Psychology students need the ability to create informed consent and debriefing forms that adequately state the purpose of studies to the participants in an ethical manner. In your capstone class (your

Adolescent health brief Protecting Adolescent Confidentiality: A Response to One State’s “Parents’Bill of Rights” D 1 XX Patrick W. Butler,D 2 XX Ph.D., L.C.S.W.*, andD 3 XX Amy B. Middleman,D 4 XX M.D., M.S.Ed., M.P.H.

University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma Article History:Received September 19, 2017; Accepted March 10, 2018 ABSTRACT Purpose:In November, 2014, the State of Oklahoma enacted legislation potentially eliminating the pro- vision of conditional confidential pediatric care. A consent form for treatment specific to adolescent con- fidential care was developed in response. This study examines parent/guardian response to the consent form.

Methods:The consent to treatment form describes the clinical and developmental benefits of condi- tional confidential treatment of adolescent minors and asks parent/guardians to waive the right to: (1) access confidential portions of the medical record, (2) be present for the physical exam, (3) be present for risk behavior discussions, and (4) consent for hormonal contraception, if indicated.

Results:Of 269 parent/guardian respondents to the consent form, over 95% waived their rights for each of the four provisions.

Conclusions:When provided with information on the rationale for provision of conditional confidential care, a diverse group of parent/guardians in a conservative state overwhelmingly agree to this standard of care.

© 2018 Society for Adolescent Health and Medicine. All rights reserved. IMPLICATIONS AND CONTRIBUTION The development and use of comprehensive written con- sent for care for adolescents is an effective response to legislation potentially limit- ing conditional confidential- ity. When presented with the clinical and develop- mental benefits of confiden- tial treatment of adolescent minors, parent/guardians overwhelmingly agree to confidential care for their adolescents.

The provision of conditional confidential care in Adolescent Medicine as a standard in addressing teen risk behavior is a corner- stone of the subspecialty. Conditional confidentiality assures the patient that sensitive information from the medical visit will not be shared with others, including parents, unless there is reason- able belief of imminent danger to the patient or others in not doing so or if the information requires mandated reporting. Adolescents are more willing to communicate and seek care from physicianswho assure confidentiality, as privacy concerns decrease the will- ingness of adolescents to engage providers on sensitive issues [1 4]. Laws governing confidentiality in adolescent health care vary from country to country; in the United States, they vary state to state[5]. Despite significant variability in policy across legal jurisdictions regarding multiple areas of concern (e.g., access to the medical record, mental health and substance abuse treatment, and contraceptive care), pediatric providers remain committed to the standard of conditional confidentiality in providing high qual- ity care to adolescents[6,7]. The perception of erosion of“parental rights,”including control of information on adolescent sexual and reproductive health, is a focus of recent adolescent health legislation that endangers evi- dence-based practice regarding the provision of conditionally See Related Editorial on p. 265 Conflicts of Interest:Dr. Middleman receives royalties as section editor for UpTo- Date.com. Dr. Butler has no conflicts of interest to report.

* Address correspondence to: Patrick W. Butler, Ph.D., L.C.S.W., University of Oklahoma Health Sciences Center, 1200 Children's Avenue, Suite 12200, Oklahoma City, OK 73104.

E-mail address:[email protected](P.W. Butler).

1054-139X/© 2018 Society for Adolescent Health and Medicine. All rights reserved.

https://doi.org/10.1016/j.jadohealth.2018.03.015 Journal of Adolescent Health 63 (2018) 357 359 www.jahonline.org confidential care to adolescent patients[8]. In November, 2014, the State of Oklahoma enacted the Parents’Bill of Rights that gives par- ent/guardians full access to their child’s medical record (unless otherwise specified by law) and requires written parental consent to perform a physical examination on a child. This law adds to 1976 legislation addressing the ability of adolescents in Oklahoma to consent to their own healthcare; minors in Oklahoma may only consent independently to the use of hormonal contraception if they are or have been pregnant. A Consent for Treatment form (CTF) specific to confidential care in Adolescent Medicine clinic at The University of Oklahoma Children’s Hospital was developed in direct response to the Parents’Bill of Rights to protect established best practice in the care of adolescents. This study examines par- ent/guardian responses to the form’s requests to waive specific parental rights associated with their minor child’s care.

Methods Treatment providers and the legal counsel of OU Children’s Physicians developed a CTF in response to the law[9]. The form details the specific parent/guardian rights under the 2014 Okla- homa law, describes the clinical and developmental benefits of conditional confidential treatment of adolescent minors (under 18), and asks parents to waive their rights to:

see confidential portions of the record; be present for the child’s physical examination; be present for discussions of risk behaviors; consent to hormonal therapy, if indicated.

The CTF clearly states that refusal to waive rights does not impact whether or not care will be provided, only that parent/ guardians are required to read the form in order for the patient to be seen by the physician.

