Advancing pediatric primary care practice: Preparing youth for transition from pediatric to adult medical care, a quality improvement initiative.

BACKGROUND: Despite well-known guidelines to prepare adolescents to transition to adult care, research has shown that this is done less than 25% of time in pediatric practice. This quality improvement (QI) project aimed to improve the transition readiness process for all adolescents aged 14-18 at health care maintenance visits. METHODS: A multidisciplinary team conducted a quality improvement initiative in a large, urban pediatric academic teaching practice serving a low-income, multi-ethnic population. The team developed transition interventions through successive Plan-Do-Study-Act cycles. They included a formal transition readiness assessment tool, provider-delivered education related to transition readiness, and delivery of a transition brochure for all adolescents. The team used run charts to follow the rate of formal transitions discussions documented in the electronic medical record. RESULTS: Over the course of 36 months the outcome measure of provider documented transition readiness discussions increased from 19 to 64% of the time. Over the same course of time, the process measures of transition brochure distribution and completion of the readiness assessment tool increased from 0 to 94% and 0 to 84% respectively. CONCLUSIONS: QI methodology and multidisciplinary coordinating to streamline workflow, distribution of transition information, readiness assessment and provider discussion and documentation can be successfully incorporated into a busy primary care setting. By formalizing and standardizing the transition readiness process, pediatric providers can improve young adults' readiness to transition to adult medical care.

Health-care Transition: A Vital Part of Care, Growth, and Change for Pediatric Patients.

Preparing all youth for the transition to adult-oriented care, adulthood itself, and a greater responsibility for their own health and health-care is an essential part of pediatric care. This process, typically described as health-care transition, can occur throughout ongoing pediatric health-care to prepare patients for transfer to an adult clinician and integration into adult care. Gaps remain in practice and in outcomes research regarding health-care transition. This review discusses recent literature, details best practices, and recommends guidance and tools to assist pediatric clinicians in providing a smooth transition process and a successful transfer to adult care for youth with and without special health-care needs.

Multidisciplinary Support for Healthcare Transitioning Across an Urban Healthcare Network.

BACKGROUND: A successful transition from pediatric to adult oriented health care is a vital process in maintaining a patient-centered medical home for youth with special health care needs (YSHCNs). We assessed practices of pediatric providers who transition YSCHNs to adult-oriented medical care in a large urban academic healthcare network. METHODS: A cross-sectional Web-based survey was distributed to 376 generalist and subspecialist pediatric providers. Survey assessed provider-reported utilization of 11 Essential Steps adapted from the 2002 Consensus Statement on Health Care Transitions for YSHCNs, and recent transitioning literature. Compliance score (CS11) was calculated as a sum of steps completed. Additional items assessed knowledge of transitioning literature and respondent demographics. RESULTS: Survey achieved a 28% response rate (n=105), of whom 84 reported assisting transitioning YSHCNs. Only 16.7% of these respondents were compliant with 7 or more of the 11 Essential Steps. Respondents who identified social work or nursing were more likely to have CS11 scores ≥7 compared to those without and were more likely to be compliant with specific steps. CONCLUSION: We found limited and incomplete utilization of recommended transitioning steps for YSHCNs by pediatric providers within a large urban healthcare network. Access to support from social work and nursing was associated with greater utilization of specific recommended steps, and with more optimal compliance. Further research needs to assess the transitioning practices of all members of the multidisciplinary team and whether operationalizing healthcare transition for YSHCNs as a multidisciplinary activity impacts the transitioning process and patient outcomes.

Caregivers' Perspective on Successful Health Care Transition Outcomes for Adolescents and Young Adults With Special Health Care Needs.

PURPOSE: There is limited caregiver-reported evidence determining health care transition (HCT) outcomes for their adolescents/young adults with special health care needs (AYA-SHCN). A subcommittee of the International and Interdisciplinary Healthcare Transition Research Consortium aimed to identify multidimensional outcomes of a successful HCT among AYA-SHCN based on parents/caregivers' perspectives. METHODS: After literature review and expert interviews, a three-stage Delphi process identified HCT outcomes based on parents/caregivers' perspectives. Participants were parents/caregivers of patients attending the Victory Junction Therapeutic Camp and a nationally representative sample from Cint Healthcare Digital Solutions Platform. The cumulative 272 responses collected on a Health Insurance Portability and Accountability Act-compliant web-based engine (Qualtrics) rated potential HCT outcomes by level of importance on a Likert scale from 1 (not important) to 9 (very important) and narrowed in subsequent iterations. RESULTS: The Delphi process included 127 (Stage 1), 82 (Stage 2), and 63 (Stage 3) parents/caregivers. The initial 25 HCT outcomes were narrowed to 13, across four major domains: coping/satisfaction, behavioral, structural, and HCT/healthcare-focused outcomes. The top outcome was "My child takes their medications as prescribed." Several traditionally considered important outcomes for HCT were eliminated. DISCUSSION: Thirteen HCT outcomes for AYA-SHCN were identified in four major domains: coping/satisfaction, behavioral, structural, and HCT/healthcare focused. Future research in larger samples would allow stratification to represent diverse patients and caregiver populations. Identifying international consensus-derived outcomes among parents/caregivers is imperative for the evaluation of HCT preparation strategies that ensure appropriate support for diverse AYA-SHCN and their families during this process and enable implementation of the most effective interventions.

