A “Good” Fontan Circulation at Transition to Adult Care: Late Clinical Outcomes and Risk for Systolic Ventricular Dysfunction

ObjectiveA high risk of morbidity and mortality is well documented in adults with a Fontan circulation. The difference in outcomes between those with and without significant morbidity at the time of transition to adult care has not been well characterised.MethodsWe analysed clinical outcomes in patients enrolled in the Australian and New Zealand Fontan Registry ≥16 years of age. Low risk (LR) Fontan patients were defined as those without history of sustained arrhythmia, thromboembolic event, transplantation, Fontan conversion, protein-losing enteropathy, plastic bronchitis, New York Heart Association class III/IV and/or moderate/severe atrioventricular valve regurgitation or ventricular dysfunction. Increased risk (IR) patients had one or more risk factor.ResultsInclusion criteria were met in 822 patients; mean age 26±8 years, median follow-up from age 16 was 9 years, 203 had atriopulmonary connection (APC) and 619 had total cavopulmonary connection (TCPC). Survival at 30 years was higher in the LR versus IR; 94% versus 82% (p=0.005), 89% versus 77% (p=0.07) for APC and 96% versus 89% (p=0.05) for TCPC. LR patients experienced less Fontan failure (HR 0.34, 95% CI 0.23 to 0.49, p<0.001) and ventricular dysfunction (HR 0.46, 95% CI 0.29 to 0.71, p=0.001) compared with IR patients. For LR TCPC patients, modelled survival projections at 60 years were 49%–67%.ConclusionsClinical outcomes for adolescents LR at transition to adult care are markedly superior to those who have established risk factors for Fontan failure, which is an important consideration when formulating individualised long-term risk estimates and counselling patients.

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Adolescent and parent perspectives prior to involvement in a Fontan transition program

International Journal of Adolescent Medicine and Health ◽

10.1515/ijamh-2017-0021 ◽

2017 ◽

Vol 31 (4) ◽

Cited By ~ 1

Author(s):

Karin Du Plessis ◽

Evelyn Culnane ◽

Rebecca Peters ◽

Yves d’Udekem

Keyword(s):

Help Seeking ◽

Health Knowledge ◽

Transition Program ◽

Palliative Surgery ◽

Fontan Circulation ◽

Transition To Adult Care ◽

Emotional Wellbeing ◽

Adult Care ◽

Poor Knowledge ◽

Transition Clinic

Abstract Background Successful transition to adult healthcare is particularly important for congenital heart disease (CHD) patients who have undergone palliative surgery, as they risk adverse events if not followed closely. This study examines young people at the worst end of the CHD spectrum who are born with a single ventricle (pumping heart chamber), and who undergo a series of operations that culminate in the Fontan surgical procedure. Purpose To explore adolescents with a Fontan circulation, and their parents’, readiness for transition to adult care and pre-implementation of a transition program. Methods Seventeen adolescents (15–18 years) and 15 of their parents completed questionnaires at the start of their first transition clinic. Results Adolescents reported poor knowledge about their Fontan circulation, and 41% had a poor understanding of the purpose of their medications/treatments. Over half of the adolescents had poor knowledge around medical help-seeking (when, who, how). Most reported feeling comfortable with discussing their medical issues with their cardiologist, but considerably less so about sensitive adolescent issues, in particular, emotional wellbeing. Parents reported high levels of anxiety around transition to adult care services. Conclusion Findings pre-program indicate poor adolescent health knowledge, a lack of focus in health services on emotional wellbeing and high parental anxiety. These findings highlight the need for dedicated programs that focus on early preparation, parental involvement and acknowledgment, transition as a process, strong integration and prioritisation in the health system with a youth-friendly and holistic focus, in particular, around emotional wellbeing.

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Traversing the liminal: what can Fontan adults’ transition experiences and perspectives teach us about optimizing healthcare?

International Journal of Adolescent Medicine and Health ◽

10.1515/ijamh-2018-0020 ◽

2018 ◽

Vol 0 (0) ◽

Author(s):

Karin du Plessis ◽

Rebecca Peters ◽

Evelyn Culnane ◽

Yves d’Udekem

Keyword(s):

Health Condition ◽

Fontan Circulation ◽

Patient Perspectives ◽

Support Network ◽

Transition To Adult Care ◽

Adult Care ◽

Health Service Provision ◽

Adult Congenital ◽

Transition Experiences

Abstract Background Successfully transitioning to adult care is important for congenital heart disease (CHD) patients, particularly those at the worst end of the spectrum with a Fontan circulation, as their ongoing health engagement affects their health outcomes. Yet, there is a lack of literature exploring patient perspectives about their transition experiences, and what helps or hinders successful transition to adult care. Methods Young adults with a Fontan circulation (n = 18) from the Australian and New Zealand Fontan Registry participated in in-depth phone interviews. Thematic analyses were used to analyze the qualitative interview data. Results We identified six key themes which stood out from patient experiences, including differences between pediatric and adult congenital cardiac care, the need for preparation through formal transition programs, and the important role of support systems. Conclusion To become active managers of their healthcare and remain engaged with the healthcare system, young people would benefit from coordinated efforts between pediatric and adult care to formally prepare them for transition to adult care. This should include involvement from their support network and ongoing education about their health condition. The study highlights the importance of studying patient perspectives through qualitative research to better inform health service provision in the CHD space.

