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

2017 ◽  
Vol 31 (4) ◽  
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.

scholarly journals Knowledge of mental health symptoms and help seeking attitude in a population-based sample in Hong Kong

2021 ◽  
Vol 15 (1) ◽  
Author(s):  
Ada Wai Tung Fung ◽  
Linda Chiu Wa Lam ◽  
Sandra Sau Man Chan ◽  
Sing Lee
Keyword(s):  
Mental Health ◽  
Logistic Regression ◽  
Help Seeking ◽  
Health Knowledge ◽  
Population Based ◽  
Mental Health Symptoms ◽  
Professional Help ◽  
Poor Knowledge ◽  
Health Symptoms ◽  
Mental Health Knowledge

Abstract Background Mental health symptoms can be subtle, resulting in delaying treatment. A prompt identification of mental signs and symptoms is important for preventing mental disorders in the public. This study examined whether local public have adequate knowledge to identify mental health symptoms and the need to get timely professional help. Methods The population-based telephone surveys were conducted in 2015 and 2018. It involved a random sample of 4033 respondents aged 12–75 years. Mental health knowledge and help seeking attitude were assessed using six vignettes depicting subtle and obvious symptoms of anxiety disorders, mixed anxiety and depressive disorders, and dementia. Logistic regression models were performed to examine association between mental health knowledge and help-seeking attitude. Results Individuals with poor knowledge in subtle symptoms were more likely to be males (t =  − 5.0, p < .001), younger (F = 15.0, p < .001), have tertiary education (F = 15.0, p < .001), and employed (t =  − 2.1, p = .037). The knowledge scores of subtle and obvious symptoms were 1.5 and 2.3 respectively. Binary logistic regression found that poor knowledge of subtle symptoms was associated with reluctance to professional help seeking. Conclusions Poorly identified subtle mental health symptoms is a major barrier to early professional help in highly educated working males. Future research should explore specific interventions to increase knowledge and professional help seeking in this group.

Path ahead for ‘low risk’ adolescents living with a Fontan circulation

Heart ◽  
2020 ◽  
pp. heartjnl-2020-317619
Author(s):  
David W Baker ◽  
Mark R Dennis ◽  
Diana Zannino ◽  
Chris Schilling ◽  
Patricia D Moreno ◽  
...  
Keyword(s):  
Clinical Outcomes ◽  
Ventricular Dysfunction ◽  
Fontan Circulation ◽  
Low Risk ◽  
Transition To Adult Care ◽  
Adult Care ◽  
Protein Losing Enteropathy ◽  
Atrioventricular Valve Regurgitation ◽  
Increased Risk ◽  
Fontan Failure

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.

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

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.

scholarly journals Transition to Adult Care in Youth with Epilepsy: One Center's Experience with a Transition Program and Its Integration within Telemedicine

2020 ◽  
Vol 09 (04) ◽  
pp. 119-124
Author(s):  
Gina L. Jones ◽  
Teresa Hickam ◽  
Courtney Wellman ◽  
Ann Modrcin ◽  
Ahmed Abdelmoity ◽  
...  
Keyword(s):  
Kansas City ◽  
Health Resources ◽  
Transition Program ◽  
Transition To Adult Care ◽  
Adult Care ◽  
Practice Model ◽  
Department Of Health ◽  
Early Implementation ◽  
Seamless Transition ◽  
Neurology Clinic

AbstractNeurology patients often have disorders that require life-long care and ongoing treatment. The transition of pediatric neurology patients to adult neurology care, particularly in epilepsy, is an evolving concept that is recognized as important for patients and families. Children's Mercy Hospital, Kansas City has an established transition program that has been integrated into the neurology clinic as a part of standard care. Our experience and utilization of a transition program has provided our patients with a unique opportunity, empowering them to navigate their own care and create a seamless transition to adult neurology. Through a collaboration with the American Academy of Pediatrics and the Department of Health Resources and Services Administration, we have proposed a practice model designed to create a medical home for children and youth with epilepsy in rural underserved areas of Kansas. One of the core end points of this study is transition of care for youth with epilepsy using telemedicine. In this article, we describe our experience with a transition program for epilepsy patients and describe the very early implementation of this program to a telemedicine transition program designed for underserved rural populations.

