data were analyzed to examine the relationship between teens' perception of the confidentiality of their health care and the following 3 outcomes: (1) the probability that a sexually active female teen had had a pelvic examination in the last 2 years (an indicator of reproductive health care); (2) the probability that the teen had discussed any of 3 sex-related topics (sexually transmitted diseases, pregnancy prevention, facts about sex) with their health care provider in the last year; and (3) the probability that the teen had discussed any of 3 substance abuse–related topics (tobacco use, alcohol use, illegal drug use) with their health care provider in the last year. To ensure that teens had had opportunities to receive health services and discuss health issues with their regular provider, teens were only included in this analysis if they reported (1) having a regular health care provider and (2) having had a checkup in the last year. Population characteristics were similar for the restricted and unrestricted samples, and results of odds ratios (ORs) and logistic regressions were also similar.
Logistic regression models were created for each of the 3 outcomes, controlling for the variable of interest, ie, perceived confidentiality of the provider, and all variables with a conceptually significant as well as a statistically significant unadjusted association with the outcome. The variables included in the model varied by outcome and are noted in the footnotes of Table 3. Demographic variables without a statistically significant relationship to the 3 dependent variables were not forced into the models because we did not have strong a priori theoretical reasons for doing so.
Independent variables available for all outcomes included teens' self-reported sociodemographic and family characteristics (age, sex, ethnicity, 1- or 2-parent family, mother's education, father's education), and health-related factors (sick days from school, health status). Sex and history of sexual activity were not considered as possible independent variables for the pelvic examination outcome because only sexually active girls were included. However, a variable that measured girls' sexual experience (having had sexual intercourse "many" vs "once or a few" times) and the history of pregnancy variable were included. History of sexual activity and a history of having been pregnant (girls) or caused a pregnancy (boys) were possible independent variables for the outcome of having discussed sex-related issues with the provider. History of substance use in the past 30 days was considered as an independent variable for the discussion of substance use outcome.
For purposes of statistical analysis, responses were made categorical as follows: ethnicity (white, black, other), self-reported health status (excellent to good, fair to bad), number of sick days from school in the last 30 days (0-2, ≥3), insurance status (private insurance, Medicaid, no insurance), mother's education level (less than high school graduate, high school graduate, some college, college graduate and beyond), number of health checkups in the last year (none, 1, >1), and whether the teen perceived their health care provider to maintain confidential care (yes, other). Students reported their grades using the following 5 responses: mostly As and Bs, mostly Bs and Cs, mostly Cs and Ds, mostly Ds and Fs, or mostly Fs. Their responses were divided into 2 categories: mostly As to Cs (good grades) and mostly Cs to Fs (poor grades). Age was made categorical to distinguish middle (14-16 years) and older (17-19 years) adolescents because only 9th and 12th grade students were sampled.
For each of the 3 outcomes, we calculated ORs and 95% confidence intervals (CIs) for the independent variable of interest (perceived confidentiality of the provider). The OR approximates how much more likely (or unlikely) it is for the outcome to be present among those who perceived their provider to maintain confidentiality than among those who did not20 (Table 3).
A substantial degree of multicollinearity was expected and discovered between the confidentiality variable and the other independent variables. To examine this, we conducted further analyses for each of the 3 outcome variables. We first examined changes in the coefficient of the confidentiality variable as a result of including and excluding the other independent variables in the model. Then we ran the model on subsets of the data created by stratifying by these variables, again observing changes in the coefficient and significance level of the confidentiality variable. In most cases, only slight changes were noted. Any occurrences of multicollinearity are noted in the "Results" section.
Finally, as expected, analysis identified strong correlations among sociodemographic and other independent variables. However, because our focus was not on examining their specific effects on the outcomes, these relationships were not further examined in this study.
Demographic and other characteristics of the teens surveyed who had a regular provider and a checkup in the last year are described in Table 1. Older age was associated with having perceived confidentiality (Mann-Whitney test [P<.001]). Teens' perceptions and experiences of confidentiality in health care are presented in Table 2. Characteristics of sexually active female teens are provided in Table 4. Data in these 3 tables are given for the 2 subgroups of teens who reported having or not having a regular health care provider who maintained confidentiality.
