Providing Online Portal Access to Families of Adolescents and Young Adults with Diminished Capacity at an Academic Children's Hospital: A Case Report.

BACKGROUND: For caregivers of adolescents and young adults with severe cognitive deficits, or "diminished capacity," access to the medical record can be critical. However, this can be a challenge when utilizing the electronic health record (EHR) as information is often restricted in order to protect adolescent confidentiality. Having enhanced access for these proxies would be expected to improve engagement with the health system for the families of these medically complex adolescents and young adults. OBJECTIVES: To describe a process for granting full EHR access to proxies of adolescents with diminished capacity and young adults who are legally conserved while respecting regulations supporting adolescent confidentiality. METHODS: The first step in this initiative was to define the "diminished capacity" access class for both adolescents and young adults. Once defined, workflows utilizing best practice alerts were developed to support clinicians in providing the appropriate documentation. In addition, processes were developed to minimize the possibility of erroneously activating the diminished capacity access class for any given patient. To enhance activation, a support tool was developed to identify patients who might meet the criteria for diminished capacity proxy access. Finally, outreach and educations were developed for providers and clinics to make them aware of this initiative. RESULTS: Since activating this workflow, proxies of 138 adolescents and young adults have been granted the diminished capacity proxy access class. Approximately 54% are between 12 and 17 years with 46% 18 years and older. Proxies for both age groups have engaged with portal functionality at higher rates when compared to institutional rates of use by proxies of the general pediatric population. CONCLUSION: With this quality improvement initiative, we were able to enhance EHR access and engagement of families of some of the most complex adolescent and young adult patients without inadvertently compromising adolescent confidentiality.

Providers' Perspectives on Adolescent Confidentiality and the Electronic Health Record: A State of Transition.

PURPOSE: Electronic health records (EHRs) have led to more transparency and improvements in patient safety, yet electronic access to personal health information can pose significant threats to maintaining confidentiality for adolescents. To date, no studies have explored clinicians' perspectives on EHR functionality and institutional policies related to confidentiality and health information sharing for adolescents aged <18 years. METHODS: A Web-based survey was sent out via the national listserv of the Society for Adolescent Health and Medicine. All English-speaking members practicing in the U.S. were eligible to participate. The survey included questions about demographics, EHR functionality, information sharing, and attitudes about confidentiality within the EHR. RESULTS: Participants included 212 clinicians who consented to the survey and used an EHR to document clinical visits with minors. Most participants were physicians and nurse practitioners (96.5%), and 60.0% had been on their institution's EHR for >5 years. Positive findings included high levels of experience and comfort using the EHR and awareness of confidential features within their EHR. However, providers reported lack of training related to confidentiality within the EHR, low confidence in their EHR's ability to maintain confidentiality, and variation in approaches to portal access for adolescents and their adult proxies. CONCLUSIONS: Despite high comfort levels and robust EHR functionality at many institutions, significant concerns about adolescent confidentiality remain. Varying institutional approaches to protecting confidentiality underscores the need for a standardized and comprehensive framework to enable providers and institutions to take better care of adolescents in the age of EHRs.

Commercial Sexual Exploitation and Sex Trafficking of Children and Adolescents: A Narrative Review.

Commercial sexual exploitation and sex trafficking of children and adolescents represent a severe form of child abuse and an important pediatric health concern. Youth who are commercially sexually exploited have a constellation of clinical risk factors and high rates of unmet physical and mental health needs, including conditions that directly result from their victimization. Common physical health needs among commercially sexually exploited children and adolescents include violence-related injuries, pregnancy, sexually transmitted infections, and other acute infections. Common mental health conditions include substance use disorders, post-traumatic stress disorder, depression and suicidality, and anxiety. The existing literature indicates that trauma-informed approaches to the care of commercially sexually exploited youth are recommended in all aspects of their health care delivery. Additionally, medical education that attunes providers to identify and appropriately respond to the unique needs of this highly vulnerable group of children and adolescents is needed. The available research on commercial sexual exploitation and sex trafficking of children and adolescents remains fairly limited, yet is expanding rapidly. Especially relevant to the field of pediatrics, future research to guide health professionals in how best to identify and care for commercially sexually exploited children and adolescents in the clinical setting signifies a key gap in the extant literature and an important opportunity for future study.

