Health Care Transition Programs Research Articles

Disparities in pediatric hospital use during transition to adult healthcare for young adults with childhood-onset chronic conditions.

Young adults (YA) with childhood-onset chronic conditions-particularly YA with cystic fibrosis (CF), congenital heart disease (CHD), and sickle cell disease (SCD)-continue to have pediatric hospital admissions. Factors associated with this continued pediatric hospital use remain underexplored. To determine if pediatric hospital use by YA differed (1) across conditionand (2) within each condition by sociodemographic factors. Conducted a cross-sectional analysis of admissions for YA 22-35 years with CF, CHD, and SCD from 2016 to 2020 in the National Inpatient Sample. Admissions for YA with CF, CHD, and SCD were identified by international classification of diseases, 10th revision-clinical modification diagnosis codes. To determine if conditions or sociodemographic factors were associated with YA pediatric hospital use, we used multivariable logistic regression with separate models for the different objectives. YA with SCD had lower odds of pediatric hospital use compared to YA with CF. Relationships between sociodemographic factors and pediatric hospital use varied. Black YA with both CF and CHD had lower odds of pediatric hospital use than white YA with CF and CHD. For YA with SCD, despite 17,810 (6.5%) having rural residence, zero (0) had pediatric hospital use; whereas YA with CF living in a rural area had greater odds of pediatric hospital use compared to urban residents. YA with SCD used pediatric hospitals less than YA with either CF or CHD. Coupled with our findings that Black YA with CF and CHD had less pediatric hospital use, these data may reflect systematic racial differences within pediatric to adult healthcare transition programs.

Comprehensive adolescent healthcare transition program for congenital adrenal hyperplasia: A quality improvement initiative

Background and significanceCongenital adrenal hyperplasia (CAH) is a genetic condition impairing adrenal steroid production, requiring lifelong steroid replacement, leading to decreased quality of life and a shortened lifespan. Preparing and supporting adolescents with CAH to develop health-related knowledge, skills, and decision-making during the pediatric-to-adult healthcare transition (HCT) is a priority. Many adolescents with CAH do not receive adequate HCT and do not attend follow-up care after transfer to an adult setting. The Comprehensive Adolescent Healthcare Transition (CAH-T) program was developed using CAH care guidelines and the Got Transition Six Core Elements of Healthcare Transition approach. PurposeThis quality improvement (QI) initiative aimed to evaluate clinicians’ utilization and acceptance of the CAH-T program for addressing the HCT needs of adolescents with CAH in a southeastern United States pediatric endocrine clinic. InterventionBaseline demographics, the Health Care Transition Feedback Survey for Clinicians, and the Current Assessment of Healthcare Transition Activities were measured using surveys adopted from Got Transition. Clinicians were educated on the CAH-T program and patient education materials. Following implementation, clinicians documented all CAH-T program-recommended interventions provided in the clinic. Surveys were reassessed using repeated measures. EvaluationTwenty-nine clinicians participated. Eight separate patients received 53 total CAH-T program-recommended interventions during the three-month observation period. Paired assessment of the Current Assessment of Healthcare Transition Activities scores increased from 15.29 ± 8.32 to 24.00 ± 6.11 (p = 0.018; r = 0.63). The Health Care Transition Feedback Survey for Clinicians mean scores increased from 2.75 ± 0.26 to 3.30 ± 0.43 (p = 0.018; r = 0.59). These measures indicate increased utilization of HCT services and acceptance of HCT value. Clinicians suggested that time limitations, English-only transition education materials, and lack of electronic medical record integration were significant barriers to HCT support. Implications for practiceA structured HCT program ensures clinicians provide adolescents with CAH support and guideline-based care. The CAH-T program offers an example of developing and implementing an HCT program for adolescents with CAH. Integration in the electronic medical record will ultimately increase program sustainability.

Evaluation of Capacity for Implementation of Pediatric-to-Adult Care Transition for Sickle Cell Disease in Brazil

