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Forgone Health Care among U.S. Adolescents: Associations between Risk Characteristics and Confidentiality Concern

      Abstract

      Purpose

      To examine risk characteristics associated with citing confidentiality concern as a reason for forgone health care, among a sample of U.S. adolescents who reported having forgone health care they believed was necessary in the past year.

      Methods

      The study used data from Wave I home interviews of the National Longitudinal Study of Adolescent Health. The generalized estimating equations method was used to account for the clustered nature of the data.

      Results

      Prevalence of several risk characteristics was significantly higher among boys and girls who reported confidentiality concern, as compared with those who did not report this concern. Regression analyses for boys (n = 1123), which adjusted for age, race/ethnicity, parental education and insurance type showed that high depressive symptoms, suicidal ideation, and suicide attempt were each associated with increased odds of reporting confidentiality concern as a reason for forgone health care. In multivariate analyses for girls (n = 1315), having ever had sexual intercourse, birth control nonuse at last sex, prior sexually transmitted infection, past-year alcohol use, high and moderate depressive symptoms, suicidal ideation, suicide attempt, and unsatisfactory parental communication were each associated with increased odds of citing confidentiality concern as a reason for forgone care.

      Conclusion

      The population of U.S. adolescents who forgo health care due to confidentiality concern is particularly vulnerable and in need of health care services. Adolescents who report health risk behaviors, psychological distress and/or unsatisfactory communication with parents have an increased likelihood of citing confidentiality concern as a reason for forgone health care, as compared with adolescents who do not report these factors. Findings of this study suggest that if restrictions to confidentiality are increased, health care use may decrease among adolescents at high risk of adverse health outcomes.

      Keywords

      See Editorial p. 199
      Forgonehealth care is prevalent among U.S. adolescents: approximately one-quarter of middle and high school students do not recall having had a routine preventive care visit in the past 2 years [
      • Klein J.D.
      • Wilson K.M.
      • McNulty M.
      • et al.
      Access to medical care for adolescents: results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls.
      ], and 19% to 27% of adolescents in national studies report having forgone health care that they believed was necessary [
      • Klein J.D.
      • Wilson K.M.
      • McNulty M.
      • et al.
      Access to medical care for adolescents: results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls.
      ,
      • Ford C.A.
      • Bearman P.S.
      • Moody J.
      Foregone health care among adolescents.
      ]. It is well established that confidentiality concern is a salient reason for forgone care among adolescents [
      • Klein J.D.
      • Wilson K.M.
      • McNulty M.
      • et al.
      Access to medical care for adolescents: results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls.
      ,
      • Ford C.A.
      • Bearman P.S.
      • Moody J.
      Foregone health care among adolescents.
      ,
      • Cheng T.L.
      • Savageau J.A.
      • Sattler A.L.
      • et al.
      Confidentiality in health care: a survey of knowledge, perceptions, and attitudes among high school students.
      ,
      • Ford C.A.
      • Millstein S.G.
      • Halpern-Felsher B.L.
      • et al.
      Influence of physician confidentiality assurances on adolescents’ willingness to disclose information and seek future health care A randomized controlled trial.
      ], despite the fact that confidentiality in adolescent medicine is supported by all major adolescent health care organizations [
      • Elster A.
      The American Medical Association Guidelines for Adolescent Preventive Services.
      ,
      ,
      • Ford C.A.
      • English A.
      • Sigman G.
      Confidential health care for adolescents: position paper for the Society for Adolescent Medicine.
      ] and is protected by law in varying forms across all 50 states and the District of Columbia [
      • English A.
      • Kenney K.E.
      ,
      • English A.
      • Ford C.A.
      The HIPAA privacy rule and adolescents: legal questions and clinical challenges.
      ]. In one national study of middle and high school students, confidentiality concern was the leading reason among adolescents for not seeking necessary medical care, cited by 35% of respondents [
      • Klein J.D.
      • Wilson K.M.
      • McNulty M.
      • et al.
      Access to medical care for adolescents: results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls.
      ]. Another recent study found that among adolescent girls receiving confidential care at family planning clinics, 60% would stop using some or all sexual health services in the event of mandatory parental notification for prescribed contraceptives [
      • Reddy D.M.
      • Fleming R.
      • Swain C.
      Effect of mandatory parental notification on adolescent girls’ use of sexual health care services.
      ]. In addition, a national study of adolescents found that youth who reported high depression or stress scores, health risk behaviors or physical/sexual abuse histories were more likely to prefer to have their medical examinations without a parent present [
      • Kapphahn C.J.
      • Wilson K.M.
      • Klein J.D.
      Adolescent girls’ and boys’ preferences for provider gender and confidentiality in their health care.
      ], suggesting a greater value placed on confidentiality by more vulnerable youth. Prior research with adolescents also suggests that health risk behaviors and emotional distress are associated with an increased likelihood of forgoing health care for any of a variety of reasons; Ford et al [
      • Ford C.A.
      • Bearman P.S.
      • Moody J.
      Foregone health care among adolescents.
      ] found that U.S. adolescents who reported daily smoking, frequent alcohol use, sexual activity, and emotional distress were more likely than adolescents not reporting these factors to have forgone health care in the past year.
      Although confidentiality concern is understood to be an important barrier to adolescents’ utilization of health care services, prior studies have not investigated characteristics of youth who have forgone care specifically due, in whole or in part, to confidentiality concern. The present study addressed this gap by examining risk characteristics of adolescents who report confidentiality concern (i.e., not wanting parents to know) as a reason for forgone health care, using a national sample of U.S. middle and high school students.