Severe osteopathia striata with cranial sclerosis in a female case with whole WTX gene deletion.

Osteopathia striata with cranial sclerosis (OSCS) is caused by truncating mutations or deletions in the X linked gene, WTX, and is characterized by sclerotic striations of the metaphyses and diaphyses of long bones, pelvis, and scapula, along with craniofacial hyperostosis. Females typically manifest with craniofacial dysmorphisms including macrocephaly, hypertelorism, depressed nasal bridge, and hypoplastic maxilla, often have cleft palate, and less often extra skeletal anomalies. Here we report on a sporadic female patient with OSCS born at 33 weeks, with coarse facies, an abnormal head shape, cleft palate, pyloric stenosis, a small VSD, and laryngotracheomalacia sufficiently severe to require tracheostomy placement. Characteristic radiologic findings were apparent on skeletal survey and cranial CT. At age 5, she showed mild delays in neurodevelopmental milestones. A deletion of WTX and the adjacent gene ASB12 was detected via MLPA and there was no skewing of the X-chromosome inactivation pattern (58:42). Neurodevelopmental delays can manifest in females with OSCS and deletions at the WTX locus, but deletion of the ASB12 gene in this case suggests it is unlikely to contribute to the pathogenesis of this complication. Implication of ASB12 in the patient's other unique features such as laryngotracheomalacia and pyloric stenosis is also unlikely. This case illustrates an early presentation of severe OSCS in a female without skewing of the X-chromosome inactivation pattern, emphasizing the variable expressivity of this disorder.

Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy.

Cerebral palsy (CP) is the most common motor disorder of childhood, with prevalence estimates ranging from 1.5 to 4 in 1000 live births. This clinical report seeks to provide primary care physicians with guidance to detect children with CP; collaborate with specialists in treating the patient; manage associated medical, developmental, and behavioral problems; and provide general medical care to their patients with CP.

Transition Navigator Intervention Improves Transition Readiness to Adult Care for Youth With Sickle Cell Disease.

OBJECTIVE: Adolescents and young adults (AYA) with sickle cell disease (SCD) experience high rates of acute care utilization and increased morbidity. At this high-risk time, they also face the need to transition from pediatric to adult services, which, if poorly coordinated, adds to heightened morbidity and acute care utilization. The study objective was to characterize the feasibility, acceptability, and short-term efficacy of a protocolized transition navigator (TN) intervention in AYA with SCD. METHODS: We developed a protocolized TN intervention that used ecological assessment and motivational interviewing to assess transition readiness, identify goals, and remove barriers to transition, and to provide disease and pain management education and skills to AYAs with SCD. RESULTS: Ninety-three percent (56/60) of enrolled individuals completed the intervention. Participation in the TN program was associated with significant improvement in mean transition readiness scores (3.58-4.15, P < .0001), disease knowledge scale (8.91-10.13, P < .0001), Adolescent Medication Barriers Scale (40.05-35.39, P = .003) and confidence in both disease (22.5-23.96, P = .048) and pain management (25.07-26.61, P = .003) for youth with SCD. CONCLUSION: The TN intervention was acceptable to youth with SCD, feasible to implement at an urban academic medical center, and addressed barriers to transition identified by the youth. Longer-term assessment is needed to determine if the TN intervention improved successful transfer to and retention in adult care.

Discussing Future Goals and Legal Aspects of Health Care: Essential Steps in Transitioning Youth to Adult-Oriented Care.

Discussing realistic future goals with the adolescent alone and with family, and reviewing legal aspects of health care transition (HCT), are essential steps in the transition from pediatric to adult-oriented care. Secondary analysis of datasets from 2 studies related to HCT assessed differences in provider practice for youth with and without special health care needs (SHCNs). Across both datasets, between 57% and 68.6% of providers reported some discussion of future goals with adolescent or with family. However, only 28.6% to 31% of providers reported discussing future goals with youth with SHCNs alone. It was rare for providers to report discussing legal aspects of HCT with any youth. Findings identify a gap in discussing future goals and legal aspects of HCT, as part of routine care for adolescents. Additional research to understand barriers and improve likelihood of these steps within HCT is needed.

Pediatricians Transitioning Practices, Youth With Special Health Care Needs in New York State.

OBJECTIVE: To assess current practices of New York State pediatricians as they transition youth with special health care needs to adult-oriented medical care. METHODS: A survey of New York State pediatricians included 6 critical steps from 2002 consensus statement, 11 essential steps adapted from recent literature, and questions targeting age of starting transition and availability of transition policy. RESULTS: Of 181 respondents, only 11% have a transition policy. Most assist patients in transition process; identify an adult provider (92%); and create portable medical summary (57%). Only 3% start planning process at recommended age. No respondents are compliant with all 6 critical steps; subspecialists were more likely to report compliance to more than 4 steps. CONCLUSIONS: Participating pediatricians are making gains, yet effort is needed, to incorporate the essential steps into practice for transitioning youth with special health care needs. Recognition of barriers, use of electronic tools, and clarifying subspecialist's approach, may improve compliance with transition recommendations.