Background In low- and middle-income countries (LMICs), such as Brazil, survival rates for sickle cell disease (SCD) patients are approaching 80%. As more adolescents with SCD survive into adulthood, it is essential to establish proper preparation and integration into adult care. Healthcare Transition (HCT) programs can assist in transitioning pediatric patients with chronic illnesses into adult care, but such programs are not yet available in Brazil. Therefore, it is crucial to evaluate the capacity for implementing HCT practices before initiating such a program. Methods We undertook an assessment of the capacity for HCT implementation using the Context Assessment for Community Health (COACH) tool andmeasured the level of transition practices using the Current Assessment of HCT Activities for Transitioning Youth to an Adult Health Care Clinician (GotTransition HCT activities scale). These tools were administered at two institutions in the two largest cities in Brazil, Rio de Janeiro and São Paulo. As a comparison, data was collected from an institution in the United States (US) with a well-functioning HCT program. The COACH tool, a validated measure of resource capacity, consists of 49 items with eight subscales which were adapted to HCT: resources, community engagement, work commitment, informal payment, leadership, work culture, monitoring services (5-point scale, lower values reflecting less capacity), and sources of knowledge (0-1 scale, lower values reflecting less capacity). GotTransition, an assessment of current health care skills for transition to adult care, consists of eight components scored on a 1-4 scale with higher scores representing higher engagement with transition activities. Survey participants were healthcare staff caring for children and adults with SCD. Surveys were completed on the online platform Qualtrics from February to July 2023. Statistical analysis was conducted using SAS version 9.4. Results 86 staff from the SCD clinics completed the COACH tool (26 from the US and 60 from the Brazilian institutions). Of those, 78% were female and 38% were aged 40-54. 55 participants (64%) identified the role of physician or high-level/advanced care provider, the remaining were psychologists, social workers, and community partners (Table 1). Completion rate was 81% (26 out 32) for the US and 75% (60 out of 80) for the Brazilian institutions. Overall, COACH showed high internal consistency (Cronbach's α range: 0.69-0.93). The lowest-scored subscales by all institutions were community participation and unofficial payments, with average scores of 2.96 and 2.33, respectively. The highest-rated subscales were leadership and work culture, with average scores of 3.99 and 3.97, respectively. Resource availability, work commitment, and community participation were lower in Brazil, relative to the US, (2.94, 3.03 vs. 4.08, p<0.0001 and 3.68, 3.49 vs 4.25 p=0.03, and 2.57, 2.85 vs 3.64 p=0.04 respectively). No significant differences in occupation were noted across all subscales (p>0.05). A total of 15 SCD clinic leaders, all physicians (3 from the US and 12 from the Brazilian institutions) across the three institutions completed the GotTransition HCT activities survey. Overall scores were approximately twice higher in US than in Brazilian institutions (15.29, 15.8 vs 30.33), with all subdomains scoring lower for the Brazilian institutions (Table 2). Discussion Implementation of HCT programs is a high priority in Brazil, given the growing survival rates for children with SCD. Our data highlights a well-connected community of healthcare workers, but also reveals that the current level of HCT activities for SCD in Brazil is low. This underscores the urgent need for transition intervention. The key facilitators for successful HCT implementation in Brazil are strong leadership and a motivated workforce. However, community participation and finances are weak points that require implementation strategies during program implementation. Compared to the US, both Brazilian institutions scored significantly lower on all components needed for transition, emphasizing the need for intervention. This project is the first to evaluate the readiness for HCT implementation in a low- and middle-income country. Designing a context-specific HCT program that suits low-resource settings will improve outcomes for individuals with SCD in the country.

FRI594 Results Of A New Transition Of Care Process From Pediatric To Adult Diabetes Services

Abstract Disclosure: F.I. Cooper: None. N. Vyas: None. J. Pierce: None. A. Kulasingham: None. Adolescence is a challenging time in a child’s life and can be even more stressful for those living with diabetes. It has been shown that glycemic levels worsen in young adulthood due to factors such as increasing insulin resistance and gaps in care during the transitioning from pediatric to adult diabetes care. Data suggest that beginning transition preparation in early adolescence is associated with better outcomes. Our aim was to create a transition of care program for youth in our diabetes clinic following the Got Transition Core Elements and assess its effectiveness. First, we established a clinic transition policy and corresponding informational letter, which we distributed to youth ages 12-16. Then, we adopted a Diabetes Summary Form to track and monitor transition progress. Next, we implemented transition readiness screening to youth ages 14-16 using the Readiness Assessment of Emerging Adults with Diabetes Diagnosed in Youth (READDY) tool. Last, we distributed GotTransition.org surveys to youth and their caregivers to assess satisfaction with our clinic’s transition process and perceived readiness to move to an adult provider. The transition letter distribution rate had a mean of 56% and the READDY completion rate had a mean of 40%. Although we did not achieve our distribution target goal of 80%, 90% of those who did complete the READDY indicated they were somewhat or very ready to transition to adult care. The satisfaction survey revealed that many youths still need assistance with insurance (32%) and finding an adult provider (45%). Overall, our initial efforts to establish a healthcare transition program were successful. We will continue our work on 1) improving letter distribution and readiness screening rates, 2) designing a curriculum centered around adolescent-specific issues, including insurance needs and 3) increasing our connections with adult endocrinologists to facilitate seamless transitions. We hope other pediatric diabetes clinics can learn from our experience, as well expanding to other subspecialty clinics in our children’s hospital. Presentation: Friday, June 16, 2023