      Methods

      Study design

      The study used Wave I home interview data from the National Longitudinal Study of Adolescent Health (Add Health). Details regarding the Add Health study design have been presented elsewhere [

      Harris KM, Florey F, Tabor J, et al. 2003 The National Longitudinal Study of Adolescent Health: research design. Available from: http://www.cpc.unc.edu/projects/addhealth/design.

      ]. In summary, a stratified random sample of 80 U.S. high schools was selected from a list of eligible high schools; high schools were stratified by factors including region, urbanicity, school size, school type, and race/ethnic composition. One feeder school for each high school was also randomly selected with probability proportional to size. Schools that incorporated grades 7 to 12 served as their own feeder school. The core study included a total of 132 schools.
      Wave I home interview data were collected from youth in grades 7 to 12 in 1995. Grand sample weights were assigned to home interview subjects to account for subgroup oversampling. Additionally, 82% of Wave I home interview subjects with sampling weights had a parental figure who took part in a parent home interview. Data regarding sexual behavior, sexually transmitted infection (STI) history, substance use, and suicidality were collected with audio computer-assisted self-interview [
      • Supple A.J.
      • Aquilino W.S.
      • Wright D.L.
      Collecting sensitive self-report data with laptop computers: impact on the response tendencies of adolescents in a home interview.
      ].
      Institutional Review Board approval for the Add Health study as a whole was granted at the University of North Carolina – Chapel Hill. Approval for the present data analysis was granted by the Committee on Use of Human Subjects at the University of California, San Francisco.

      Sample

      Of the 18,924 subjects with sampling weights in the Wave I contractual use dataset [
      • Udry J.R.
      ], the present study sample consisted of 1123 boys and 1315 girls ages 13 to 17 years who reported having forgone needed health care in the past year. The survey item regarding forgone care reads, “Has there been any time in the past year when you thought you should get medical care, but did not?” Subjects were excluded if they did not have a parental figure who participated in the Wave I parent interview, or if they lacked a Wave I sample weight, had Medicare insurance coverage, had more than three items missing on the Wave I scale of depressive symptoms, or were missing data on any of the other independent variables (Figure 1). Medicare recipients were excluded due to the possibility that predictors of health care utilization may vary for adolescents with disabilities vs. those without disabilities.

      Measures

      Confidentiality concern

      This was a dichotomous variable reflecting whether or not subjects reported confidentiality concern as a reason for having forgone health care in the past year. Presented to subjects who reported they had forgone needed care in the past year, the survey item read, “What kept you from seeing a health professional when you really needed to? If there was more than one reason, choose more than one answer.” The confidentiality response read, “Didn’t want parents to know.” Other response options included fear of what the doctor would say or do, belief that the problem would go away, lack of transportation, inability to pay, no one available to go with them, parent/guardian would not go with them, not knowing whom to see, and difficulty in making an appointment.

      Risk characteristics

      Lack of satisfaction with parent communication

      Two items, regarding the mother and father separately, read, “You are satisfied with the way your (mother/father) and you communicate with each other.” Responses were on a five-point scale, from “strongly agree” to “strongly disagree.” Subjects who reported they disagreed or strongly disagreed with both items (or one of the items if the subject lived with only one parental figure) were coded as being unsatisfied with their communication with their parent(s).

      Ever had sexual intercourse

      Sexual intercourse is defined in the survey as “when a male puts his penis into a female’s vagina.” This was a dichotomous variable.

      Nonuse of birth control at last sex

      Subjects who had not used birth control at last sex were coded as one; subjects who had used some form of birth control or who were not sexually active were coded as zero.

