Sophia Jan

International and Interdisciplinary Identification of Health Care Transition Outcomes

IMPORTANCE There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs. OBJECTIVE To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants. DESIGN, SETTING, AND PARTICIPANTS A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014. EXPOSURES Health care transition outcomes of adolescents and young adults with special health care needs. MAIN OUTCOMES AND MEASURES Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important). RESULTS The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities. CONCLUSIONS AND RELEVANCE Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.

The health care transition research consortium health care transition model: A framework for research and practice

The body of health care transition (HCT) research is in the early stages of development. One of the major limitations of this developing field of research is the lack of theoretically-directed studies. This research limitation has hindered understanding of the variables contributing to successful HCT. The inadequate understanding of HCT is due largely to the absence of an adequate conceptual model that addresses the complexity and the relationships amongst variables that influence HCT outcomes among adolescents and emerging adults with special health care needs (AEA-SHCN). Existing conceptual models do not sufficiently address the significant interrelationships amongst variables to explain, predict and/or control AEA-SHCNs biopsychosocial HCT outcomes. This article provides a description of a health care transition theoretical model developed by the international and interdisciplinary Health Care Transition Research Consortium (HCTRC) that can be applied for testing in research and serve as a framework for clinical practice and policymaking. The HCTRC model is composed of four domains that are considered integral to the HCT phenomenon: Individual, Family/Social Support, Environment, and the Health Care System. The HCTRC model specifies the variables, processes, and potential mediators and moderators that affect the HCT outcomes.

Disaster Resilience and People with Functional Needs

Hurricanes and other disasters can have devastating effects on people who depend on home nursing, personal care attendants, or electric medical technologies. Some key policies can help to strengthen our infrastructure to increase community resilience during disasters.

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by health care utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients’ quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.

The Impact of a Large-Scale Power Outage on Hemodialysis Center Operations

INTRODUCTION On June 29, 2012, mid-Atlantic storms resulted in a large-scale power outage affecting up to three million people across multiple (US) states. Hemodialysis centers are dependent on electricity to provide dialysis care to end-stage renal disease patients. The objective of this study was to determine how the power outage impacted operations in a sample of hemodialysis centers in the impacted regions. METHODS The sample consisted of all hemodialysis centers located in the District of Columbia and a total of five counties with the largest power losses in West Virginia, Virginia, and Maryland. A semi-structured interview guide was developed, and the charge nurse or supervisor in each facility was interviewed. The survey questions addressed whether their centers lost power, if so, for how long, where their patients received dialysis, whether their centers had backup generators, and if so, whether they had any problems operating them, and whether their center received patients from other centers if they had power. RESULTS Calls were placed to 90 dialysis centers in the sampled areas and a 90% response rate was achieved. Overall, hemodialysis operations at approximately 30% (n = 24) of the centers queried were impacted by the power outage. Of the 36 centers that lost power, 31% (n = 11) referred their patients to other dialysis centers, 22% (n = 8) accommodated their patients during a later shift or on a different day; the rest of the centers either experienced brief power outages that did not affect operations or experienced a power outage on days that the center is usually closed. Some centers in the study cohort reported receiving patients from other centers for dialysis 33% (n = 27). Thirty-two percent (n = 26) of the centers queried had backup generators on site. Eleven percent (n = 4) of the centers experiencing power outages reported that backup generators were brought in by their parent companies. CONCLUSIONS Comprehensive emergency planning for dialysis centers should include provisions for having backup generators on site, having plans in place for the timely delivery of a generator during a power outage, or having predesignated backup dialysis centers for patients to receive dialysis during emergencies. Most dialysis centers surveyed in this study were able to sustain continuity of care by implementing such pre-existing emergency plans.

Healthcare System Supports for Young Adult Patients with Pediatric Onset Chronic Conditions: A Qualitative Study

Over 90% of children with chronic conditions survive into adulthood necessitating primary care teams to care for adults with pediatric-onset chronic conditions. This study explores practice supports and barriers to care for this population via qualitative techniques. Using in depth interviews with twenty-two healthcare providers practice supports identified include: formalizing intake processes, interoperable electronic medical records, and leveraging care coordination. Barriers identified included: definition of the medical team, lack of appropriate medical records, time and administrative burden, lack of training, and financial constraints. Themes may be utilized to design interventions and improve care coordination for patients with pediatric-onset chronic conditions.

Transitioning From “Sick Kid” to Community Health Worker: Building Better Bridges to Adult Care

* Abbreviations: AYA — : adolescent and young adult CHOP — : Children’s Hospital of Philadelphia YCHW — : youth community health worker The term “transition to adulthood” is used to describe the process that adolescents and young adults (AYAs) with special health care needs experience as they become adults. This process includes not only the often complex transfer of care from pediatric to adult health care systems, but also dynamic changes in social situations, education, employment, recreation, and more. The National Center for Health Care Transition Improvement (Got Transition) outlines 6 core elements for the safe and effective transition to adulthood and transfer of care from pediatric to adult health care systems.1 However, pediatric providers are often wary of transferring their patients to adult care, and adult providers feel unprepared to accept these patients into their practices, leaving patients and families feeling abandoned and confused.2–4 We present a model at Children’s Hospital of Philadelphia (CHOP) for embedding the patient perspective into a multidisciplinary team tasked with addressing transition to adulthood. We fully integrate a former patient at CHOP with personal experience with chronic illness and transition to adulthood as the youth community health worker (YCHW) into a team of physicians, a nurse practitioner, a nurse coordinator, and social workers. The YCHW is tasked with generalizing personal experiences with chronic illness to encourage goal-setting for AYA patients and viewing AYA patients, especially those with special health care needs, in a holistic way for providers. Our transition team coordinates care for patients with medically and socially complex backgrounds to transfer their medical care to adult providers safely while also addressing psychosocial needs such as insurance, post–high school planning, and medical decision-making support. The team also … Address correspondence to Katherine Wu, Roberts Center for Pediatric Research, 11th Floor, 2716 South St, Philadelphia, PA 19146. E-mail: wuk4{at}email.chop.edu

Young Adults With Chronic Illness: How Can We Improve Transitions to Adult Care?

* Abbreviation: Med-Peds — : Internal Medicine/Pediatrics As another busy night unfolded in the pediatric emergency department, I opened the next patient’s chart: Male. Early 20s. Sickle cell disease. I felt a faint tug of familiarity while skimming through his medical record, but it was not until I walked into the room that I placed D.M. as a patient I had treated for a sickle cell pain crisis a few months earlier. Despite the pain he was experiencing at that time, I recalled his excitement as he shared his dreams of entering the medical field. Now, that enthusiasm was replaced with despondence, making him barely recognizable as the young man I knew before. The chief complaint on his chart read “ingestion.” He told me how his previous hospitalization was supposed to be his last pediatric admission after more than 2 decades of pediatric care. He had an appointment scheduled with an adult hematologist in several weeks, but he developed severe pain earlier that morning and went to the adult emergency department for the first time. As a combined Internal Medicine/Pediatrics (Med-Peds) resident who rotates through both settings, I understood just how different and potentially traumatic that experience could have been. In the adult emergency department, he received intravenous fluids and an underdose of opiates for his level of tolerance—after all, … Address correspondence to John C. Berens, MD, Internal Medicine/Pediatrics, University of Pennsylvania, 3400 Spruce St, Philadelphia, PA 19104. E-mail: john.berens{at}uphs.upenn.edu