The impact of a health care transition clinic on spina bifida condition management and transition planning

BackgroundTo better serve the growing population of individuals with spina bifida (SB) living into adulthood, pediatric SB clinics have developed structured health care transition (HCT) supports for adolescents and young adults. Evaluating the impact of structured HCT on SB-related chronic condition outcomes and transition planning goals is needed to assess such interventions. ObjectiveThis study explored the impact of a SB HCT Clinic on SB-related chronic condition management outcomes (e.g., reported bowel and bladder regimens and presence of pressure injury) and transition planning goals (e.g., decision-making, insurance, and transportation). MethodsA retrospective chart review was conducted of young adults with SB who did and did not participate in an SB HCT Clinic before establishing an adult clinic to compare SB-condition outcomes and HCT planning goals between groups. Associations between demographic and clinical variables and outcomes were also assessed. ResultsThe HCT group (n = 68) was more likely to use a bowel regimen (P < 0.01) compared to the non-HCT group (n = 94). There were no differences regarding bladder regimens or incidence of pressure injuries. For HCT planning, the groups differed regarding decision-making supports (P = 0.01). Additionally, the HCT group was more likely to use self-transportation (P = 0.01) or Medicaid transportation (P < 0.01). ConclusionThis single-center HCT program improved the use of a bowel regimen at the time of transfer to adult care and impacted HCT planning regarding decision-making and transportation. These initial findings support the need for further development and assessment of HCT programs for this population.

1041-P: Health Care Transition Practices in the T1D Exchange Quality Improvement Collaborative

Background: Implementation of a structured health care transition (HCT) process is associated with positive outcomes in population health, experience of care, and health care utilization. Objective: To describe pediatric and adult clinic HCT practices in the T1D Exchange Quality Improvement Collaborative (T1DX-QI). Methods: Got Transition’s Six Core Elements of HCT offer a structured approach to the phases of transition support: 1) transition and care policy, 2) tracking and monitoring, 3) transition readiness, 4) transition planning, 5) transfer of care, and 6) transfer completion. T1DX-QI institutions (n=53) were surveyed to examine the integration of the Six Core Elements into diabetes HCT practices. Results: The survey response rate was 94.3% (n=50 clinics; 33 pediatric, 17 adult). A majority of T1DX-QI pediatric clinics (72.7%, n=24) report having a HCT policy compared to 29.4% (n=5) of adult clinics. Among pediatric institutions, 45.4% (n=15) maintain a tracking system to identify transition-aged youth, 39.4% (n=13) formally assess HCT readiness, 52% (n=17) document and update a plan of care for transition and 27.3% (n=9) have a process in place to confirm successful transfer of care completion with adult diabetes providers. Approximately two-thirds of T1DX-QI pediatric institutions (63.6%, n=21) have a formal structured HCT program and 29% (n=6) of these HCT programs report incorporating all 6 elements. Conclusions: Data from T1DX-QI centers highlight opportunities to further enhance transition preparation and receivership for emerging adults with type 1 diabetes. The Six Core Elements offer a potential avenue to structure improvement initiatives since many diabetes clinics only partially incorporate these elements in current practice. Partnerships between pediatric and adult diabetes centers should be considered as part of quality improvement efforts to facilitate incorporation of challenging HCT elements such as transfer of care completion. Disclosure F.Malik: None. G.T.Alonso: None. O.Ebekozien: Advisory Panel; Medtronic, Research Support; Eli Lilly and Company, Dexcom, Inc. S.Corathers: None. T1dx-qi collaborative: n/a. J.Cases-villablanca: None. M.E.Hilliard: None. S.Lyons: None. L.M.Jacobsen: None. A.J.Roberts: None. A.Mucci: None. S.Agarwal: Advisory Panel; Medtronic, Consultant; Beta Bionics, Inc., Research Support; Abbott Diabetes, Dexcom, Inc. C.Demeterco-berggren: Speaker's Bureau; Glooko, Inc. Funding The Leona M. and Harry B. Helmsley Charitable Trust

Current approach to health care transition and integration into adult care for pediatric liver transplant recipients: A call for partnership.

