Transition of adolescents with severe asthma from pediatric to adult care in Spain: the STAR consensus

Objective: To assess the consensus level among a multidisciplinary expert panel on the transition of adolescents with severe asthma from pediatric to adult care. Methods: A 61-item survey was developed based on guidelines for other chronic pathologies, covering transition planning, preparation, effective transfer, and follow-up. A two-round Delphi process assessed the consensus level among 98 experts (49 pediatricians, 24 allergists and 25 pulmonologists). Consensus was established with ≥70% agreement. Results: Forty-two items (70%) reached consensus. No age range to initiate the transition was agreed upon by the panelists. The main goal to achieve during the transition identified by the experts is that adolescents gain autonomy to manage their severe asthma and prescribed treatments. The panelists agreed on the importance of developing an individualized plan, promoting patient’s autonomy, and identifying home environment factors. They agreed that the adult healthcare team should have expertise in severe asthma, biologics and management of adolescent patients. Pediatric and adult healthcare teams should share clinical information, agree on the criteria to maintain the biological therapy, and have an on-site joint visit with the patient before the effective transfer. Adult healthcare professionals should closely follow the patient after the effective transfer to ensure correct inhaler technique, treatment adherence and attendance to healthcare appointments. Conclusions: This consensus document provides the first roadmap for Spanish pediatric and adult teams to ensure that key aspects of the transition process in severe asthma are covered. The implementation of these recommendations will improve the quality of care offered to the patient.

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P138 Are adolescents prepared for transition? A survey of practice in Northern Ireland

Rheumatology ◽

10.1093/rheumatology/keaa111.133 ◽

2020 ◽

Vol 59 (Supplement_2) ◽

Author(s):

Claire Masih ◽

Dearbhla McKenna ◽

Michelle McHenry ◽

Madeline Rooney

Keyword(s):

Northern Ireland ◽

Geographical Area ◽

Retrospective Chart Review ◽

Clinical Information ◽

Transition Process ◽

Young Person ◽

Paediatric Rheumatology ◽

Adult Care ◽

Transition Clinic ◽

Paediatric Service

Abstract Background In Northern Ireland we have a single paediatric rheumatology service in which patients often stay until the end of education, before transferring to adult care. We lack a formal transition clinic or uniform process for transition. We wished to investigate whether adolescents transitioning to adult rheumatology care are sufficiently prepared for the process. Methods We surveyed the charts of patients within the paediatric rheumatology service aged over 16 years. Excluding patients who had were not under active follow up and those who had completed transition we studied 86 patients in a retrospective chart review. We studied the seven areas of readiness for transfer as recommended in the 'Ready Steady Go' programme. Results We had a population eligible for transition of 57 female and 29 male patients between the ages of 16 and 26. Around fifty percent had JIA, most commonly oligoarticular and polyarticular with other diagnoses including Raynauds, JIO, mechanical and pain conditions. Fifteen of these had been referred to the appropriate geographical area for transfer to adult service and 71 were yet to be referred. Readiness for transfer was poorly documented. Lifestyle issues (diet, exercise) and vocational (school, hobbies) were the best addressed with 41 and 56 patients respectively having at least one discussion on these aspects. Knowledge, self advocacy, ADLs, psychosocial and transition aspects were poorly documented. Conclusion We acknowledged that time pressures may have restricted what was recorded following appointments with focus on clinical information. However, we are aware of the lack of a formal transition programme within Northern Ireland and we feel this may contribute to patients spending a relatively prolonged time within the paediatric service. We have implemented quality improvement by using the 'Ready Steady Go' questionnaires within the paediatric service to improve preparedness for adult transfer and are reviewing our service of paediatric transfer. Introduction of the ‘Hello to adult services’ questionnaire by adult rheumatologists may help to achieve a more successful transition process by highlighting areas in which the young person may benefit from extra care by their adult team. Disclosures C. Masih None. D. McKenna None. M. McHenry None. M. Rooney None.

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Learning disability services: user views on transition planning

Tizard Learning Disability Review ◽

10.1108/tldr-07-2017-0032 ◽

2018 ◽

Vol 23 (3) ◽

pp. 150-158 ◽

Cited By ~ 1

Author(s):

Jane Hughes ◽

Sue Davies ◽

Helen Chester ◽

Paul Clarkson ◽

Karen Stewart ◽

...