      Sexually transmitted infection (STI) history

      Subjects who had ever been informed by a doctor or nurse that they had gonorrheal, chlamydial or trichomonal infections were coded as one; others were coded as zero.

      Ever smoked cigarettes

      This dichotomous variable indicated whether or not the subject had ever smoked a cigarette.

      Any past-year alcohol use

      This dichotomous variable indicated any alcohol consumption by the subject in the past 12 months.

      Depressive symptoms

      Past-week depressive symptoms were assessed with a modified 19-item Center for Epidemiologic Studies Depression Scale (CES-D) [
      • Radloff L.
      The CES-D scale: a self-report depression scale for research in the general population.
      ] (Figure 2). Item scores correspond to symptom frequency and range from 0 (“never or rarely”) to 3 (“most or all of the time”); scale scores range from 0 to 56. Internal consistency reliability (Cronbach’s alpha) of the scale was .84 for boys and .89 for girls in the present sample.
      CES-D threshold scores of 22 and 24 have been found to maximize sensitivity (.84) and specificity (.75) for DSM-III-R major depressive disorder or dysthymia for adolescent boys and girls, respectively [
      • Roberts R.
      • Lewinsohn P.
      • Seeley J.
      Screening for adolescent depression: a comparison of depression scales.
      ]. Proportionally adapted to the 19-item scale, the threshold scores used in this study for “high” depressive symptoms were 21 for boys and 23 for girls [
      • Shrier L.
      • Harris S.
      • Beardslee W.
      Temporal associations between depressive symptoms and self-reported sexually transmitted disease among adolescents.
      ,
      • Goodman E.
      • Capitman J.
      Depressive symptoms and cigarette smoking in teens.
      ]. The remainder of subjects falling below the “high” threshold were divided into two equal-sized (weighted) groups for each gender, corresponding to “moderate” and “low” score categories defined by the authors for the purpose of analysis [
      • Shrier L.
      • Harris S.
      • Beardslee W.
      Temporal associations between depressive symptoms and self-reported sexually transmitted disease among adolescents.
      ]. For boys, the moderate score range was 11 to less than 21, and low scores were below 11. For girls, the moderate score range was 13 to less than 23, and low scores were below 13.

      Ever contemplated suicide in the past 12 months; ever attempted suicide in the past 12 months

      These were dichotomous variables. The survey items read, “During the past 12 months, did you ever seriously think about committing suicide?” and “During the past 12 months, how many times did you actually attempt suicide?”

      Control variables

      Age

      This was a continuous variable, ranging from 13 to 17 years.

      Race/ethnicity

      Four categories were used: non-Hispanic white, non-Hispanic black, Hispanic, and other. Subjects were assigned to the category with which they reported greatest identification.

      Parental education

      This was a dichotomous variable indicating whether the highest level of education of a parental figure was high school or less, vs. more than high school. Data are from the parent interview.

      Insurance type/status

      This was a series of dummy variables reflecting whether the adolescent currently has private insurance, health maintenance organization (HMO)/Civilian Health and Medical Program of the Uniformed Services (CHAMPUS) coverage, Medicaid, a combination of private/HMO/CHAMPUS coverage, no insurance, or another form of insurance. Data are from the parent interview.

      Statistical analyses

      Analyses were conducted separately for boys and girls, using SAS Version 8 (SAS Institute Inc., Cary, NC). Adjusted grand sample weights were used to produce estimates generalizable to the population of U.S. youth addressed in the study. Given the clustered nature of the data (youth within schools), the generalized estimating equations (GEE) method was used to provide correct and robust standard error estimation; an independent working correlation structure was specified [
      • Diggle P.J.
      • Liang K.Y.
      • Zeger S.L.
      ].
      Percentages of subjects reporting risk characteristics were first calculated, separated by whether or not they cited confidentiality concern as a reason for forgone health care. p Values indicating statistically significant differences between percentages were obtained with bivariate logistic regression instead of chi-squared tests, given the capacities of SAS Version 8 with clustered data; for these analyses, risk characteristics were entered as the dependent variables and confidentiality concern as the independent variable.
      Bivariate and multivariate logistic regression was then used to examine whether risk characteristics are associated with increased odds of reporting confidentiality concern as a reason for forgone care. Multivariate models included a risk characteristic and control variables for age, race/ethnicity, parental education, and insurance type; confidentiality concern was the dichotomous outcome variable. Reference categories for control variables were non-Hispanic white, parental education more than high school, and private health insurance. p Values were two-tailed, with significance defined as p < .05.
      For subjects missing three or fewer depressive symptom items, scores for missing items were imputed as the mean score of the other items. STI history was examined as an independent variable for girls only; due to low prevalence, there was insufficient statistical power to conduct this analysis for boys.