The Adolescent Medicine clinic at OU Children’sisarefer- ral-based subspecialty service serving a statewide population, with a small base of local primary care patients. Clinic front desk staff began distributing the CTF to parent/guardians for review and signatures in May, 2016; data for this study were collected between May, 2016 and January, 2017. The CTF is presented to all parent/guardians of minor patients, both new patients and return patients who had not yet signed the form, upon arrival to the clinic. If parents have questions and/or are not comfortable signing the form, they are told that the physi- cian will discuss their concernsas part of the scheduled visit.

The physician addresses the questions regarding the waiver of any specific right as the visit commences as an opportunity to advance dialog with parent/guardians on best practice in the treatment of adolescents. During the time frame of the study, no parents refused to review and sign the primary treatment portion of the form or left without their child being seen. This study was conducted as a quality assurance project and was granted exempt status after review by the Institutional Review Board of the University of Oklahoma Health Sciences Center. Results Two hundred sixty-nine patient CTFs were obtained during the study period (Table 1). Over 95% of parents waived the right to see confidential portions of the record, be present for a physical exam- ination, and be present for sensitive risk discussions (Table 2).

Among parent/guardians of female patients, over 96% waived theright to consent to hormonal therapy. Two hundred forty-six par- ent/guardians waived their rights to all four elements requested; six parent/guardians declined to waive their rights to all four.

Although numbers of those not waiving their rights were low, thus affecting power, chi-square analysis found no significant differen- ces in responses to any waiver item based on patient age, gender, race, ethnicity, or insurance provider. Efforts to promote best practice in the care of adolescents can be derailed by ill-informed laws that erode the provision of confi- dential care for adolescents. In this case, the assumption of the leg- islature was that the provision of best practice in the form of confidential care and maintaining an alliance with parents to sup- port their child’s care are mutually exclusive. The parents’demon- strated support of the standard of conditional confidential care in this study runs counter to laws being promulgated through the state legislature. When the rationale and evidence for conditional confidential care are presented to parent/guardians, parents make decisions consistent with best practices in the treatment of their minor children. Limitations of this study include possible selection bias of parents presenting for subspecialty care for their adoles- cents, a relatively high reading level of the CTF potentially result- ing in lack of full understanding of the form, and statistically inadequate power to determine differences based on demographic variables.

This study suggests that when provided with information on the rationale and efficacy of confidential care, a diverse group of parent/guardians in a conservative state supports this standard of care for their adolescent children. Table 1 Participant demographic characteristics. Total number of consent forms returned = 269 Variable N % Gender of patient Female 208 77.3 Male 61 22.7 Ethnicity Hispanic 41 15.2 Non-Hispanic 209 77.7 Race White 188 69.9 Black 54 20.1 American-Indian 15 5.6 Asian 3 1.1 Insurance Medicaid 149 55.4 Private 107 39.8 Table 2 Proportion of parent/guardians who waived their rights Waived the right to N % See the confidential record 257 95.5 Be present for physical exam 256 95.2 Be present for risk discussions 263 97.8 Consent for hormonal contraception a 200 96.2 All four rights waived 246 91.4 None of the four rights waived 6 2.2 aDenominator represents parent/guardians of female patients. 358P.W. Butler and A.B. Middleman / Journal of Adolescent Health 63 (2018) 357 359 Acknowledgments We would like to thank Heather McClure, JD, for her expertise and support in the development of the comprehensive consent form and review of thefinal manuscript. This brief report was ini- tially presented at a Poster Symposia at the 2017 SAHM Annual Meeting in New Orleans, LA. Supplementary materials Supplementary material associated with this article can be found, in the online version, atdoi:10.1016/j.jadohealth.2018.03.015. References [1]Ford CA, Thomsen SL, Compton B. Adolescents' interpretations of conditional confidentiality assurances. J Adolesc Health 2001;29:156. [2]Ford CA, Millstein SG, Halpern-Felsher BL, Irwin Jr. CE. Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care. A randomized controlled trial. JAMA 1997;278:1029.

[3]Lehrer JA, Pantell R, Tebb K, Shafer MA. Forgone health care among U.S. adoles- cents: associations between risk characteristics and confidentiality concern. J Adolesc Health 2007;40:218.

[4]Ford CA, Bearman PS, Moody J. Foregone health care among adolescents. JAMA 1999;282:2227.

[5] Guttmacher Institute, Minors’access to contraceptive services,State Laws and Policies (as of August 2016), 2016.

[6]American Academy of Pediatrics. Committee on Adolescence Policy Statement:

achieving quality health services for adolescents. Pediatrics 2008;121:1263.

[7]Ford CA, English A, Sigman G. Position paper of the society for adolescent medi- cine: confidential care for adolescents. J Adolesc Health 2005;35:160.

[8] Oklahoma Parents’Bill of Rights. Oklahoma House Bill 1384 (OK, 2014).[9]https://www.uptodate.com/contents/image?imageKey=PEDS%2F109404&to- picKey=PEDS%2F106&source=outline_link&search=confidentiality,%20adoles- cent &selectedTitle=1»43(Accessed January 10, 2018). P.W. Butler and A.B. Middleman / Journal of Adolescent Health 63 (2018) 357 359359