John Reiss

Health Care Transition: Youth, Family, and Provider Perspectives

Objective. This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? Methods. A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. Results. Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. Conclusion. This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults’ and family members’ lack of preparation for successful participation in the adult health care system contributes to problems with HCT.

Measuring the Transition Readiness of Youth with Special Healthcare Needs: Validation of the TRAQ—Transition Readiness Assessment Questionnaire

OBJECTIVE The aim of this study was to develop the Transition Readiness Assessment Questionnaire (TRAQ), a measure of readiness for transition from pediatric to adult healthcare for youth with special health care needs (YSHCN). METHODS We administered TRAQ to 192 YSHCN aged 16-26 years in three primary diagnostic categories, conducted factor analysis, and assessed differences in TRAQ scores by age, gender, race, and primary diagnosis type. RESULTS Factor analysis identified two TRAQ domains with high internal consistency: Skills for Self-Management and Skills for Self-Advocacy. Each domain had high internal consistency. In multivariate regression models, older age and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Management, and female gender and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Advocacy. CONCLUSIONS Our initial validation study suggests the TRAQ is a useful tool to assess transition readiness in YSHCN and to guide educational interventions by providers to support transition.

Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues: A Scientific Statement From the American Heart Association

Many children born with complex childhood illnesses that historically caused early death are now surviving into adulthood with the expectation of leading meaningful and productive lives. They will ultimately need to transition their care from pediatric to adult-centered care. Unfortunately, in the absence of structured programs to guide this transition, there is often delayed or inappropriate care, improper timing of the transfer of care, and undue emotional and financial stress on the patients, their families, and the healthcare system. At its worst, and as frequently happens now, patients are lost to appropriate follow-up. In fact, the number of adults with congenital heart disease (CHD) in the United States is rising exponentially and now exceeds 1 000 000.1,–,7 At least half of these patients may have complex CHD. Fewer than 30% of adults with CHD are seen by appropriate specialized providers. Fewer than 15% of these patients, who are seen in specialty adult CHD (ACHD) clinics, have CHD that is classified as severe.8 Thus, adolescents with CHD constitute a growing population of individuals for whom a well-planned and well-executed “transition process” is essential. The goals of a formal transition program are to prepare young adults for transfer of care. It should provide uninterrupted health care that is patient centered, age and developmentally appropriate, flexible, and comprehensive. It should include age-appropriate education about medical conditions and promote skills in communication, decision making, self-care, and self-advocacy.9,–,13 It should foster greater personal and medical independence and a greater sense of control over health, healthcare decisions, and psychosocial environment. The ultimate goal of a transition program is to optimize the quality of life (QOL), life expectancy, and future productivity of young patients.14 We acknowledge that the development of ideal transition programs is a …

Task Force 2: special health care needs of adults with congenital heart disease

Transition into the adult health care system is crucial for patients with congenital heart disease (CHD), as well as for adolescents with many other chronic conditions. Indeed, “arranging efficient and caring transfer for adolescents from pediatric to adult care (is)…one of the great challenges

Adolescent Transition to Adult Care in Solid Organ Transplantation: A consensus conference report

Transition of care from pediatric to adult‐oriented health care providers is difficult for children with special health care needs. Children who have received solid organ transplants and their providers experience the same difficulties and frustrations as children with other major illnesses. A consensus conference was organized by several transplant organizations to identify major issues in this area and recommend possible approaches to easing the process of transition for solid organ transplant recipients. This report summarizes the discussions and recommendations.

Grief responses of pediatric house officers to a patient's death.

Twenty-five pediatric house officers were surveyed (14 M; 11 F) to assess their behavioral and psychophysiologic responses to patient death. Vignettes about the deaths of two pediatric patients were included as part of a self-administered questionnaire. The vignettes were followed by 14 behavioral and 20 psychophysiologic responses to the deaths depicted, and physicians were asked to indicate the expected occurrence of these reactions for themselves and for an ideal physician. Reported reactions were found to be similar to grief responses experienced with the death of a loved one. Significant differences were found between the responses of female and male house officers to patient death. Additionally, differences were found between the manner in which the physicians personally responded to a patients death in comparison to the way they considered an ideal physician would respond. Practical suggestions are given, based on these data, for inclusion of information in death education courses for physicians.

Health care transition for emerging adults with chronic health conditions and disabilities.