      Results

      Descriptive statistics for the study sample are presented in Table 1. By construction of the sample, all subjects reported having forgone needed health care in the past year; 10.5% of boys and 14.3% of girls reported that this was due, in part or in whole, to confidentiality concern (Table 1). Girls were more likely than boys to report confidentiality concern as a reason for forgone health care (p < .01).
      Table 1Descriptive statistics of study sample
      Characteristic
      Age was specified as a continuous variable. For boys the mean was 15.4 years (SD 1.3); for girls the mean was 15.2 years (SD 1.3).
      Boys (unweighted n = 1123)Girls (unweighted n = 1315)
      Reported confidentiality concern10.5%14.3%
      Race/ethnicity
       Non-Hispanic white67.364.0
       Non-Hispanic black15.718.3
       Hispanic10.812.7
       Other6.25.1
      Parental education
       High school or less37.940.9
       More than high school60.656.8
       Education missing1.52.3
      Insurance type
       Private48.746.9
       HMO/CHAMPUS22.220.4
       Medicaid8.811.0
       Private/HMO combination2.31.6
       Other insurance4.54.5
       No insurance13.515.7
      Poor parental communication8.014.0
      Ever had sexual intercourse45.143.5
      No birth control use at last sex14.018.3
      Prior STI1.62.3
      Ever smoked cigarettes67.667.6
      Any alcohol use, past year58.259.4
      Depressive symptoms, past week
       High14.023.3
       Moderate43.736.6
       Low42.340.2
      Suicidal ideation, past year15.730.0
      Suicide attempt, past year3.712.6
      HMO = health maintenance organization; CHAMPUS = Civilian Health and Medical Program of the Uniformed Services; STI = sexually transmitted infection.
      a Age was specified as a continuous variable. For boys the mean was 15.4 years (SD 1.3); for girls the mean was 15.2 years (SD 1.3).

      Boys

      Prevalence of unsatisfactory communication with parents, high past-week depressive symptoms, past-year suicidal ideation, and past-year suicide attempt was significantly higher among boys who cited vs. did not cite confidentiality concern as a reason for forgone care (Table 2). In bivariate analyses for boys, unsatisfactory communication with parents, high depressive symptoms, suicidal ideation, and suicide attempt were each significantly associated with increased odds of reporting confidentiality concern as a reason for forgone health care (data not shown). In models that adjusted for age, race/ethnicity, parental education and insurance type, significant associations with confidentiality concern persisted for high depressive symptoms, suicidal ideation, and suicide attempt (Table 3); odds ratios and confidence intervals were similar in bivariate and multivariate models.
      Table 2Percentage of subjects reporting risk characteristics, by reporting of confidentiality concern
      Did not cite confidentiality concern as reason for foregone care (%)Cited confidentiality concern as reason for foregone care (%)
      Boys
       Poor parental communication7.314.3
      p < .05.
       Ever had sexual intercourse45.244.4
       No birth control at last sex13.618.2
       Ever smoked cigarettes67.072.4
       Any alcohol use, past year58.357.5
       High depressive symptoms12.329.1
      p < .001.
       Suicidal ideation, past year14.624.9
      p < .05.
       Suicide attempt, past year2.613.4
      p < .001.
      Girls
       Poor parental communication12.821.0
      p < .01.
       Ever had sexual intercourse40.759.8
      p < .01.
       No birth control at last sex16.727.6
      p < .01.
       Prior STI1.94.9
      p < .05.
       Ever smoked cigarettes66.872.4
       Any alcohol use, past year57.173.1
      p < .01.
       High depressive symptoms20.738.7
      p < .001.
       Suicidal ideation, past year26.749.8
      p < .001.
       Suicide attempt, past year10.724.3
      p < .001.
      low asterisk p < .05.
      low asterisklow asterisk p < .01.
      low asterisklow asterisklow asterisk p < .001.
      Table 3Multivariate associations of risk characteristics with odds of citing confidentiality concern as reason for forgone care (odds ratios, 95% CI)
      Weighted estimates.
      Risk characteristicAdjusted OR (95% CI)
      Analyses adjust for age, race/ethnicity, parental education, and insurance type.
      Boys (unweighted n = 1123)
       Poor parental communication1.99 (.89–4.45)
       Ever had sexual intercourse.92 (.52–1.60)
       No birth control at last sex1.51 (.78–2.90)
       Ever smoked cigarettes1.25 (.67–2.35)
       Any alcohol use, past year.94 (.53–1.65)
       Depressive symptoms
        High3.73 (1.79–7.75)
      p < .001.
        Moderate1.33 (.69–2.55)
        Low1.00
       Suicidal ideation, past year1.90 (1.05–3.43)
      p < .05.
       Suicide attempt, past year5.87 (2.27–15.17)
      p < .001.
      Girls (unweighted n = 1315)
       Poor parental communication1.81 (1.16–2.81)
      p < .01.
       Ever had sexual intercourse2.24 (1.30–3.85)
      p < .01.
       No birth control at last sex1.89 (1.18–3.03)
      p < .01.
       Prior STI2.93 (1.17–7.32)
      p < .05.
       Ever smoked cigarettes1.35 (.86–2.11)
       Any alcohol use, past year2.03 (1.29–3.20)
      p < .01.
       Depressive symptoms
        High3.83 (2.25–6.52)
      p < .001.
        Moderate2.10 (1.28–3.45)
      p < .01.
        Low1.00
       Suicidal ideation, past year2.82 (1.83–4.35)
      p < .001.
       Suicide attempt, past year2.79 (1.53–5.07)
      p < .001.
      a Weighted estimates.
      b Analyses adjust for age, race/ethnicity, parental education, and insurance type.
      low asterisk p < .05.
      low asterisklow asterisk p < .01.
      low asterisklow asterisklow asterisk p < .001.