Understanding Parent Perspectives Concerning Adolescents' Online Access to Personal Health Information.

BACKGROUND: Although today's youth are interested in using the internet to access and manage information related to their health, little information exists about parental attitudes towards the release of health information to adolescents. METHODS: Structured interviews were conducted with the parents of 83 adolescents detained at a large Northern California juvenile detention facility to examine parental perceptions toward allowing their children online access to their own health information. RESULTS: The majority of parents interviewed (70%) wanted their children to have online access to their own health information. Seventy-nine percent of these parents were also comfortable allowing their children to choose with whom they would share this information. CONCLUSIONS: This study is one of the first to examine parental attitudes towards providing adolescents access to their own health information, and the first among parents of underserved youth. This study demonstrates that parents may be quite supportive of allowing their adolescent children to have secure online access to their own health information.

In Their Own Voices: The Reproductive Health Care Experiences of Detained Adolescent Girls.

BACKGROUND: Adolescent girls involved with the juvenile justice system have higher rates of sexually transmitted infections and pregnancy than their nondetained peers. Although they may receive reproductive health care while detained, following clinician recommendations and accessing services in the community can be challenging. OBJECTIVES: This study aimed to determine the barriers this population faces 1) accessing reproductive health care and 2)following the recommendations they receive when they are in the community. METHODS: Adolescent girls at a juvenile detention facility completed online surveys about their demographics and sexual health behaviors. A subsequent semistructured interview assessed their experiences with reproductive health care services. RESULTS: Twenty-seven girls aged 14 to 19 were interviewed. The majority (86%) self-reported as Latina or Hispanic. The average age of sexual debut was 13.8 years. The major interview themes were 1) personal priorities and motivations affect decision making, 2) powerful external voices influence reproductive health choices, 3) accessing services "on the run" is particularly challenging, and 4) detention represents an opportunity for intervention and change. CONCLUSION: Adolescent girls who are detained within the juvenile justice system face reproductive health challenges that vary with their life circumstances. They frequently have priorities, external voices, and situations that influence their decisions. Clinicians who care for these young women are in a unique position to address their health needs. Eliciting girls' goals, beliefs, and influences through motivational interviewing, as well as developing targeted interventions based on their unique experiences, may be particularly helpful for this population.

Mental Illness Drives Hospitalizations for Detained California Youth.

PURPOSE: The purpose of the study was to describe inpatient hospitalization patterns among detained and nondetained youth in a large, total population of hospitalized adolescents in California. METHODS: We examined the unmasked California Office of Statewide Health Planning and Development Patient Discharge Dataset from 1997 to 2011. We considered hospitalized youth aged 11-18 years "detained" if admitted to California hospitals from detention, transferred from hospital to detention, or both. We compared discharge diagnoses and length of stay between detained youth and their nondetained counterparts in the general population. RESULTS: There were 11,367 hospitalizations for detained youth. Hospitalizations differed for detained versus nondetained youth: 63% of all detained youth had a primary diagnosis of mental health disorder (compared with 19.8% of nondetained youth). Detained girls were disproportionately affected, with 74% hospitalized for a primary mental health diagnosis. Detained youth hospitalized for mental health disorder had an increased median length of stay compared with nondetained inpatient youth with mental illness (≥ 6 days vs. 5 days, respectively). This group difference was heightened in the presence of minority status, public insurance, and concurrent substance abuse. Hospitalized detained youth discharged to chemical dependency treatment facilities had the longest hospital stays (≥ 43 days). CONCLUSIONS: Detained juvenile offenders are hospitalized for very different reasons than the general adolescent population. Mental illness, often with comorbid substance abuse, requiring long inpatient stays, represents the major cause for hospitalization. These findings underscore the urgent need for effective, well-coordinated mental health services for youth before, during, and after detention.

