OBJECTIVES: Protecting confidentiality for hospitalized adolescents can be challenging and may interfere with optimal adolescent-friendly care. The goal of this study was to explore physician trainees’ experience with adolescent confidentiality at an academic children’s hospital.
METHODS: A total of 175 trainees were invited to complete an online survey about knowledge, attitudes, and experiences with confidential adolescent concerns in the inpatient setting. A total of 133 (76%) responded: 78% female; 65% pediatric or family medicine residents; and 35% medical students.
RESULTS: In the past year, 56 (42%) of 133 trainees cared for a hospitalized adolescent whose confidentiality had been breached. Barriers to ensuring confidentiality included: patient/family not knowledgeable about minor consent law (50%); trainees not knowledgeable about minor consent law (47%); and hospital discharge summary requiring parental signature (47%). On patient- and family-centered rounds (PFCR), respondents reported that minor adolescents (aged <18 years) compared with young adults (aged ≥18 years) were more likely to have social history discussed away from the bedside (91% vs 84%; P < .001) and less likely to have confidential time with the medical team (28% vs 47%; P < .001). Barriers to participation in PFCR included the following: patient was sleeping (61%), patient declined to participate (51%), and confidentiality concerns (32%).
CONCLUSIONS: Breaches in confidentiality for hospitalized adolescents are a common trainee experience. On PFCR, adolescents are less likely to have confidential time with the medical team than young adults. In trainees’ experience, hospital systems such as PFCR and discharge procedures pose inherent challenges to confidentiality for minor adolescent patients, as do lack of knowledge of minor consent laws by both clinicians and families.
Many adolescent and young adult patients are cared for in children’s hospitals.1,2 Hallmarks of adolescent-friendly, quality health care in inpatient settings include assuring confidentiality and private time for adolescent patients and clinicians without family members present.3 Little is known about these challenges during admission, rounding, and discharge procedures as experienced by clinicians.
Confidential information includes details about a patient’s condition or treatment that should not be disclosed without their permission. In the United States, legal protection for confidential information for young adult patients aged ≥18 years exists at the federal level through the Health Insurance Portability and Accountability Act’s Privacy Rule. Many states have laws protecting confidentiality for minor adolescents aged <18 years for certain health concerns.4,5 In New York State (NYS), the setting for the present study, minor consent laws grant adolescents the right to confidential care for reproductive health, mental health, and substance use.5 Many hospitals, including our own children’s hospital, have developed policies and procedures in accordance with state laws.
Confidentiality protection for adolescent patients is developmentally appropriate and contributes to quality health care.3,6,7 Research, including a seminal randomized controlled trial by Ford et al,8 confirms that adolescents value confidentiality assurances and demonstrate increased acceptance of reproductive health services such as contraception and sexually transmitted disease (STD) testing when confidentiality is guaranteed.9–11 In addition, professional societies, including the American Academy of Pediatrics, the Society for Adolescent Health and Medicine, and the American Academy of Family Physicians, support adolescent confidentiality protections.12–14
Patient- and family-centered rounds (PFCR), defined as “interdisciplinary work rounds at the bedside in which the patient and family share in the control of the management plan,” have been widely adopted by children’s hospitals and supported by the American Academy of Pediatrics as standard practice for children and adolescents.15–17 Several qualitative, cross-sectional and a few observational studies have reported increased staff and family satisfaction, improved resident education, and improved discharge communication with PFCR.18–21 PFCR may not, however, be an optimal setting to address confidential concerns because they are, by design, not private, and challenges with adolescent confidentiality in these settings as perceived by medical teams or by adolescent patients have not been studied.
Little is known about challenges to preserving confidentiality as experienced by trainees who provide front-line care for adolescent patients admitted to children’s hospitals with reproductive, mental health, and substance use concerns or have such concerns uncovered during hospitalization for other medical or surgical problems. The present study aimed to: (1) describe the knowledge, attitudes, and experiences of physician trainees providing confidential care to hospitalized adolescents at an academic children’s hospital; and (2) compare differences in trainees’ perceptions of confidentiality care provision during PFCR between minor adolescent patients (aged <18 years) and young adult patients (aged ≥18 years).
With permission from training program directors, an online survey was sent to pediatric residents, family medicine residents, and medical student subinterns who had rotated on inpatient services within the past academic year (2012–2013) at the Children’s Hospital at Montefiore (CHAM), a children’s hospital located in Bronx County, New York, an urban center with a population of 1.4 million. Bronx County has higher than national rates of teen pregnancy as well as STDs and HIV, and assurances of confidentiality are important to address these health needs for Bronx youth.22,23 CHAM’s policy regarding minor consent and confidentiality defines a minor and outlines those conditions protected by NYS adolescent confidentiality minor consent laws. CHAM admits an estimated 2500 adolescents and young adults annually, up to age 21 years; the top 5 admitting diagnostic groups for 13- to 21-year-olds at CHAM are: respiratory, digestive, injuries, gynecologic/genitourinary, and neurologic/psychological. Our rationale for surveying physician trainees was to capture experiences from front-line clinicians who perform the initial patient medical histories and lead PFCR. At CHAM, patients and families may decline participation in PFCR, and no formal guidance exists to exclude patients by diagnosis.
