Transition of Care from Pediatric to Adult Care in Eosinophilic Esophagitis

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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Transition of Care in Paediatric Surgery: Current practices and perspectives of paediatric surgeons in Malaysia

Sultan Qaboos University Medical Journal [SQUMJ] ◽

10.18295/squmj.2019.19.04.011 ◽

2019 ◽

Vol 19 (4) ◽

pp. 352

Author(s):

Shung K. Tan ◽

Anand Sanmugam ◽

Mahmoud Danaee ◽

Tindivanam M. Ramanujam ◽

Mohan A. Nallusamy ◽

...

Keyword(s):

Professional Practice ◽

Early Stage ◽

Point Of View ◽

Transition To Adult Care ◽

Transition Of Care ◽

Paediatric Surgery ◽

Adult Care ◽

Survey Response Rate ◽

Surgical Conditions ◽

Current Practices

Objectives: Transition of care (TOC) from paediatric to adult care is still at an early stage in Malaysia. This study aimed to explore current practices and perspectives regarding TOC among paediatric surgeons in Malaysia. Methods: This study was carried out between June and December 2017. All 48 paediatric surgeons currently working in Malaysia were invited to participate in a questionnaire-based survey to assess demographic characteristics and practices and perspectives regarding TOC. Results: A total of 38 paediatric surgeons participated in the survey (response rate: 79.2%). Overall, 97.4% did not have an organised TOC model in their institution, with most (65.8%) caring for paediatric patients with complex surgical conditions until adulthood. Although the majority (86.8%) felt that care should be transitioned to adult surgeons with appropriate credentials, most surgeons (84.2%) nevertheless preferred to be involved in the management of adolescent patients after transition. However, there was no consensus regarding the most suitable age to begin the transition. Years of experience as a paediatric surgeon and place of practice did not affect overall TOC practice scores (P >0.050 each). The presence of adult comorbidities was considered the most common reason to initiate TOC (81.6%), while the lack of TOC guidelines was perceived to be the greatest barrier (84.2%). Conclusion: This study provides a better understanding of TOC from the point of view of paediatric surgeons in Malaysia. However, further studies involving other stakeholders (i.e. patients and adult surgeons) are needed to help formulate a suitable and successful TOC model in this setting.Keywords: Transition to Adult Care; Pediatrics; Adolescents; Surgery; Attitudes; Professional Practice; Malaysia.

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Abrupt Changes In Symptoms And Treatment During The Transition From Pediatric To Adult Care For Eosinophilic Esophagitis

Journal of Allergy and Clinical Immunology ◽

10.1016/j.jaci.2018.12.428 ◽

2019 ◽

Vol 143 (2) ◽

pp. AB141

Author(s):

Jocelyn Jia ◽

Lianne Soller ◽

Elaine Hsu ◽

Hin Hin Ko ◽

Vishal Avinashi ◽

...

Keyword(s):

Eosinophilic Esophagitis ◽

Adult Care ◽

Abrupt Changes

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Investigating the Experiences and Educational Needs of Adolescents with Hemophilia Prior to Transition of Care: A Website Development Project.

Blood ◽

10.1182/blood.v116.21.1526.1526 ◽

2010 ◽

Vol 116 (21) ◽

pp. 1526-1526

Author(s):

Lynn Sterling ◽

Joyce Nyhof-Young ◽

Victor S. Blanchette ◽

Vicky R. Breakey

Keyword(s):

Educational Needs ◽

Development Project ◽

Transition To Adult Care ◽

Transition Of Care ◽

Management Skills ◽

Structured Interviews ◽

Adult Care ◽

Perceived Preparedness ◽

Data Saturation ◽

Sick Children

Abstract Abstract 1526 Background: Adolescents with hemophilia (AWH) have heightened educational needs as they become more independent and transition from pediatric to adult care. Poor compliance during adolescence may lead to suboptimal management and its long-term sequelae. An innovative website is being developed to meet these educational needs and foster the acquisition of self-management skills. Purpose: To examine the educational needs of AWH treated at The Hospital for Sick Children and explore how a web-based transition program can best support them. Methods: Qualitative, semi-structured interviews with a purposive sample of AWH addressed subjects’ experiences with hemophilia, views about transition, internet use, and thoughts about an educational website. The interviews were audio-recorded and transcribed verbatim. Themes were identified through constant comparative analysis by three independent reviewers. Results: Eleven of twelve subjects that were approached consented to be interviewed and data saturation was achieved in the areas of interest. Important themes surrounding the hemophilia experience included personal identity and perception of their condition, challenges, raising awareness, and sources of support. Some participants had concerns about transition to adult care but many also recognized its benefits. There was a broad spectrum of perceived preparedness for transition. All participants felt comfortable using the Internet and overall, felt a website would help them to learn about haemophilia and explain it to others. Social networking with others with haemophilia was deemed desirable by many. Conclusions: AWH are interested in a hemophilia website and have identified a variety of features which they believe may help to support them during transition of care and beyond. Disclosures: Breakey: Baxter Bioscience Canada: Fellowship salary provided through unrestricted educational grant.

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Transition of care from paediatric to adult age for rare chronic disorders: an Italian experience

European Journal of Public Health ◽

10.1093/eurpub/ckaa166.919 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

E Olivero ◽

F Bert ◽

M Corezzi ◽

D Corsi ◽

S Dominici ◽

...