Work on the issue of health care transition began in the late 1980s when US Surgeon General C. Everett Koop, MD, and other child health leaders recognized that pediatric providers and facilities alone could not address the ongoing medical and related needs of a rapidly growing population of emerging adults with chronic health conditions and disabilities. Since then, efforts to improve the health care transition (HCT) process have included the development of position papers,1 consensus statements,2 and guidelines;3 federal funding of demonstration projects;4,5 and the implementation of condition-specific transition programs.6 However, the pediatric community has been slow to implement recommended HCT practices.7 Most pediatric practices do not routinely offer transition support services, only one third of pediatricians report making referrals to adult physicians for even some of their patients, and less than 15% provide transition educational materials to adolescents and their parents.8 As documented in the growing HCT literature, multiple provider, patient/ family, and system-level issues contribute to this slow progress. These issues range from the limited time available to prepare adolescents and their families,

Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues

Many children born with complex childhood illnesses that historically caused early death are now surviving into adulthood with the expectation of leading meaningful and productive lives. They will ultimately need to transition their care from pediatric to adult-centered care. Unfortunately, in the absence of structured programs to guide this transition, there is often delayed or inappropriate care, improper timing of the transfer of care, and undue emotional and financial stress on the patients, their families, and the healthcare system. At its worst, and as frequently happens now, patients are lost to appropriate follow-up. In fact, the number of adults with congenital heart disease (CHD) in the United States is rising exponentially and now exceeds 1 000 000.1,–,7 At least half of these patients may have complex CHD. Fewer than 30% of adults with CHD are seen by appropriate specialized providers. Fewer than 15% of these patients, who are seen in specialty adult CHD (ACHD) clinics, have CHD that is classified as severe.8 Thus, adolescents with CHD constitute a growing population of individuals for whom a well-planned and well-executed “transition process” is essential. The goals of a formal transition program are to prepare young adults for transfer of care. It should provide uninterrupted health care that is patient centered, age and developmentally appropriate, flexible, and comprehensive. It should include age-appropriate education about medical conditions and promote skills in communication, decision making, self-care, and self-advocacy.9,–,13 It should foster greater personal and medical independence and a greater sense of control over health, healthcare decisions, and psychosocial environment. The ultimate goal of a transition program is to optimize the quality of life (QOL), life expectancy, and future productivity of young patients.14 We acknowledge that the development of ideal transition programs is a …

Transition of care: What Is the pediatric hospitalist's role? An exploratory survey of current attitudes†

OBJECTIVE Survey of current attitudes of pediatric hospitalists related to transition of care. METHODS We developed and piloted a survey that was validated by an expert on transition. It was introduced it to the AAP/Pediatric Hospital Medicine Listserv using Survey Monkey(TM). Any participant who agreed to the informed consent was included in the survey. RESULTS Patients aged 16-17 with chronic medical conditions were taken care of by pediatric hospitalists 70% of the time. Patients aged 18-20 were cared for by pediatric hospitalists 36.8% of the time. Advantages of hospitalist participation in healthcare transition include improved continuity of care and quality of care. The biggest impediments might be lack of time and resources. Most surveyed would be interested in a web based educational module to develop their understanding of healthcare transition. CONCLUSION The survey provides a snapshot of current attitudes of pediatric hospitalist involvement in transition of care. Pediatric hospitalists are interested in participating in healthcare transition. Although more research is needed to compare current models of transition services and a hospitalist model, the perception for inpatients is that better quality of care can be expected. Targeted educational modules might provide a foundation for pediatric hospitalists to build their scope of practice to include transition services.

Age Group Differences in Healthcare Access for People With Disabilities: Are Young Adults at Increased Risk?

PURPOSE The purpose of this study was to quantify and describe the population of young adults with disability in Florida and to assess correlates of healthcare access in this population in contrast with adults belonging to middle and older age groups. METHODS This study analyzed data of 36,704 respondents obtained from the 2007 Florida Behavioral Risk Factor Surveillance System. A test for homogeneity of the risk difference across the three age groups was conducted using inverse weighting to adjust for confounding and selection bias. RESULTS The adjusted model for risk difference of not being able to see a doctor in the past 12 months because of cost was significantly heterogeneous across age groups (χ(2)(2df)F value = 12.40, p < .01). The risk difference between population of young adults with disability and their age peers decreased significantly across the groups. The risk difference was 15.5% for those aged 18-29, 11.9% for those aged 30-64, and 2.1% for those aged ≥65. CONCLUSIONS This article quantifies the differences in risk and access to health care between young adults with and without disability, using population-based data. It provides indirect evidence of the widely held belief that there is a problem in healthcare transition in the United States warranting continued investigation and intervention.