Despite the increased risk of non-adherence, allograft rejection, and mortality following transfer from pediatric to adult care in liver transplantation (LT), there is no standardized approach to health care transition (HCT). Two electronic national surveys were developed and distributed to members of the Society for Pediatric Liver Transplantation and all adult LT programs in the United States to examine current HCT practices. Responses were received from 40 pediatric and 79 adult centers. Pediatric centers were more likely to focus on HCT noting the presence of a transition/transfer policy (60.2%vs. 39.2%), transition clinic (51.6%vs. 16.5%), and the routine use of transition readiness assessment tools (54.8%vs. 10.2%). Perceived barriers to HCT were similar among pediatric and adult respondents and included patient willingness to transfer and participate in care, failure to show for appointments, and lack of sufficient time and staffing. These results highlight the need for an increased awareness of HCT at both pediatric and adult LT centers. The path to improvement requires a partnership between pediatric and adult providers. Recognizing the importance of a comprehensive HCT program initiated in pediatrics and continued throughout young adulthood with ongoing support by the adult team is essential.

Optimizing transition from pediatric to adult care in short bowel syndrome and intestinal failure.

As the majority of children with short bowel syndrome (SBS) and intestinal failure (IF) are now surviving into adulthood, there is a paradigm shift from short-term management to long-term outcomes and a growing need to focus on healthcare transition (HCT). It is imperative that adolescents and young adults with SBS and IF receive disease education, empowerment, and support as they navigate the transition from pediatric to adult care. Furthermore, both pediatric and adult healthcare providers who manage these patients should be aware of the challenges faced by this population, barriers to their HCT, and strategies to overcome them. This article reviews the literature on HCT in children with chronic illnesses, discusses barriers to HCT in SBS/IF, identifies the important constituents of the transition process in SBS/IF, and provides recommendations for the successful and smooth transition of the pediatric patient to the adult healthcare environment. Structured and multicomponent HCT programs should become the standard of care to ensure uninterrupted high-quality care across the life span for patients with SBS/IF.

Development of a transition program for pediatric patients with renal disease

BackgroundThe transition from pediatric to adult health care is challenging for patients with renal disease and inadequate transition can lead to increased disease-related morbidity. We developed a structured health care transition (HCT) program that includes a joint two-step transition clinic; the first step is the pediatric clinic and second step is the adult clinic. MethodsQuality improvement methodology was utilized to establish an interdisciplinary transition team and conduct a needs assessment. Lack of a standardized HCT program was identified as a primary barrier to HCT. We utilized transition team and other stakeholder input to implement a transition program that included a joint pediatric/adult two-step transition clinic. Various other components were developed, including a transition policy and patient and provider feedback surveys. A pilot group of patients with kidney disease participated in the program. Results27 patients completed the “first step” and 22 patients completed the “second step” of the transition clinic. Median age at the time of transition was 20 years, with kidney transplant (41 %) as the major diagnosis. All patients (100 %) received the transition policy and reported that the transition team worked with them to gain skills to manage their health and plan for the future. Pediatric and adult nephrologists reported feeling satisfied (100 %) with the transition program. ConclusionA structured transition program was established utilizing expertise of a dedicated transition team and was well received by participants. This program is a critical first step in addressing the gap in standardized care for transition for pediatric patients with kidney disease.

Transition of Kidney Care at 18: Challenges and Practical Solutions for India.

Health-care transition (HCT) from pediatric-centered to adult-oriented health-care setting is more than a simple transfer of care. It is a carefully planned movement specially tailored for the needs of adolescents and young adults (AYAs). Similar to other chronic diseases, the need for HCT for AYAs with kidney disease has been well established by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA) consensus statements since 2011. However, successful HCT in India and other low- and middle-income countries (LMICs) has been limited. Undertaking the HCT program in India requires involvement of many stakeholders, that is, AYAs, parents/caregivers, health-care providers, and the health-care system. In this article, we discuss the need for HCT, the challenges faced during the transition, and the recommended models for HCT in kidney care. We focus on the unique challenges faced in India and conclude with practical suggestions to implement HCT in our setting.

Efficacy of Interventions to Build Transition Readiness for Youth with Sickle Cell Disease: A 13-Year Evaluation of a Healthcare Transition Program