Although 76% of the teens surveyed reported wanting to be able to obtain health care without parental knowledge, only 45% perceived their regular provider to offer confidential health care services. (Five percent reported that their regular provider would not provide confidentiality, and 50% were not sure.) Of the 45% who believed their provider would maintain confidentiality, only 45% had explicitly discussed confidentiality with their provider, and, among all teens, only 28% had explicitly discussed confidentiality with their provider. Eight percent of teens reported having wanted, but not gone to get, health care in the last 12 months for fear their parents would find out. Among teens with a perceived confidential provider, 7% reported doing so. Teens who perceived their provider to be confidential were more than twice as likely to report having obtained health care without parental knowledge in the last year (13% vs 6%, P<.01).
Among 374 sexually active female teens who reported having had a regular source of health care and a checkup in the last year, the perception of confidentiality was a significant predictor of having had a pelvic examination in the last 2 years after taking other important variables into account (OR = 3.3; 95% CI, 2.1-5.5) (Table 3). When we stratified the population by the 4 variables found to be correlated with the confidentiality variable (history of pregnancy, level of sexual experience, insurance status, age), the significance of the confidentiality variable varied only by insurance status and level of sexual experience. Among sexually active females covered by Medicaid, the perceived confidentiality of the provider was not a significant predictor of having had a pelvic examination in the last 2 years (OR = 3.0; 95% CI, 0.6-14.9). However, for those with private health insurance, the significance of the confidentiality variable was similar to that in the main model (OR = 3.5; 95% CI, 2.0-6.2). Among girls who reported only having had sexual intercourse once or a few times, the perceived confidentiality of the provider was no longer a significant predictor of having had a pelvic examination in the last 2 years (OR = 2.1; 95% CI, 1.0-4.5). Among more sexually experienced girls, the confidentiality variable remained significant (OR = 4.8; 95% CI, 2.5-9.4). Less sexually experienced girls were much less likely to report having had a pelvic examination (40%) than the more sexually experienced girls (67%).
For teens, the perception of confidentiality remained a strong and independent predictor for male and female teens of having discussed sex-related topics with the provider after taking into account a range of other important predictors (OR = 2.7; 95% CI, 2.2-3.4). When we stratified the population by the variables found to be correlated with the confidentiality variable (history of sexual activity, insurance status, age, sex, history of having been pregnant or caused a pregnancy), the significance of the confidentiality variable varied only by history of having been pregnant or caused a pregnancy. Among the subset of teens with a history of having been pregnant or caused a pregnancy, the perceived confidentiality of the provider was not a significant predictor of having discussed sex-related topics with the provider (OR = 1.1; 95% CI, 0.2-5.9). However, for those females with no history of pregnancy, the confidentiality variable remained significant (OR = 2.8; 95% CI, 2.2-3.4).
Finally, logistic regression analysis showed that among teens with a regular provider and a checkup in the last year, the confidentiality variable was a significant predictor of having discussed alcohol, tobacco, and other drug use with the provider in the last 12 months after taking other important predictors into account (OR = 1.8; 95% CI, 1.4-2.3). History of substance use in the last 30 days was the only variable found to be collinear with the confidentiality variable, and when we stratified by history of substance use, the confidentiality variable remained a significant predictor of the outcome in both subgroups.
This study of teens in Massachusetts reinforces and strengthens the existing notion that confidentiality is of utmost importance in encouraging adolescents to use health care when appropriate and in ensuring teens' access to key health-related information and services. In our school-based sample, less than half reported knowing that they could depend on confidentiality from their regular health care provider, although most said they wanted access to confidential care. More than three quarters would like to be able to use health care without their parents' knowing. When asked about their actual use of health services, 8% of the teens surveyed reported that they had wanted to go for health care in the last year but avoided doing so because they were afraid their parents might find out. Almost 1 in 10 students reported having gone for health care in the last year without their parents' knowledge.
Our results are somewhat different from the findings of Cheng and colleagues5 that 1 in 4 teens would avoid seeking health services for private matters if they feared that their parents would find out. The findings of Cheng et al represent what teens say they would do in hypothetical situations, rather than self-reported health care use in the past year. Ford and coworkers7 found that 17% of teens had foregone health care since the beginning of adolescence. Our survey, designed to elicit self-reports of teens' actual health care seeking behavior in the recent past, found that 8% of teens with access to health care had wanted health care in the past year but not received it and that more than three quarters would like to have access to confidential health care.