      Girls

      Prevalence of unsatisfactory communication with parents, having ever had sexual intercourse, birth control nonuse at last sex, prior STI, past-year alcohol use, high depressive symptoms, suicidal ideation and suicide attempt was significantly higher among girls who cited vs. did not cite confidentiality concern as a reason for forgone care (Table 2). In bivariate analyses for girls, unsatisfactory communication with parents, having ever had sexual intercourse, birth control nonuse at last sex, prior STI, past-year alcohol use, high and moderate depressive symptoms, suicidal ideation and suicide attempt were each associated with elevated odds of citing confidentiality concern as a reason for having forgone health care in the past year (data not shown). In analyses that adjusted for age, race/ethnicity, parental education and insurance type, significant associations persisted for each of these variables (Table 3); odds ratios and confidence intervals were similar in bivariate and multivariate models.

      Discussion

      This national study examined risk characteristics of adolescents for whom confidentiality concern prevented the seeking of health care. The study findings suggest that U.S. adolescents who forgo care due in whole or in part to confidentiality concern are a particularly high-risk population in need of health care services. Among boys, prevalence of mental health difficulties was significantly higher among those who cited confidentiality concern as a reason for forgone care, as compared with those who did not cite confidentiality concern. Among girls, those citing confidentiality concern had a significantly higher prevalence of risk characteristics related to mental health, sexual/reproductive health, and substance use. In multivariate analyses, adolescents who reported elevated depressive symptom levels, suicidal ideation, suicide attempt, sexual activity, birth control nonuse at last sex, STI history, alcohol use, and/or unsatisfactory parental communication were significantly more likely than adolescents who did not report these factors to cite confidentiality concern as a reason for not seeking needed care in the past year.
      Girls in this study were more likely than boys to cite confidentiality concern as a reason for forgone care. This finding is consistent with those of other studies that have found girls to be more concerned than boys about confidentiality (particularly in the domain of sexual/reproductive health) and to be more likely to forgo health care for this reason [
      • Klein J.D.
      • Wilson K.M.
      • McNulty M.
      • et al.
      Access to medical care for adolescents: results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls.
      ,
      • Cheng T.L.
      • Savageau J.A.
      • Sattler A.L.
      • et al.
      Confidentiality in health care: a survey of knowledge, perceptions, and attitudes among high school students.
      ].

      Risk characteristics and confidentiality concern

      Sexual and reproductive health

      Girls who reported having ever had sexual intercourse, birth control nonuse at last sex, and/or prior STI had an increased likelihood of citing confidentiality concern as a reason for forgone care, as compared with girls who did not report these factors. Failure to seek medical services related to these issues clearly has negative potential consequences for adolescents, their partners and their broader sexual network, as well as for pregnancy care.
      Adolescents are able to consent for care to detect, diagnose, and treat STIs in all 50 states and the District of Columbia [
      • English A.
      • Kenney K.E.
      ]. Adolescents are also explicitly allowed to consent for contraceptive care in a majority of states, although some states allow parents to be notified regarding adolescent receipt of STI care, contraceptive services, or both. Nevertheless, in sites funded in every state by Title X of the federal Public Health Service Act, adolescents may receive confidential contraception and STI care without parental notification. Therefore, in states where confidentiality regarding STI or contraceptive services is not protected across all medical settings, teens may be counseled about the availability of legally mandated confidential services in Title X sites [
      • English A.
      • Kenney K.E.
      ].