Background Progress in pediatric care has improved survival into adulthood for children with sickle cell disease (SCD); however, mortality and acute care utilization rise among emerging adults. With unmet needs to improve health outcomes in young adults, SCD effective transition programs that transfer care from pediatric to adult providers are needed. Since 2007, the St. Jude Children's Research Hospital (SJCRH) SCD Transition to Adult care Program has served patients between 12-25 years of age by providing transition readiness-building activities, including in-person and online SCD education, experiential learning, academic planning, and introduction to adult providers at age 17 years. We tested the efficacy of individual components of the SJCRH Transition Program in ensuring optimal post-pediatric transition outcomes. Methods We retrospectively reviewed all patients with SCD treated at SJCRH who would have reached age 18 years between 2007 and 2020. Of the 722 patients, 142 (19.7%) died, relocated, or were lost to follow up before age 18 years and were excluded from the analysis. The association between pediatric transition intervention components and the following transition outcomes: 1) adult care transfer completion <6 months from completing pediatric care, 2) frequency of adult outpatient visits, 3) adult acute care utilization [emergency room (ER) and hospitalizations], and 4) quality of life (QoL) PedsQL™ SCDModule scores at ages 18 or 24 years was investigated using Wilcoxon rank sum, Fisher's exact, Spearman correlation (with spearman correlation coefficient ρ), or Kruskal Wallis tests. Analyses were adjusted for multiple comparisons to control for false discovery rate and q-value was calculated. Results Of the 580 pediatric patients who received transition services to age 18, 476 (82.1%) completed adult transfer of care. There was no difference in completion of a first adult visit relative to SCD genotype or sex, but longer exposure duration to any SCD-modifying therapy was associated with higher rate of adult care transfer completion (Table 1). Patients who successfully transferred to adult care had significantly higher participation in all components of the transition program and higher transition readiness scores (Table 1). Frequency of pediatric outpatient visits was not associated with completion of a first adult visit. However, patients with a transfer gap <6 months had higher frequency of pediatric visits than those with ≥6 months gap (median 77 vs 27 visits/patient, respectively, q<0.00001). Patients with HbSS/SB0-thalassemia attended more adult outpatient visits compared to those with HbSC/SB+thalassemia genotypes (median 62 vs 27 total visits/patient, q<0.0001). Longer exposure to any SCD-modifying therapy (ρ=0.44, q<0.00001), higher frequency of pediatric outpatient visits (ρ=0.61, q <0.00001), and adult provider introduction at 17 years (q=0.025) were associated with greater attendance to adult outpatient visits. Longer exposure to SCD-modifying therapies (ρ=0.26, q<0.0001) was associated with higher adult acute care utilization, while no association was observed with SCD genotype and adult acute care utilization. Higher frequency of academic planning (ρ=-0.23, q=0.0002) and disease education sessions (ρ=-0.28, q<0.0001, Fig 1) were negatively correlated with adult acute care utilization. QoL was lower among females than males (median q=0.002), but no differences were observed relative to SCD genotypes or duration of exposure to SCD therapies. The frequency of SCD education (ρ=0.19, q=0.008) and training on personal health history reporting (ρ=0.22, q=0.004) were positively correlated with QoL. More self-reported internalizing problems due to anxiety and depression (BASC-ESI scores) did not predict adult transfer completion but were associated with lower QoL in young adulthood (ρ=-0.32, q=0.008). Conclusion The transition program at SJRCH was effective in placing 82% of patients in adult care. Demographic factors (sex, SCD genotype) were not always predictive of transition outcomes. However, our results suggest transition interventions designed to increase transition readiness may promote improved transition outcomes. Future analyses will focus on building multivariable models to determine the optimal combination of transition interventions to improve transition outcomes in SCD. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

Prevalence and barriers to health care transition for adolescent patients with childhood-onset chronic diseases across Japan: A nation-wide cross-sectional survey.

Since the Japan Pediatric Society published its “Recommendations on Transitional Care for Patients with Childhood-Onset Chronic Diseases” in 2014, there has been an increased interest in the health care transition of adolescents with childhood-onset chronic diseases in Japan. However, the actual status of healthcare transition was not studied yet. The purpose of this study was to explore the prevalence of transitional support for adolescent patients with childhood-onset chronic disease and the factors hindering their transition. We conducted an anonymous questionnaire survey in August 2020, targeting physicians and nurses involved in health care transition at 494 pediatric facilities in Japan. Survey items included demographic data, health care systems related to transition to adult departments, health care transition programs based on Six Core Elements (establishing transition policy, tracking and monitoring transition progress, assessing patient readiness for transition, developing the transition plan with a medical summary, transferring the patient, completing the transfer/following up with the patient and family), barriers to transition (34-item, 4-point Likert scale), and expectations in supporting transition (multiple-choice responses), which consisted of five items (78 questions); all questions were structured. Descriptive statistics were used for analysis. Of the 225 responses collected (45.5% response rate), 88.0% were from pediatricians. More than 80% of respondents transferred patients of 20 years or older, but only about 15% had took a structured transition process of four or more based on the Six Core Elements. The top transition barriers were “intellectual disability/rare disease” and “dependence on pediatrics” as patient/family factors, and “lack of collaboration with adult healthcare (relationship, manpower/system, knowledge/understanding)” as medical/infrastructure factors. The study provides future considerations, including the promotion of structured health care transition programs, development of transitional support tailored to the characteristics of rare diseases and disorders, and establishment of a support system with adult departments.