Keyword(s):

Social Support ◽

Multidisciplinary Approach ◽

Social Issues ◽

Illness Perception ◽

Healthcare Providers ◽

Drop Out ◽

Transition Of Care ◽

Adult Care ◽

Adult Age ◽

Taking Charge

Abstract Background Transition of care represents the transfer from child to adult care. An effective transition maintains continuity of care and presents better clinical outcomes. Thanks to improved survivorship of chronic paediatric patients to adulthood, this process has assumed growing relevance. Aim of the study was to evaluate quality and effectiveness of transition of care model of one of the biggest Hospitals of Northern Italy, that has organised a common structured model, differentiated according to patients' clinical and social complexity. Methods The sample consisted of patients with chronic rare diseases transited within the Hospital in the years 2016-2019. To analyse the evolution of all pathologies, for each patient the medical record was consulted; questionnaires were then administered to patients to investigate their illness perception and quality of life. Results The average age at transition of the retrospective study patients was 19.8±4.7 years. For most disorders, 100% of patients made the first post-transition visit. More than 90% of patients who did not make further post-transition visits were patients with Neurofibromatosis 1. Only 7 out of 18 patients with NF1 continued their treatment to the indicated specialist. One-year drop-out was 13%. Regarding the perception of one's own illness, 78% of respondents consider their health status from good to excellent, but more than 30% of respondents believe not to have currently adequate psychological and social support. Conclusions Transition of care represents an important phase in chronic diseases management. The proposed model assures a multidisciplinary approach, involving all specialists of both paediatric and adult teams. Preliminary data were positive and showed how this model could be an example for other institutions in Europe. Anyway, the transition model might be still be improved. Our data underlined the importance of a complete taking charge, with peculiar attention to psychological and social support. Key messages The study shows to the European Healthcare Providers the importance of a personalized planning of transition of care, that considers the complexity of clinical situation and concomitant social issues. A successful strategy of transition of care requires a multidisciplinary approach, that guarantees a complete taking charge, with peculiar attention to psychological and social support.

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Challenges in the Transition of Care Process for Patients with Dravet and Lennox–Gastaut Syndromes

Journal of Pediatric Epilepsy ◽

10.1055/s-0040-1716670 ◽

2020 ◽

Vol 09 (04) ◽

pp. 135-142

Author(s):

Cemal Karakas ◽

Rebecca J. Schultz ◽

Jay R. Gavvala

Keyword(s):

Transition Planning ◽

Medication Management ◽

Disease Process ◽

Parental Knowledge ◽

Transition Process ◽

Dravet Syndrome ◽

Care Process ◽

Transition Of Care ◽

Adult Care ◽

Transition Readiness

AbstractEpileptic encephalopathies such as Dravet syndrome (DS) and Lennox–Gastaut syndrome (LGS) present unique challenges in the transition of care not only for the providers but also for the patients and families. Some of these challenges include the complexity of disease process, differences in medication management between children and adults, high incidence of comorbidities such as psychosocial issues, a lack of structured transition process from pediatric to adult care, and the lack of parental knowledge and reluctance to transition to an adult provider. Improving transition readiness and transfer of care are essential to long-term management and continuity of care. Studies show that patients/families who possess transition readiness skills have better health outcomes. Furthermore, participation in a structured transition intervention has been shown to improve transition readiness and utilization of ambulatory care in the adult setting. Reported benefits of implementation of transition planning include increased self-esteem, improved health literacy, fewer emergency room visits, decreased hospitalizations and comorbidities, and fewer school absences. Nevertheless, there is a lack of evidenced-based, family/patient-centered transition model of care. This review's primary goal is to provide an overview of challenges in the transition of care and recommendations for an ideal transition for patients with DS and LGS.

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Transition from Pediatric Care to Adult Care in Headache Patients

10.20944/preprints201706.0067.v1 ◽

2017 ◽

Author(s):

Allyson Bazarsky ◽

Shalonda K. Slater ◽

Hope L. O’Brien

Keyword(s):

Economic Burden ◽

Medical Literature ◽

Medical Condition ◽

Pediatric Care ◽

Transition Of Care ◽

Common Condition ◽

Adult Care ◽

Transfer Of Care ◽

Headache Patients

Migraine is a common condition that affects children as they develop into adults. Transition of care from pediatric to adult care has becoming an increasingly popular topic in the medical literature. It has been suggested that discussions between patients, their families and providers should be initiated as early as age 13. Patients who are un or underprepared have poorer outcomes due to increased morbidity and worsening of their medical condition. Many children continue to have migraine into adulthood and if efforts are taken to ensure patients receive appropriate transfer of care, the results can significantly decrease the economic burden of this disease.

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Say Goodbye and Say Hello: The Transition from Pediatric to Adult Gastroenterology

Canadian Journal of Gastroenterology ◽

10.1155/2004/474232 ◽

2004 ◽

Vol 18 (12) ◽

pp. 735-742 ◽

Cited By ~ 29

Author(s):

Jorge L Pinzon ◽

Kevan Jacobson ◽

John Reiss

Keyword(s):

Ulcerative Colitis ◽

Health Care ◽

Health Care Providers ◽

Developmentally Appropriate ◽

Gastrointestinal Disorders ◽

Transition Of Care ◽

Care Providers ◽

Adult Care ◽

Appropriate Care ◽

Care Health

Pediatric and adult gastroenterologists have identified an important issue to be addressed which entails the process of transition of care for youth affected by chronic gastrointestinal disorders. The adolescent years are a time of change and development, and may be significantly affected by conditions such as Crohn's disease or ulcerative colitis. Health care providers need to advocate and provide comprehensive, developmentally appropriate care for youth and families to facilitate the transition from the pediatric to the adult setting. The present article will review important aspects of the transition from the pediatric to the adult care health system.

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