      Mental health

      Of considerable concern were our findings of elevated prevalence of high depressive symptoms, suicidal ideation, and suicide attempt among boys and girls who had forgone care due to confidentiality concern, as well as the multivariate findings that boys and girls who reported these factors had substantially increased odds of forgoing care due to confidentiality issues. Elevated depressive symptoms and suicidality are common in the general adolescent population; of approximately 15,000 high school students surveyed in the national Youth Risk Behavior Survey in 2003, 28.6% reported having felt so sad or hopeless for two weeks or more that they stopped usual activities, 16.5% had made a plan to commit suicide, and 8.5% had attempted suicide in the past year [
      • Grunbaum J.A.
      • Kann L.
      • Kinchen S.
      • et al.
      Youth Risk Behavior Surveillance—United States, 2003.
      ]. Studies have found that adolescents and young adults with depressive symptomatology [
      • Kodjo C.M.
      • Auinger P.
      Predictors for emotionally distressed adolescents to receive mental health care.
      ] and depressive disorders [
      • Wu P.
      • Hoven C.W.
      • Bird H.R.
      • et al.
      Depressive and disruptive disorders and mental health service utilization in children and adolescents.
      ,
      • Aalto-Setala T.
      • Marttunen M.
      • Tuulio-Henriksson A.
      • et al.
      Psychiatric treatment-seeking and psychosocial impairment among young adults with depression.
      ] substantially underuse mental health services.
      Adolescents’ concerns about confidentiality protections in mental health care may often be well founded. As of 2003, nearly half of U.S. states had no specific law allowing minors to seek outpatient mental health services without involving their parents. State laws that do address this issue vary widely with regard to conditions under which confidentiality is protected, and some call for informing parents when care is sought [
      • English A.
      • Kenney K.E.
      ].
      One evolving strategy for improving adolescent utilization of mental health care, recommended by the American Academy of Pediatrics, is the expansion and promotion of school-based mental health services [
      • Taras H.L.
      School-based mental health services.
      ]. A recent national survey of school-based health centers (SBHCs) found that while 60% of SBHCs offered mental health services, 25% of all visits to SBHCs were for mental health concerns [
      Center for Health and Healthcare in Schools
      ]. Another study found that youth with access to SBHCs with mental health services were 10 times more likely to seek care for mental health or substance abuse concerns than youth without this access; 98% of mental health visits were made to the SBHC even though all subjects also belonged to an HMO that provided mental health care [
      • Kaplan D.W.
      • Calonge N.
      • Guernsey B.P.
      • et al.
      Managed care and school-based health centers: use of health services.
      ]. Efforts should be made to further investigate factors that may help to augment adolescents’ comfort specifically regarding confidentiality in school-based mental health care services. In addition to this strategy, health care providers can also help to increase parents’ ability to identify signs of depression or other emotional distress in their adolescents, which in turn has been associated with increased youth mental health care utilization [
      • Logan D.E.
      • King C.A.
      Parental identification of depression and mental health service use among depressed adolescents.
      ].

      Parent-teen communication

      Adolescents in this study who reported unsatisfactory communication with their parents had an increased likelihood of citing confidentiality concern as a reason for forgone health care. This finding suggests an important double-bind faced by some adolescents, whereby teens who are potentially unable to benefit from health-related discussions with their parents are also not seeking medical services due to fear of parents’ finding out. Improved parent-teen communication regarding health-related topics may promote teen health care utilization due to a decrease in teens’ confidentiality concerns, an increase in parents’ ability to identify their teens’ need for health care [
      • Schonert-Reichl K.A.
      • Muller J.
      Correlates of help-seeking in adolescence.
      ], and/or parental facilitation of access to sensitive services; in a recent national study of adolescent girls using sexual health services, approximately 25% reported that a parent suggested they use the services [
      • Jones R.K.
      • Purcell A.
      • Singh S.
      • et al.
      Adolescents’ reports of parental knowledge of adolescents’ use of sexual health services and their reactions to mandated parental notification for prescription contraception.
      ]. The Society for Adolescent Medicine recommends that health care providers routinely encourage adolescents and parents to communicate about health-related topics, and notes that further research is needed to determine how providers can best help to promote parent-teen communication for the benefit of adolescent health [
      • Ford C.A.
      • English A.
      • Sigman G.
      Confidential health care for adolescents: position paper for the Society for Adolescent Medicine.
      ].

