Perceptions of Transitional Care Needs and Experiences in Pediatric Heart Transplant Recipients

Anthony, Samantha J.; Kaufman, Miriam; Drabble, Alison; Seifert-Hansen, Mirna; Dipchand, Anne I.; Martin, Kathy

doi:10.1111/j.1600-6143.2009.02654.x

Cited by 10 publications

(6 citation statements)

References 19 publications

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“…Greater attention to transition of care has therefore become essential. Transfer of care is an event; it is the purposeful, planned movement of a patient from pediatric to adult healthcare facilities (5). Transition of care is ''an active process that addresses the medical, psychosocial, and educational/vocational needs of adolescents as they prepare to move from child-to adult-centered health care (4).''…”

Section: What Is Newmentioning

confidence: 99%

Adherence, Medical Outcomes, and Health Care Costs in Adolescents/Young Adults Following Pediatric Liver Transplantation

Lawrence

Martínez

Lobritto

et al. 2020

J. pediatr. gastroenterol. nutr.

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Objective: Improved outcomes after pediatric liver transplantation (LT) have led to increasing numbers of adolescent and young adult recipients entering into adult health care systems. The aim of this study was to evaluate the impact of transition from pediatric to adult health care models on medical outcomes, measures of adherence, and health care utilization for pediatric LT recipients. Methods: We evaluated the course of patients who received an LT while followed in pediatrics and transferred to an adult care provider within our institution. Data were collected from 2 years preceding and 2 years following transfer of care. Results: A total of 32 patients were eligible for analysis. Median age at time of transfer was 22.9 years (interquartile range 21.7–23.6). Nine patients (28%) died following transfer of care. There was a significant decrease in office visit adherence following transfer of care (P = 0.02). Although not achieving significance, an increase in alanine aminotransferase values, episodes of acute cellular rejection, progression to cirrhosis, evolution to chronic rejection, and hospital admission rates post transfer were found. These findings were associated with an increase in health care costs related to required interventions. Conclusions: Our study demonstrates trends toward worse health outcomes, decreased adherence, and increased health care utilization following transfer of care. These findings and poor patient survival suggest that the time around transition from pediatric to adult health care models represents a period of increased vulnerability for pediatric LT recipients. Larger, multicenter, prospective studies are needed to identify factors and interventions that affect adolescent and young adult to improve the transition process.

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Section: What Is Newmentioning

confidence: 99%

Adherence, Medical Outcomes, and Health Care Costs in Adolescents/Young Adults Following Pediatric Liver Transplantation

Lawrence

Martínez

Lobritto

et al. 2020

J. pediatr. gastroenterol. nutr.

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“…A strong partnership with regards to recommended testing and treatment for adolescents will instill a smoother transition process and lead to less apprehension of the adult transplant team. 47 Overall, there are limited data evaluating novel immunosuppression regimens in pediatric patients and CNIs remain at the forefront of treatment beginning immediately post-transplant. 43 Our study suggests that emerging adult HT recipients on CNI-free regimens at the time of transition have an increased risk of mortality.…”

Section: Rejection and Graft Failurementioning

confidence: 99%

Long‐term outcomes for pediatric heart transplant recipients transitioning to adult care teams

Donald,

Oren,

DeFilippis

et al. 2024

Clinical Transplantation

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BackgroundThere are limited data evaluating the success of a structured transition plan specifically for pediatric heart transplant (HT) recipients following their transfer of care to an adult specialist. We sought to identify risk factors for poor adherence, graft failure, and mortality following the transfer of care to adult HT care teams.MethodsWe retrospectively reviewed all patients who underwent transition from the pediatric to adult HT program at our center between January 2011 and June 2021. Demographic characteristics, comorbid conditions, and psychosocial history were collected at the time of HT, the time of transition, and the most recent follow‐up. Adverse events including mortality, graft rejection, infection, and renal function were also captured before and after the transition.ResultsSeventy‐two patients were identified (54.1% male, 54.2% Caucasian). Mean age at the time of transition was 23 years after a median of 11.6 years in the pediatric program. The use of calcineurin inhibitors was associated with reduced mortality (HR .04, 95% CI .0–.6, p = .015), while prior psychiatric hospitalization (HR 45.3, 95% CI, 6.144–333.9, p = .0001) was associated with increased mortality following transition. Medication nonadherence and young age at the time of transition were markers for high‐risk individuals prior to the transition of care.ConclusionsTransition of HT recipients from a pediatric program to an adult program occurs during a vulnerable time of emerging adulthood, and we have identified risk factors for mortality following transition. Development of a formalized transition plan with a large multidisciplinary team with focused attention on high‐risk patients, including those with psychiatric comorbidities, may favorably influence outcomes.

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“…9,14 Directly involving adolescents' priorities and needs into transitional care programs has been shown to substantially increase both adolescent and parent satisfaction on many aspects of care. [15][16][17][18] In adult populations, satisfaction is directly associated with symptom improvement and increased adherence to therapy. [19][20][21] Patient satisfaction measures for transitional care have been established and should be used to gain valuable insight from adolescents and parents to develop patient-centered transitional strategies.…”

Section: Introductionmentioning

confidence: 99%

“…Directly involving adolescents' priorities and needs into transitional care programs has been shown to substantially increase both adolescent and parent satisfaction on many aspects of care 15–18 . In adult populations, satisfaction is directly associated with symptom improvement and increased adherence to therapy 19–21 .…”

Section: Introductionmentioning

confidence: 99%

Mind the Gap

Dushnicky¹,

Fine²,

Cellucci

et al. 2023

J Clin Rheumatol

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Background The transition from pediatric to adult care is a critical time when adolescent patients and their families face many challenges. This period can be associated with an increase in disease-related morbidity and mortality. The aim of our study is to identify gaps in transition-related care to help guide areas for improvement. Methods Patients (14–19 years) with juvenile idiopathic arthritis or systemic lupus erythematosus and one of their parents were recruited from the McMaster Rheumatology Transition Clinic. Both were asked to complete the Mind the Gap questionnaire, a validated tool to assess experience and satisfaction with transition care in a clinic setting. The questionnaire, addressing 3 important domains of care: management of the environment, provider characteristics, and process issues, was completed twice—once based on their current clinical experience and again based on their ideal clinical encounter. Positive scores suggest current care is less than ideal; negative scores suggest current care exceeds the ideal experience Results Most patients (n = 65, 68% female) had a diagnosis of juvenile idiopathic arthritis (87%). Patients identified mean gap scores between 0.2 and 0.3 for each domain of Mind the Gap, with female patients having higher gap scores compared with male patients. Parents (n = 51) identified gap scores between 0.0 and 0.3. Patients identified process issues as having the largest gap, whereas parents identified management of the environment as having the largest gap. Conclusions We identified several gaps in transition clinic care relative to what patients and parents identify as ideal. These can be used to improve the rheumatology transition care that is currently being provided.

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Perceptions of Transitional Care Needs and Experiences in Pediatric Heart Transplant Recipients

Cited by 10 publications

References 19 publications

Adherence, Medical Outcomes, and Health Care Costs in Adolescents/Young Adults Following Pediatric Liver Transplantation

Adherence, Medical Outcomes, and Health Care Costs in Adolescents/Young Adults Following Pediatric Liver Transplantation

Long‐term outcomes for pediatric heart transplant recipients transitioning to adult care teams

Mind the Gap

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