The survey was administered by using SurveyMonkey software (SurveyMonkey.com, LLC, Palo Alto, CA) in November 2013. Trainees were assured by program directors that their responses were anonymous and would not influence performance evaluations. Six weeks were allocated for survey completion, with 3 reminders to nonresponders within this time. As an incentive, respondents became eligible for a $100 Amazon.com gift card by the software’s lottery feature. The survey was developed by the investigators and pilot-tested for face validity before administration. The study was approved by the Einstein/Montefiore institutional review board.
The 32-item survey asked about demographic characteristics; knowledge of NYS minor consent law; knowledge of CHAM confidentiality policy; attitudes about inpatient versus outpatient confidentiality; experiences with confidentiality breaches and barriers; and experiences with PFCR with adolescents and young adults. Question formats included agree/disagree, yes/no/do not know, multiple answer, and a 5-point Likert-type rating scale. For analysis, choices for the Likert scale answers were dichotomized to “more often” (always or almost always) versus “less often” (sometimes, rarely, or never). The χ2 test was used for comparison of knowledge measures according to demographic characteristics and for comparison of PFCR practices for adolescents (aged <18 years) versus young adults (aged ≥18 years).
Of the 175 trainees invited, 133 (76%) responded and were included in the analysis. Most respondents (78%) were female; 54% were pediatric residents, and 12% were family medicine residents (32% postgraduate year [PGY] 1, 32% were PGY2, 28% were PGY3, and 8% were chiefs). Thirty-five percent were medical students. Of the respondents, 68% attended a NYS medical school.
Most respondents (76% [101 of 133]) correctly identified from a list the conditions that NYS law permits minors to consent for (ie, pregnancy tests/options counseling, HIV testing, STD treatment, and mental health referrals), with no differences according to respondent’s age, sex, training year, or having attended a NYS medical school. However, many respondents (49%) “did not know” about the CHAM policy on confidentiality for adolescents. When asked if there should be a greater emphasis on ensuring a minor patient’s confidentiality in outpatient settings rather than inpatient settings, more than one-third (37%) agreed, and when asked if there should be a greater emphasis on fostering parent–teen communication rather than ensuring confidentiality for hospitalized minors, nearly one-half (47%) agreed.
A large proportion (42%) of respondents endorsed the statement “in the last year I have been involved in the care of a patient whose confidentiality has been breached inadvertently in an inpatient setting at CHAM.” Reported barriers perceived by trainees that affect their ability to ensure confidentiality for adolescent and young adult patients in inpatient settings are shown in Fig 1, with patient, family, and provider knowledge about minor consent law listed most frequently. During PFCR, a significantly higher proportion of respondents (91%) reported discussing the social history away from the bedside “more often” for adolescent patients than young adult patients (84%; P < .001) (Table 1). In addition, trainees reported that adolescent patients were significantly less likely than young adult patients to have confidential time with the medical team and to have their families asked to leave the bedside during PFCR. Perceived reasons why adolescent and young adult patients may opt-out of or be skipped during PFCR are provided in Fig 2.
This study is the first, to our knowledge, that has explored physician trainees’ knowledge, attitudes, and experiences with adolescent confidentiality in inpatient settings at a children’s hospital. As Sawyer et al3 propose in their measurement framework for quality health care for hospitalized adolescents, confidentiality protections are an essential component of positive patient care experience and part of evidence-informed care that together impact the ultimate delivery of adolescent-friendly or quality health care. Adolescents with chronic health conditions such as asthma, diabetes, cancer, and many others comprise a large proportion of the inpatient population at children’s hospitals and have been shown to have similar, if not greater, risk behaviors than their healthy peers.24–26 Data from the National Longitudinal Study of Adolescent Health indicate that higher risk teens cite lack of confidentiality protection as a reason to forego health care.27
We found that trainees’ knowledge of minor consent law was suboptimal, with only about two-thirds able to correctly identify conditions covered by NYS minor consent law and only one-half with awareness of relevant hospital policy. Similarly, in a study of attending physicians and trainees in primary care settings in Michigan, two-thirds answered questions about minor consent correctly.28 Increasing education of minor consent law as well as reinforcing awareness of confidentiality concerns as trainees admit patients may improve these knowledge gaps.