      Further implications for clinical practice

      Health care providers can contribute through several means to reducing confidentiality concern as a barrier to adolescent health care utilization. Among these strategies, providers should routinely educate youth and parents, beginning before the onset of adolescence, about the parameters of confidentiality protections in adolescent health services. Adolescents’ and parents’ level of knowledge about confidentiality appears to be quite limited [
      • Cheng T.L.
      • Savageau J.A.
      • Sattler A.L.
      • et al.
      Confidentiality in health care: a survey of knowledge, perceptions, and attitudes among high school students.
      ,
      • Hutchinson J.W.
      • Stafford E.M.
      Changing parental opinions about teen privacy through education.
      ,
      • Schuster M.A.
      • Bell R.M.
      • Petersen L.P.
      • et al.
      Communication between adolescents and physicians about sexual behavior and risk prevention.
      ]. Discussion of the protections and limits to confidentiality must be explained in a manner that adolescents will comprehend and trust [
      • Schuster M.A.
      • Bell R.M.
      • Petersen L.P.
      • et al.
      Communication between adolescents and physicians about sexual behavior and risk prevention.
      ,
      • Ford C.A.
      • Thomsen S.L.
      • Compton B.
      Adolescents’ interpretations of conditional confidentiality assurances.
      ].
      Because confidentiality protections vary across states, health care providers should receive training or familiarize themselves regarding the conditions under which confidentiality is protected in their state, and the conditions under which disclosure to parents is optional or required; studies indicate that there currently is room for improvement in providers’ understanding of minor confidentiality laws [
      • Akinbami L.J.
      • Gandhi H.
      • Cheng T.L.
      Availability of adolescent health services and confidentiality in primary care practices.
      ].
      Primary care visits also represent important opportunities for providers to address adolescents’ risk behaviors and mental health issues before they progress further. The availability and importance of confidential discussions between providers and adolescents during these visits must be conveyed to both parents and adolescents [
      • Hutchinson J.W.
      • Stafford E.M.
      Changing parental opinions about teen privacy through education.
      ,
      • Ginsburg K.R.
      • Menapace A.S.
      • Slap G.B.
      Factors affecting the decision to seek health care: the voice of adolescents.
      ]. In turn, parental acceptance of a confidential relationship between adolescents and health professionals may facilitate adolescent health care access and utilization as well as encourage adolescent communication with providers. Confidentiality assurances are also likely to increase adolescents’ willingness to discuss topics related to sexuality, mental health, and substance use with their physician as well as to seek health care in the future [
      • Cheng T.L.
      • Savageau J.A.
      • Sattler A.L.
      • et al.
      Confidentiality in health care: a survey of knowledge, perceptions, and attitudes among high school students.
      ,
      • Ford C.A.
      • Millstein S.G.
      • Halpern-Felsher B.L.
      • et al.
      Influence of physician confidentiality assurances on adolescents’ willingness to disclose information and seek future health care A randomized controlled trial.
      ,
      • Ginsburg K.R.
      • Menapace A.S.
      • Slap G.B.
      Factors affecting the decision to seek health care: the voice of adolescents.
      ].
      Correspondingly, providers must be proactive in taking time to speak alone with adolescents during medical office visits and in asking the parent to leave the room if needed [
      • Hutchinson J.W.
      • Stafford E.M.
      Changing parental opinions about teen privacy through education.
      ,
      • Bravender T.
      • Price C.N.
      • English A.
      Primary care providers’ willingness to see unaccompanied adolescents.
      ]. Many adolescents want to speak with their doctors about sensitive health topics [
      • Schuster M.A.
      • Bell R.M.
      • Petersen L.P.
      • et al.
      Communication between adolescents and physicians about sexual behavior and risk prevention.
      ,
      • Klein J.D.
      • Wilson K.M.
      Delivering quality care: adolescents’ discussion of health risks with their providers.
      ], but often refrain due to lack of opportunity for private discussions [
      • Ginsburg K.R.
      • Menapace A.S.
      • Slap G.B.
      Factors affecting the decision to seek health care: the voice of adolescents.
      ]. In one national study, 34% of boys and 43% of girls with high depressive symptom scores had never spoken privately with their physician, and 25% to 41% of youth reporting substance use, high stress levels, physical abuse or sexual abuse had also not had an opportunity to speak privately with their physician [
      • Kapphahn C.J.
      • Wilson K.M.
      • Klein J.D.
      Adolescent girls’ and boys’ preferences for provider gender and confidentiality in their health care.
      ]. Consistent provision of opportunities for private discussion may reduce adolescents’ concerns over confidentiality, and contribute to improved health care utilization in the event of future sensitive health concerns.
      In the context of these private discussions, primary care providers must also be consistently proactive in providing counseling, screening, and referral regarding adolescents’ health risk behaviors and mental health concerns, and in explaining the parameters of confidentiality surrounding the specific additional services that a particular adolescent may require. Studies have found that the rate of preventive health counseling among primary care providers is low [
      • Schuster M.A.
      • Bell R.M.
      • Petersen L.P.
      • et al.
      Communication between adolescents and physicians about sexual behavior and risk prevention.
      ,
      • Ziv A.
      • Boulet J.R.
      • Slap G.B.
      Utilization of physician offices by adolescents in the United States.
      ,
      • Merenstein D.
      • Green L.
      • Fryer G.E.
      • et al.
      Shortchanging adolescents: room for improvement in preventive care by physicians.
      ,
      • Millstein S.G.
      • Igra V.
      • Gans J.
      Delivery of STD/HIV preventive services to adolescents by primary care physicians.
      ]. The provision of preventive health counseling has been associated with a decrease in adolescents’ health risk behaviors [
      • Elster A.
      The American Medical Association Guidelines for Adolescent Preventive Services.
      ,
      ,
      • Ozer E.M.
      • Adams S.H.
      • Orrell-Valente J.
      • et al.
      Does screening and counseling adolescents influence their behavior?.
      ], such that concern regarding confidentiality of services for pregnancy, STI, substance abuse, suicidality or other difficulties may become a non-issue for some youth who receive this early care.