Immunization Coverage Among Juvenile Justice Detainees.

This study sought to (1) quantify the baseline immunization coverage of adolescents entering the juvenile justice system and (2) assess the effect of detention-based care on immunization coverage in youth. A cross-sectional retrospective chart review was performed of 279 adolescents detained at a large juvenile detention facility. Only 3% of adolescents had received all study immunizations prior to detention. Before detention, immunization coverage was significantly lower than that for the general adolescent population for all vaccines except the first doses of hepatitis A and varicella-zoster virus vaccines. Subsequent to detention, most individual immunization coverage levels increased and were significantly higher than in the general adolescent population. The routine administration of immunizations in the juvenile justice setting can help detained youth achieve levels of immunization coverage similar to their nondetained peers.

Internet access and attitudes toward online personal health information among detained youth.

OBJECTIVE: To assess Internet access and usage patterns among high-risk youth involved in the juvenile justice system, and to determine if health information technology tools might play a useful role in more actively engaging this population in their health care. METHODS: A sample of 79 youth between the ages of 13 and 18 years old underwent a structured interview while detained in a large, Northern California juvenile detention facility. After an institutional review board-approved assent/consent process, youth discussed their typical Internet use when not detained, as well as their attitudes toward online access to their personal health information (PHI). RESULTS: Detained youth from predominantly underserved, minority communities, reported high levels of access to the Internet while outside of the detention setting, with 97% reporting using the Internet at least once per month and 87% at least weekly. Furthermore, 90% of these youth expressed interest in accessing their PHI online and sharing it with either parents or physicians. CONCLUSIONS: Detained adolescents describe unexpectedly high usage of the Internet and online resources when they are outside of the juvenile hall setting. These youth show an interest in, and may benefit from, accessing their PHI online. Further studies are needed to understand the potential health benefits that may be realized by engaging this population through online tools.

Special requirements for electronic medical records in adolescent medicine.

Adolescents are a group likely to seek and, perhaps, most likely to benefit from electronic access to health information. Despite significant advances in technical capabilities over the past decade, to date neither electronic medical record vendors nor many health care systems have adequately addressed the functionality and process design considerations needed to protect the confidentiality of adolescent patients in an electronic world. We propose a shared responsibility for creating the necessary tools and processes to maintain the adolescent confidentiality required by most states: (1) system vendors must provide key functionality in their products (adolescent privacy default settings, customizable privacy controls, proxy access, and health information exchange compatibility), and (2) health care institutions must systematically address relevant adolescent confidentiality policies and process design issues. We highlight the unique technical and process considerations relevant to this patient population, as well as the collaborative multistakeholder work required for adolescent patients to experience the potential benefits of both electronic medical records and participatory health information technology.

Implementing an Interoperable Personal Health Record in Pediatrics: Lessons Learned at an Academic Children's Hospital.

This paper describes the development of an innovative health information technology creating a bidirectional link between the electronic medical record (EMR) of an academic children's hospital and a commercially available, interoperable personal health record (PHR). The goal of the PHR project has been to empower pediatric patients and their families to play a more active role in understanding, accessing, maintaining, and sharing their personal health information to ultimately improve health outcomes. The most notable challenges proved more operational and cultural than technological. Our experience demonstrates that an interoperable PHR is technically and culturally achievable at a pediatric academic medical center. Recognizing the complex social, cultural, and organizational contexts of these systems is important for overcoming barriers to a successful implementation.

The health status of youth in juvenile detention facilities.

Youth exiting detention facilities have particularly high rates of co-occurring health-risk behaviors, while lacking access to the health care system. Not surprisingly, these youth suffer a disproportionate share of adolescent morbidity and mortality. Their time of incarceration often represents their only significant contact with a health care provider outside of an emergency setting. As such, it is critical that health care providers utilize the opportunity to educate and connect these youth with community resources to facilitate their access to health care upon their reemergence into the community. We review the factors affecting the health of youth in detention, and the health problems that are among the greatest sources of morbidity and mortality in this adolescent population.