The measure of perceived confidentiality used in this study was not whether teens had discussed confidentiality with their provider, but whether they believed that he or she provided confidential care. Our findings suggest that explicit assurances of confidentiality may not be either necessary or sufficient conditions to give teens security that their regular health care provider will maintain confidentiality. Our study found that less than half the teens who trusted their provider to maintain their confidence reported having explicitly discussed the issue of confidentiality. Some providers may simply have a style that inspires teen patients to trust them. Also, teens may be familiar with rumored (or advertised) confidentiality of particular health care clinics or providers without actually discussing the topic with a provider.
Conversely, recent research supports the theory that providers can increase trust simply by giving teens an assurance of confidentiality7; however, we found that even among teens who thought their provider would maintain their confidentiality, 7% had foregone seeking needed health care for fear their parents would find out. This finding suggests that confidentiality assurances alone do not guarantee that a teen will access services. There may be some teens who only trust their provider after he or she has built a history of maintaining the teen's confidentiality or a reputation among other teens for doing so. Also, factors unrelated to the health care provider may make it difficult for teens to get health care without parents' or peers' knowledge (eg, health care provider's office located where teen fears neighbors and peers may see him or her). This study does not allow us to identify which factors are most important to teens, and research should investigate this topic further.
Among sexually active female teens with regular and recent health care, those who perceived their provider to maintain confidentiality were far more likely to have had a pelvic examination in the last 2 years, taking other factors into account. Gynecologic examinations and Papanicolaou smears are recommended by major professional organizations for sexually active teenagers,21- 23 and providers rely on teens' honestly disclosing their sexual behaviors to identify which patients need these services. (Female teens may disclose their sexual history to their provider in response to his or her questioning, or to request information or hormonal birth control methods.) Therefore, the association between perceived confidentiality and pelvic examinations may actually measure the strength of the association between teens' trust in their provider and their willingness to disclose their sexual behavior to him or her. Because our data are cross-sectional, we cannot deduce from our findings that perceived confidentiality led girls to get pelvic examinations. However, it may be the case that girls who knew their provider would keep their health care confidential were more likely to disclose their sexual activity to this provider, and to request or be offered appropriate reproductive health care. It is also possible that girls sought a confidentiality assurance before disclosing a history of sexual activity (possibly to request birth control) to their health care provider. Both of these possibilities would lead to the conclusion that perceived confidentiality was an important factor in teens' decisions to seek reproductive health care. Conversely, it is possible that girls who had had pelvic examinations in the past learned through experience that their health care provider did not divulge this confidential information. It is also possible that providers were more likely to discuss confidentiality issues with their teen patients who had gynecologic services. Notably, because most of the girls who perceived their provider to maintain confidentiality had not explicitly discussed the subject with their provider, the latter explanation is unlikely.
The fact that confidentiality was not linked to pelvic examination outcomes for sexually active girls covered by Medicaid (with regular providers and checkups) may reflect differences in health care providers' assumptions about the sexual behavior of Medicaid and privately insured female teens (if health care providers assume Medicaid recipients are sexually active and automatically provide them with reproductive health care). Alternately, Medicaid recipients may tend to receive care in health centers where gynecologic care is routinely provided. Teens covered by Medicaid may be more able than privately insured teens to arrange their health care independently (eg, teen Medicaid recipients in Massachusetts do not have billing statements sent to their homes). Although female teens covered by Medicaid were more likely to have been pregnant than girls with private insurance, this does not explain the difference in findings because we controlled for history of pregnancy in the analysis.
We also found that, among those sexually active female teens who reported only having had sexual intercourse once or a few times, perceived confidentiality of the provider was not a statistically important predictor of pelvic examinations, considering other factors. Interestingly, the gynecologic examination rate for these sexually active, but less experienced, teens is closer to that of teens who are not sexually active than sexually experienced teens. A possible explanation is that teens who have just become sexually active have not yet had the opportunity or desire to disclose sexual activity (by seeking birth control or otherwise) to their health care provider. For these girls, like teens who are not sexually active, the factors driving the likelihood of having a pelvic examination may be largely unrelated to confidentiality concerns (eg, history of reproductive health risks requiring reproductive health care, parents' or health care provider's decision to begin reproductive health care for teen).
Our study also found that teens who believed that their health care provider would maintain their confidentiality were more likely than other teens to have discussed private health topics (such as sexually transmitted diseases, pregnancy prevention, alcohol and other drug use) with this provider in the last year, controlling for other factors. Interestingly, the relationship between confidentiality and having discussed sex or drug use with the provider remained strong when we stratified by history of sexual activity and history of substance use, respectively. The relationship may be explained if teens' willingness to initiate discussions of these private health topics with their provider is dependent on their trust in their provider's confidentiality.