Transition program: Initial implementation with adults with neuromuscular conditions

PurposeTo identify current medical and psychosocial needs and to examine the effectiveness of healthcare transition program for adult-aged patients with neuromuscular conditions transitioning from pediatric to adult services. Design and methodsAt Neuromuscular Transition Clinic visit, 46 patients were evaluated and referred to adult-based providers, if did not currently have one, from an acquired list of interested clinicians. At mean follow-up of 22 months, 42 were interviewed by phone regarding referrals for Core Services (primary care, physiatry, dental care and gynecology), Medical Specialties and Rehabilitation Services. Mean age was 30 years with 62% males. Majority (74%) had cerebral palsy. Sixty percent were non-ambulatory. ResultsAs per protocol, all were indicated to need Core Services. Eighty-three percent already had adult primary care provider. Most referrals were given for physiatry (62%), vocational training (100%), and occupational therapy (88%). At follow-up, visits were completed most frequently with adult provider for primary care (100%), occupational therapy (78%), and neurology (75%). Referred provider was seen 100% for physiatry, neurology, physical therapy, occupational therapy and vocational training. Of the total 125 referrals given across all services, 73 (58%) participants had completed a visit with an adult provider. ConclusionsAs only about 60% transitioned to adult-based services after referral, healthcare transition remains challenging and requires tailoring of services according to patients' needs, staff and willing-and-available adult-based providers. Practice implicationsTransitioning healthcare of patients with neuromuscular conditions from pediatric- to adult-based providers remains challenging. This clinical specialty requires tailoring of services based on patient's needs, and availability of adult-based providers and resources.

Improved health care transition for young adults with developmental disabilities referred from designated transition clinics

PurposeYoung adults with intellectual/developmental disabilities (YAIDD) are a vulnerable population during HCT due to their complex care coordination and adaptive needs, yet factors associated with transition preparedness are not well defined. We aimed to determine factors associated with health care transition (HCT) preparation satisfaction for YAIDD establishing care with an adult medical home. Design and methods408 YAIDD or their families completed the HCT Feedback Survey 2.0 upon establishing adult care. Logistic regression models were used to determine associations between a composite of six HCT Feedback Survey questions that most correlated with the 2019 National Survey of Children's Health transition questions. ResultsYADD who had HCT preparation visits with a designated HCT clinic were 9 times more likely to have met all six composite HCT criteria after controlling for the number of technologies required and race/ethnicity (adj OR 9.04, 95% CI: 4.35, 18.76) compared to those referred from the community. Compared to patients who were referred from the community, the odds of feeling very prepared versus somewhat or not prepared were 3.7 times higher (adj OR 3.73, 95% CI: 1.90, 7.32) among patients referred from a designated HCT program. ConclusionsYAIDD who participated in a structured HCT program prior to transfer to adult care experienced higher transition preparation satisfaction. Practical implicationsA structured HCT clinic model to prepare adolescents with DD for transition to adult care may improve HCT preparation satisfaction for this population.

Health Care Transition for Adolescents and Young Adults With Pediatric-Onset Liver Disease and Transplantation: A Position Paper by the North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition.

Advances in medical therapies and liver transplantation have resulted in a greater number of pediatric patients reaching young adulthood. However, there is an increased risk for medical complications and morbidity surrounding transfer from pediatric to adult hepatology and transplant services. Health care transition (HCT) is the process of moving from a child/family-centered model of care to an adult or patient-centered model of health care. Successful HCT requires a partnership between pediatric and adult providers across all disciplines resulting in a transition process that does not end at the time of transfer but continues throughout early adulthood. Joint consensus guidelines in collaboration with the American Society of Transplantation are presented to facilitate the adoption of a structured, multidisciplinary approach to transition planning utilizing The Six Core Elements of Health Care Transition TM for use by both pediatric and adult specialists. This paper provides guidance and seeks support for the implementation of an HCT program which spans across both pediatric and adult hepatology and transplant centers.

Health care transition planning: A potpourri of perspectives from nurses.