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

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.

Development of the Shift Smartphone App to Support the Emotional Wellbeing of Junior Doctors: Design of a Prototype and Results of Usability and Acceptability Testing (Preprint)

2020 ◽  
Author(s):  
Isabelle Counson ◽  
Alexandra Bartholomew ◽  
Joanna Crawford ◽  
Katherine Petrie ◽  
Geetanjali Basarkod ◽  
...  
Keyword(s):  
Mental Health ◽  
User Experience ◽  
Help Seeking ◽  
Pilot Trial ◽  
User Involvement ◽  
Health Behaviours ◽  
Junior Doctors ◽  
User Centered Design ◽  
Emotional Wellbeing ◽  
Prototype Development

BACKGROUND Junior doctors report higher levels of psychological distress than more senior doctors and report several barriers to seeking professional mental health support, including concerns about confidentiality and career progression. Mobile health applications (mHealth apps) may be utilised to help overcome these barriers to assist the emotional wellbeing of this population and encourage help-seeking. OBJECTIVE We describe the development and pilot trial of the Shift mHealth app to provide an unobtrusive avenue for junior doctors to seek information about, and help for, wellbeing and mental health concerns that is sensitive to workplace settings. METHODS A 4-phase iterative development process was undertaken to create the content and features of Shift involving junior doctors, using principles of user-centered design. These four phases were: I) Needs assessment, based on interviews with 12 junior doctors; II) Prototype development with user experience feedback from two junior doctors; III) Evaluation, consisting of a pilot trial with 22 junior doctors to assess usability and acceptability of the initial prototype; and IV) Redesign, including user experience workshops with 51 junior doctors. RESULTS Qualitative results informed the content and design of Shift to ensure the app was tailored to junior doctors’ needs. The Shift app prototype contained cognitive-behavioural, mindfulness, value-based actions, and psychoeducational modules, as well as a tracking function visualising patterns of daily variations in mood and health behaviours. Pilot testing revealed possible issues with the organisation of the app content, which were addressed in a thorough restructuring and redesign of Shift with the help of junior doctors across three user experience workshops. CONCLUSIONS The current research demonstrates the importance of ongoing end-user involvement in the creation of a specialised mHealth app for a unique working population experiencing profession-specific stressors and barriers to help-seeking. The development and pilot trial of this novel Shift mHealth app are first steps in addressing the mental health and support-seeking needs of junior doctors, although further research is required to validate its effectiveness and appropriateness on a larger scale.

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

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.

scholarly journals The individualized, accompanied transition program “TraiN” for adolescent kidney patients – a local initiative

2021 ◽  
Vol 3 (1) ◽  
Author(s):  
Paula Collette ◽  
Luisa C. Klein ◽  
Lisa M. Körner ◽  
Gundula Ernst ◽  
Sandra Brengmann ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Disease Management ◽  
Health Risks ◽  
Pediatric Nephrology ◽  
Young Patients ◽  
Transition Program ◽  
University Hospital ◽  
Adult Care ◽  
Local Initiative

Abstract Since the transition from pediatric and adolescent to adult care often proceeds unaccompanied and unplanned, young patients with chronic kidney disease may experience health risks and non-adherence after the transfer. The psychosocial team at the Department of Pediatric Nephrology at the University Hospital of Cologne has therefore developed its local transition program “TraiN” for patients with chronic kidney disease aged 13 years and older. It combines structure and flexibility through predefined content modules that can be individually adapted to the patients, offering continuity and sustainability through a transition contact person. In addition, the family members are offered regular psychological consultations. The timing of the transfer is chosen individually depending on the level of psychosocial and medical transition readiness. The aim of “TraiN” is to strengthen the patients’ transition competence and the responsibility for their disease management and to provide them and their families the best possible support during the transition in order to prevent possible health risks. In the near future, a scientific evaluation will be conducted aiming to determine whether “TraiN” can support young people in their independence and self-reliant disease management.

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