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O47. Clinical Outcomes of Young Adults with Juvenile Idiopathic Arthritis Following Transition to Adult Care

Rheumatology ◽

10.1093/rheumatology/kev086.005 ◽

2015 ◽

Keyword(s):

Young Adults ◽

Juvenile Idiopathic Arthritis ◽

Clinical Outcomes ◽

Transition To Adult Care ◽

Adult Care

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Pharmacological Considerations When Transitioning the Care of Epilepsy Patients from Pediatric to Adult Epilepsy Centers

Journal of Pediatric Epilepsy ◽

10.1055/s-0040-1716865 ◽

2020 ◽

Vol 09 (04) ◽

pp. 177-185

Author(s):

Natalie Guido-Estrada ◽

Shifteh Sattar

Keyword(s):

Medication Compliance ◽

Lifestyle Changes ◽

Transition To Adult Care ◽

Pediatric Epilepsy ◽

Transition Of Care ◽

Adult Health ◽

Adult Care ◽

Adult Model ◽

Antiepileptic Medications ◽

The Many

AbstractThere is scarce evidence in review of the available literature to support a clear and superior model for the transition of care for epilepsy patients from pediatric to adult centers. Anecdotally, there is a common perception that families are reluctant to make this change and that the successful transition of care for epilepsy can be a challenge for patients, families, and physicians. As part of the effort to prepare the patient and family for the adult model of care, several treatment issues should be addressed. In this article, we discuss the specific challenges for physicians in transition of care for epilepsy patients from a pharmacological standpoint, which include differences in metabolism and pharmacodynamics that can impact tolerability or efficacy of antiepileptic medications, lifestyle changes affecting medication compliance and seizure control, acquired adult health conditions necessitating new medications that may result in adverse drug interactions, and adult neurologists' potential lack of familiarity with certain medications typically used in the pediatric epilepsy population. We offer this as a guide to avoid one of the many possible pitfalls when epilepsy patients transition to adult care.

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Does inflammatory bowel disease have different characteristics according to stage of adolescence?

Therapeutic Advances in Gastroenterology ◽

10.1177/1756284820986670 ◽

2021 ◽

Vol 14 ◽

pp. 175628482098667

Author(s):

Kata Judit Szántó ◽

Tamás Balázs ◽

Dóra Mihonné Schrempf ◽

Klaudia Farkas ◽

Tamás Molnár

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Severe Disease ◽

Transition To Adult Care ◽

Insurance Fund ◽

Late Adolescent ◽

Adult Care ◽

Adolescent Group ◽

Adolescent Patients ◽

Inflammatory Bowel

Background: There is a lack of data about demographic and treatment characteristics of adolescent patients with inflammatory bowel disease (IBD). The aim of this retrospective, epidemiological study was to evaluate characteristics and therapeutic features of Hungarian adolescents with IBD. Methods: We analysed the social security databases of the National Health Insurance Fund. Adolescent patients with IBD for whom data from 2009 to 2016 were observable in the database were enrolled. Patients aged 14 to 17 years and 18 to 21 years were defined as middle and late adolescent patients. Results: The incidences of IBD were 20.12 per 100,000 middle adolescent patients and 29.72 per 100,000 late adolescent patients. Admission to gastroenterology department was higher in both groups compared with admissions to surgery department. Mesalazine was used by a high proportion of Crohn’s disease and ulcerative colitis patients. Rates of corticosteroid use were similar in both groups, with a tendency to decrease over time. The need for biologic agents was higher in the middle adolescent patients. The proportion of patients in the middle adolescent group who received anti-TNF therapy showed an increasing tendency. Conclusion: Our data suggest differences in the treatment strategies of gastroenterologists for these age groups. The greater need of anti-TNF therapy among the middle adolescent group indicates that adolescent patients before the transition to adult care may have a more severe disease phenotype. We expect that a strategy of early, effective treatment will significantly ameliorate the subsequent disease course, which is manifested in adult care.

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Youth Transition to Adult Care and Mental Health Outcomes

AAP Grand Rounds ◽

10.1542/gr.42-6-71 ◽

2019 ◽

Vol 42 (6) ◽

pp. 71-71

Keyword(s):

Mental Health ◽

Health Outcomes ◽

Mental Health Outcomes ◽

Transition To Adult Care ◽

Adult Care ◽

Youth Transition

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The biopsychosocial condition of childhood cancer survivors in the transition towards adult care: a national survey from the joint pediatric and adult transition care group

International Journal of Adolescent Medicine and Health ◽

10.1515/ijamh-2018-0189 ◽

2018 ◽

Vol 0 (0) ◽

Author(s):

Giulia Zucchetti ◽

Simona Bellini ◽

Marina Bertolotti ◽

Eleonora Biasin ◽

Enrico Brignardello ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Childhood Cancer Survivors ◽

Adolescent And Young Adult ◽

Transition To Adult Care ◽

Care Group ◽

Adult Care ◽

Care Plans ◽

Health Domains ◽

The Moment

AbstractBackgroundTo provide successful transfer from childhood to adult-oriented healthcare is one of the priorities of survivorship care plans.PurposeThis study describes adolescent and young adult childhood cancer survivors’ conditions at the moment of the transition to adult care deepening their biological, psychological, social and assistant state and their associations with socio-demographic and clinical characteristics.MethodsA biopsychosocial check-list in four health domains (biological, psychological, social and assistant) was filled in by healthcare professionals (oncologists, psychologists, social workers and nurses) through qualitative interviews and clinical observations of 79 survivors (58% boys; Mage= 20 years old) at the moment of the transition from the Pediatric Oncology Unit to the Transition Unit of the Childhood Cancer Survivors.ResultsAt the moment of transition, 38% of survivors showed a positive condition in all the four health domains without any kind of impairment. Biological (37%) and psychological areas (44%) were found to be those with major incidence of impairments. Association phenomena were found between psychological and social condition (p < 0.05) and between social and assistant condition (p < 0.05). Biological condition was also significantly associated with the type of cancer (χ = 6,2414, p < 0.05).ConclusionAlthough many survivors entered in adult care system without any impairment, the biopsychosocial approach highlighted that there is a presence of impairments in at least one of the main health domains.

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