Nurses have important roles as members of the healthcare transition (HCT) planning interdisciplinary team. Nursing's scope of practice and framework of care brings a distinctive and complementary approach to this expanding field in pediatric care. It is therefore relevant to better understand the extent to which pediatric nurses are involved with the provision of HCT services and model development. This was a qualitative analysis of a national survey of pediatric nurses. A thematic iterative process was used to code data. Three coders separately analyzed responses and then met to compare and discuss until a final list of codes was achieved. The codes were further analyzed until themes and subthemes emerged. Throughout the process, disagreements were discussed and resolved until consensus was achieved. A sample of 1814 pediatric nurses and nurse practitioners from two US professional organizations participated in this national survey to gather data on their involvement in HCT planning. This survey contained 17 items, one of which was an open-ended question stating: Is there anything else you would like to share about your role with the population of transitioning youth and young adults with chronic illness and/or disability? The analysis of responses provided by 154 nurses is presented. Initial coding resulted in 11 categories of data. Four major themes, including four subthemes, emerged from the analysis of responses: Support for the need for transition (subtheme: Nursing involvement); Guidance needed for professional practice (subtheme: Types of guidelines and training); Lack of service linkages to adult providers; and Difficulty letting go (two subthemes: Pediatric providers; Parents). These findings indicated strong support for the need of HCT services and the importance of nursing involvement. However, challenges to HCT implementation were identified that include systemic, psychosocial, and educational barriers. As this field of practice and research continues to grow, it is important that pediatric nurses recognize the opportunities to have a clinical voice to develop nurse-led HCT services and programs.

Transition from Pediatric to Adult Care of Pediatric Patients with Chronic Disease: Experiences and Perspectives of Pediatricians and Internists at a Private Tertiary Hospital in the Philippines

The improving survival rates and life expectancy of patients with pediatric-onset chronic diseases led to a rise in the number of individuals requiring transition to adult care. A successful Health Care Transition (HCT) is vital in ensuring therapy adherence, continuity of care, and positive health outcomes. Both pediatricians and internists are key stakeholders in the transition process and have equally valuable input in improving HCT policies and programs.

Transfer of Care for People with Severe Forms of Thalassemia: Learning from Past Experiences to Create a Transition Plan

PurposeTo demonstrate the need for developing standardized healthcare transition plans for persons with severe forms of thalassemia as life expectancy continues to improve. Design and methodsThis study utilized an original questionnaire to explore the factors that determined whether individuals residing in North America transferred their thalassemia care from a pediatric to an adult specialist, and what components they believed should be included in a healthcare transition plan. ResultsApproximately one-third of respondents remained under the care of a pediatric hematologist, most commonly citing the thalassemia knowledge of the specialist as their reason for not transferring their care. Additionally, this group also reported more thalassemia-related services available at their healthcare facility, better access to flexible hours for blood transfusions and increased satisfaction with their care. Adults with thalassemia recommend enhanced communication between patient and provider and building opportunities for patients to assume the role of self advocate as key components for a healthcare transition plan. ConclusionsThere is an inconsistency in the transfer-of-care experience of adults with severe forms of thalassemia living in North America. Development of a healthcare transition program would benefit from the input of those who have gone through this process. Practice implicationsA well informed healthcare transition program can enhance the quality of life of those with thalassemia. The training and educational background of nurses and genetic counselors make them uniquely qualified to guide patients on how to advocate for themselves and to ensure continuity of care during a healthcare transition.

Provider Perspectives of Necessary Factors in Sickle Cell Disease Health Care Transition: Results from an Online Survey