The overall discussion rates for the study population for all topics were surprisingly low. Despite the fact that more than 80% of adolescents surveyed in this study had had at least 1 health checkup in the last 12 months, many of them had not discussed any of the health topics with a provider. Although some teens may have refused, forgotten, or underreported such discussions, the rates are still low. Efforts are needed to encourage providers to initiate discussion of these important health topics with all their adolescent patients.
Similarly, only 28% of teens reported having discussed confidentiality with their provider. A recent survey of 786 board certified health care providers found that 53% reported regularly discussing confidentiality with their adolescent patients.24 Given that 76% of all teens reported the desire for confidentiality in their health care, both the teen- and health care provider–reported figures are too low. Health care providers treating adolescent patients must be encouraged to discuss their confidentiality policies with their teen patients.
In reviewing the results of all 3 logistic regression analyses, it is clear that the relationship between perceived confidentiality and the probabilities of having discussed sex- or substance-related topics with the provider, and having had a pelvic examination (for sexually active female teens), was strong. Because this study examined cross-sectional data, we cannot conclude that confidentiality encourages teens to disclose information to their provider, or that lack of confidentiality prevents them from doing so. However, our findings add to a growing body of evidence defining the important relationship between confidentiality and adolescents' willingness to honestly disclose their health behaviors to their provider in order to receive vital health services and information.
Before generalizing these results, the following limitations of the data analysis should be considered. The use of schools as a survey site may underrepresent high-risk groups of adolescents who are not enrolled or are chronically absent. Because surveys reflect only students in public high schools in Massachusetts, these results may not be generalizable to all teens. The 64% school participation rate combined with the 80% student participation rate means that this survey represents approximately 51% of the originally intended sample. However, only 3% of students actually refused participation and less than 1% had to be excluded. Since medical chart reviews were not performed, students' self-reported pelvic examination history, health checkup history, or history of discussing confidentiality and private health topics with their provider may be inaccurate.
A number of areas deserve further study but were not included in our survey. It would be interesting to examine the reasons that teens perceived their care to be confidential or not. Future studies should examine the reasons for teens' health visits, whether the teen was seen alone or with a family member, the type of provider or health care site at each visit, the teen's access to insurance coverage without parental notification, and the provider's knowledge of the teen's pregnancy and other health history. We could not examine the relationship between the availability of a confidential school health center and teens' use of their health care provider for pelvic examinations and health information because of the small number of schools in this study with confidential health centers available to all students.
This study strengthens the mounting body of evidence linking teens' perception of confidentiality in health care and their self-reported use of important health care services. Our findings also provide further evidence of the association between confidentiality and teens' willingness to disclose and discuss private health issues with the provider. Many of the health risks that teens face result from health-related behaviors such as sex and drug and alcohol use. Therefore, disclosure and discussion of these risky behaviors with regular providers are arguably among the most important elements of preventive health care for adolescents. The results of this study do not allow us to determine the factors that inspire teens to trust in the confidentiality of their provider, and further research would shed light on this important question. However, our findings provide further evidence of the need for teens to have access to confidential health care. It is of crucial importance for providers who work with adolescents to explicitly discuss confidentiality with their teen patients.
Accepted for publication April 10, 2000.
This study was supported in part by grant B-5924 from the Carnegie Corporation of New York, and the Jessie B. Cox Charitable Corporation, New York, NY, and grant MCJ-MA259195 from the Maternal and Child Health Bureau, Boston, Mass.
We thank Elizabeth Goodman, MD, Children's Hospital, Boston, for her critical reading of the manuscript.
Corresponding author: Jeannie S. Thrall, MPP, 1700 Weldon Blvd, Ann Arbor, MI 48103. Corresponding author: Jean Emans, MD, Division of Adolescent/Young Adult Medicine, Children's Hospital, 300 Longwood Avenue, Boston, MA 02115.
Thrall JS, McCloskey L, Ettner SL, Rothman E, Tighe JE, Emans SJ. Confidentiality and Adolescents' Use of Providers for Health Information and for Pelvic Examinations. Arch Pediatr Adolesc Med. 2000;154(9):885-892. doi:10.1001/archpedi.154.9.885