Attitudes about adolescent confidentiality were mixed, revealing that almost 40% of respondents favored confidentiality protection in outpatient over inpatient settings, and almost one-half favored a focus on parent–teen communication in inpatient settings over confidentiality. In contrast, previously reported clinician attitudes about adolescent confidentiality in outpatient settings were largely positive, with 1 study reporting that 90% of clinicians approved of minor consent laws.28 Attitudes reported in our study may reflect physician trainees’ knowledge gap, a cultural de-emphasis of confidentiality in acute illness settings, or increased difficulty negotiating a hospitalized teen’s confidentiality with families. All of these factors warrant further study.
We found that experiencing an inadvertent confidentiality breach in the care of a hospitalized adolescent was not uncommon for physician trainees. This finding is concerning given the importance of confidentiality in the diagnosis and treatment of mental and reproductive health problems in adolescents. Moreover, even for adolescents with admission diagnoses that may not be protected by minor consent laws, health risk behaviors are commonly uncovered through confidential social histories, and these behaviors may need to be addressed during the hospitalization because they might contribute to or exacerbate the illness for which the adolescent was hospitalized. In addition, this encounter may be the only opportunity for the adolescent to receive related screening or care.29 A survey of hospitalized adolescents found the hospital setting to be an acceptable venue for reproductive health care, including contraception counseling and STD testing, although the investigators cautioned that confidentiality concerns may impact these decisions.30
Barriers to adolescent confidentiality perceived by physician trainees in the present study demonstrate a need to increase knowledge about minor consent law for patients, families, and clinicians. For minors, clinicians may need to partner with hospital administrators and compliance teams to amend discharge procedures that require parental signature to protect adolescent confidentiality. Notably, ethical and legal concerns were the least common barriers endorsed. In the outpatient setting, commonly endorsed barriers include insurance issues, parental attitudes about confidential care, and systems issues with the electronic medical record.28 At CHAM, interdisciplinary committees led by Adolescent Medicine physicians (including the Montefiore Adolescent Primary Care Initiative and the Adolescent Medicine Inpatient Quality Improvement committee) meet monthly to address adolescent-friendly health services and to provide real-time feedback and educational newsletters to hospital providers, as well as patient and family education materials, to increase awareness of issues such as minor consent and confidentiality. These efforts may serve as a model for other children’s hospitals to address barriers.
PFCR is the bedrock on which quality patient and family experiences are built in children’s hospitals; however, they may not be the optimal time to elicit or address confidential concerns from adolescent patients. Trainees reported differing rounding practices by age group, with young adults aged 18 to 20 years receiving confidential time more often compared with adolescents aged 13 to 17 years. An outpatient clinician survey by the American Academy of Pediatrics found that pediatricians have more comfort providing confidential care to older adolescents and may be less likely to provide confidentiality protections for younger adolescents.31 Across all ages, children and adolescents identify “being listened to” as a top health care priority, with adolescents also listing confidential time without their family present as important.32 Top barriers to adolescent patient participation in PFCR identified in our study included patient sleeping/declining and confidentiality concerns. Engaging patients in developmentally appropriate “adolescent-friendly patient-centered rounds,” where their preference about participation and exclusion of the family for part or all of the experience despite their age, is considered along with their presenting circumstances or uncovered risk behaviors. Further study is warranted about adolescent patient preferences as to when in their hospitalization they feel most comfortable discussing their confidential concerns, as this time may be during or outside of the rounding experience or with a modified PFCR team with fewer participants.
Limitations of our study begin with our single-center study design. However, our children’s hospital is similar to other urban, academic teaching hospitals. Retrospective self-reported perceptions by trainees who were largely unfamiliar with the hospital’s minor consent policy may be subject to recall or reporter bias. Lastly, attending physicians, nurses, and adolescent patients’ perspectives were not included, nor were experiences in emergency department settings before admission.
The findings of this study highlight the challenges of navigating inpatient adolescent confidentiality as experienced by front-line physician trainees at a children’s hospital. We found that experiencing a breach of adolescent confidentiality is not uncommon for our surveyed trainees. Knowledge gaps occurred among our trainees, and they perceived barriers, including patient/family knowledge about minor consent and discharge procedures, which may be points of intervention. Mixed attitudes about inpatient confidentiality warrant further exploration. The development of “adolescent-friendly patient-centered rounds” with sensitivity to patient preferences on optimal timing of confidential discussions and inclusion of family members, as well as large groups of rounding teams, should be considered to improve the quality and experience of care by hospitalized adolescents.
We thank Sari Bentsianov, MD, for her assistance with data collection and analysis. We also thank Susan M. Coupey, MD, Chief Division of Adolescent Medicine, CHAM, for her assistance with preparation and critical review of the manuscript.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Support for this project was provided by the Michael I. Cohen, MD, Fund for Adolescent Medicine, Children’s Hospital at Montefiore.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
- Children’s Hospital at Montefiore
- New York State
- patient- and family-centered rounds
- postgraduate year
- sexually transmitted disease
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- Copyright © 2016 by the American Academy of Pediatrics