Introduction: Survivorship of children with sickle cell disease (SCD) has substantially increased due to the advent of medical advances, such as sepsis prevention (prophylactic penicillin) and exposure to disease-modifying therapies (chronic transfusion and hydroxyurea). Despite greater longevity in SCD, the period surrounding the transition from pediatric to adult care has the highest prevalence of undesirable outcomes: youth aged 18-30 years are at high risk for mortality and high rates of healthcare utilization, resulting in increased healthcare costs. As such, health care transition programs have been created to prepare patients with SCD for adult-centered care and subsequently, improve health outcomes. However, few programs have been evaluated for effectiveness in achieving optimal health outcomes in SCD in part because of a lack of identifiable predictors and outcomes.Objective: To identify factors necessary for successful health care transition, as judged by pediatric and adult healthcare professionals involved with the SCD population.Method: Individuals who provide clinical care for or conduct clinical research with patients with SCD were eligible to participate in the survey and were collectively defined as providers. Providers were recruited online through nationally recognized professional societies, SCD provider contact lists and in person at a national SCD conference. Links to an online survey, administered via Qualtrics software, were distributed to potential participants. The survey included demographic questions and a list of 36 transition factors, including disease knowledge, self-management behaviors, and independent living skills. Participants were asked to rate the level of importance of each factor in helping a patient with SCD successfully transition from pediatric to adult care on a scale from 1 (not important) to 10 (very important). They were then asked to select five of the 36 factors they believed were most necessary for a successful transition, ranking them from 1 (highest) to 5 (lowest). Descriptive statistics were conducted to determine the top ratings and rankings. A two-way MANOVA was conducted to examine whether the top ratings were different according to provider gender and occupation.Results: The sample included 258 providers (74% female, 65% White). The majority were hematologists (41%); 38% were other medical staff (e.g., nurse, midlevel providers, other physicians) and 21% were non-medical staff (e.g., psychologist, social worker, researchers). The transition factor ratings (scale 1 to 10) ranged from 5.82-9.62 (M=8.05, SD=1.74). The factors with the highest ratings included: Knows how to take medications (M=9.62, SD=0.82), Explains/communicates medical needs to medical personnel (M=9.50, SD=0.93), Knows when to seek medical assistance if home management fails (M=9.32, SD=1.12), and Knows how to manage pain episodes (M=9.31, SD=1.18). These same four factors also were ranked as the top five most relevant factors: Knows how to manage pain episodes (N=138, 53%, M=2.59, SD=1.30), Explains/communicates medical needs to medical personnel (N=115, 45%, M=2.54, SD=1.38), Knows how to take medications (N=135, 52%, M=2.67, SD=1.31), Knows when to seek medical assistance if home management fails (N=102, 40%, M=2.97, SD=1.46). Knows medical history (N=100, 39%, M=2.57, SD=1.35) was the fifth most relevant factor. Multivariate results indicated a trend toward hematologists giving lower ratings compared to other medical and non-medical professionals, F (8, 486) = 1.91, p = .057.Conclusions: Our findings reveal the importance of attainment of disease knowledge and self-management skills for optimal transition from pediatric to adult care. Interventions and programming designed to prepare adolescents for transition should target these areas. Furthermore, disease knowledge and self-management skills may be meaningful predictors when evaluating transition outcomes and the effectiveness of transition programs during and after the health care transition process. Our data also indicated differences in provider ratings by profession, demonstrating the value of incorporating a variety of perspectives in assessing transitioning needs. Such efforts are essential to improve health outcomes and quality of care for patients with SCD transitioning to adult care. DisclosuresPorter:NHLBI: Research Funding.

Healthcare Transition Preparation in X-Linked Hypophosphatemia

Abstract Introduction/Background: X-linked-dominant hypophosphatemia (XLH), formally known as vitamin-D-resistant rickets, is a rare, hereditary, chronic and progressive skeletal disorder, often perceived as a childhood disease only. Its estimated prevalence is 1 in 20,000. The perception that XLH does not require treatment once the growth plates fuse means that many adolescents/young adults (AYA) are lost to follow-up and then seek care for chronic musculoskeletal symptoms, including the consequences of osteomalacia (bone pain, pseudofractures, fractures) during adulthood. There is a need to improve the healthcare transition (HCT) preparation for AYA with XLH and other rare metabolic bone disorders (MBD) to facilitate consistent and effective care throughout the life span and lessen the psychosocial and economic burden associated with these disorders. Methods/Statement of the Problem: HCT timelines, milestones, and educational tools exist for some chronic conditions such as diabetes or kidney disease, but these programs do not meet the unique needs and nuances of patients with XLH and other rare MBD as they transfer to adult-focused healthcare. Consequently, specific tools and resources tailored by disease experts for these AYA are needed. Results/Proposed Solution: Detailed timelines with milestones and a description of a HCT program for AYA with XLH and other rare MBD have been adapted from best practice protocols. This program reflects the specific needs of, and complexities associated with these conditions. Furthermore, this approach describes how to facilitate better communication between adult- and pediatric-focused providers and their interdisciplinary teams. Our approach is guided by patient/caregiver input and existing models for research/clinical care, with the use of validated tools to measure HCT readiness. We identified the need for psychosocial and access-related resources for AYA emancipation from parental involvement, including a guidance document for parents on how to empower their child to take ownership of the disease as they grow. In addition, it is helpful to provide disease education, genetic counselling and guidance on family planning, to encourage patients to advocate for their healthcare (as access to specialists may be limited by geographical location), and to facilitate communication/education to patients through channels familiar to and accepted by AYA (e.g. online portals, text messages). Clear HCT preparation guidelines and treatment-related goals are defined for all stakeholders. A portfolio of supporting materials underpins optimization of outcomes as AYA with XLH and rare MBD transfer from pediatric- to adult-focused healthcare. Conclusion: Development of HCT tools/resources specific to XLH and other rare MBDs can help prevent loss to follow-up and promote continuous clinical care, thus driving better outcomes for AYA with these conditions.