      Implications for public policy

      By demonstrating that adolescents at high risk of adverse health outcomes have an elevated likelihood of forgoing care due to confidentiality concern, the findings of this study provide evidence for supporting the maintenance and potential expansion of confidentiality protections for adolescent health care services. The study findings are of particular note given the current U.S. policy context, in which efforts are being made at federal and state levels to restrict minors’ access to confidential care. Upholding and possibly strengthening confidentiality protections may encourage adolescents with sensitive health concerns to seek care to prevent more serious sequelae, and may also afford health care providers greater opportunity to assist in facilitating parent-teen communication and parental involvement in adolescent health care.

      Limitations

      Some limitations of this study should be noted. First, the Add Health survey did not ask about specific types of health concerns for which care was forgone. Further research should examine links between adolescent risk characteristics and specific health concerns for which care is forgone due to issues of confidentiality. Second, the data are self-report; underreporting of risk characteristics or confidentiality concern would lead to underestimation of associations. Third, the depressive symptoms scale used in this study is not a diagnostic tool. Fourth, the data analysis was cross-sectional, such that inferences regarding specific causes of confidentiality concern cannot be made. Finally, the Add Health study focuses on youth attending school and results cannot be generalized beyond this population.
      In summary, decreasing confidentiality concern as a barrier to health care utilization among adolescents will likely require a multifaceted approach that includes: (a) education of health care providers, parents, and adolescents regarding availability and parameters of confidential health care services; (b) provider encouragement of parent-teen communication regarding health-related topics; (c) education of parents and adolescents regarding the importance of a confidential relationship between provider and adolescent; and (d) increase in providers’ initiative in speaking alone with adolescents and providing screening, counseling and referral regarding sensitive health topics. Expansion of school-based mental health services may help to increase utilization of mental health care by emotionally distressed youth. The findings of this study also lend support for the maintenance and potential expansion of confidentiality protections in adolescent health care.

      Acknowledgments

      This work was supported by a grant from the Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Bureau of Maternal and Child Health – Leadership and Education in Adolescent Health Training. This research used data from Add Health, a program project designed by J. Richard Udry, Ph.D., Peter S. Bearman Ph.D., and Kathleen Mullan Harris, Ph.D., and funded by Grant P01-HD31921from the National Institute of Child Health and Human Development, with cooperative funding from 17 other agencies. Special acknowledgment is due Ronald R. Rindfuss, Ph.D., and Barbara Entwisle, Ph.D. for assistance in the original design. Persons interested in obtaining data files from Add Health should contact Add Health, Carolina Population Center, 123 W. Franklin Street, Chapel Hill, NC 27516-2524 (www.cpc.unc.edu/addhealth/contract.html).

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      Linked Article

      • More Evidence Supports the Need to Protect Confidentiality in Adolescent Health Care
        Journal of Adolescent HealthVol. 40Issue 3
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          Broad agreement exists that adolescents who are depressed or sexually experienced need health care because evidence-based management can improve their health outcomes. Many also agree that adolescents can benefit from preventive health services. The challenge is to assure that adolescents have access to the health care they need and that the care they receive is of high quality. Many factors determine whether adolescents receive necessary, high-quality health care such as availability of skilled providers, accessibility of clinical sites, and a source of payment.
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