Keyword(s):

Learning Disabilities ◽

Learning Disability ◽

Continuity Of Care ◽

Planning Process ◽

Transition Planning ◽

Transition Process ◽

Youth Workers ◽

Full Time ◽

Adult Care ◽

Content Type

Purpose The purpose of this paper is to explore the views of people with learning disabilities on issues associated with continuity of care in the transition from full-time education to adult care and support. Design/methodology/approach Data collection was undertaken with people with learning disabilities and staff in two advocacy organisations in one area of England in 2012. In total, 19 participants attended three focus groups. Analysis focussed on continuity of care and was guided by the framework approach to qualitative analysis. Findings Teachers, social workers in children’s services and youth workers were identified as making important contributions to the transition process. Information relating to learning and social development was identified as most important to inform transition planning with less priority accorded to health, communication, and self-care and independence. Participants appeared to value principles which underpin continuity of care. Research limitations/implications This study provides insights into attributes of continuity of care valued by people with a learning disability. Possibilities of translating these attributes into practice within localities are explored. Findings could be used to inform strategic planning locally to promote service integration thereby contributing to continuity of care within transition planning. Originality/value Continuity of care in the transition planning process is highlighted in policy guidance with recognition that both practice and procedures require improvement. This research explores areas for development from the perspective of people with learning disabilities.

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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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Health-care Transition: A Vital Part of Care, Growth, and Change for Pediatric Patients

Pediatrics in Review ◽

10.1542/pir.2020-000422 ◽

2021 ◽

Vol 42 (12) ◽

pp. 684-693

Author(s):

Lynn F. Davidson ◽

Maya H. Doyle

Keyword(s):

Health Care ◽

Transition Process ◽

Smooth Transition ◽

Pediatric Care ◽

Care Transition ◽

Care Needs ◽

Adult Care ◽

Health Care Transition ◽

Care Gaps ◽

Growth And Change

Preparing all youth for the transition to adult-oriented care, adulthood itself, and a greater responsibility for their own health and health-care is an essential part of pediatric care. This process, typically described as health-care transition, can occur throughout ongoing pediatric health-care to prepare patients for transfer to an adult clinician and integration into adult care. Gaps remain in practice and in outcomes research regarding health-care transition. This review discusses recent literature, details best practices, and recommends guidance and tools to assist pediatric clinicians in providing a smooth transition process and a successful transfer to adult care for youth with and without special health-care needs.

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Transition of Inflammatory Bowel Disease Patients from Pediatric to Adult Care: An Observational Study on a Joint-Visits Approach

10.21203/rs.3.rs-99432/v1 ◽

2020 ◽

Author(s):

Antonio Corsello ◽

Daniela Pugliese ◽

Fiammetta Bracci ◽

Daniela Knafelz ◽

Bronislava Papadatou ◽

...

Keyword(s):

Quality Of Life ◽

Inflammatory Bowel Disease ◽

Observational Study ◽

Bowel Disease ◽

Transition Process ◽

Major Surgery ◽

Adult Care ◽

Inflammatory Bowel ◽

The Mean

Abstract BackgroundTransition from pediatric to adult care of patients affected by Inflammatory Bowel Disease (IBD) is a critical step that needs specific care and multidisciplinary involvement. The aim of our study was to evaluate the outcome of the transition process of a cohort of IBD patients, exploring their readiness and the consequent impact on quality of life.MethodsThis observational study followed transitioned patients up for a minimum of 18 months after the beginning of transition process, from January 2014 to April 2019. Transition was carried-out through joint visits pediatricians and adult gastroenterologists. Clinical data before and after transition were collected. A subgroup of patients was submitted to an anonymous online questionnaire of 38 items drawn up based on the validated questionnaires TRAQ and SIBDQ within the first 6 months from the beginning of transition process.ResultsEighty-two patients with IBD were enrolled, with a mean age at transition of 20.2±2.7 years. Before transition, 40.2% of patients already had major surgery and 64.6% started biologics. At transition, 24% of patients were in moderate to severe active phase of their disease and 40% of them had already been treated with ≥ 2 biologics. The mean value of the TRAQ questionnaires was 3.4±0.5 and the mean score of SIBDQ was 53.9±9.8. A significant association was found between a TRAQ mean score > 3 and a SIBDQ > 50 (p=0.0129). Overall, 75% of patients had a positive opinion of the transition model adopted.ConclusionsA strong association has been found between TRAQ and SIBDQ questionnaires, showing how transition readiness has a direct impact on the quality of life of the young adult with IBD.

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A need-adapted transition program after pediatric kidney transplantation

Journal of Transition Medicine ◽

10.1515/jtm-2018-0004 ◽

2019 ◽

Vol 1 (1) ◽

Cited By ~ 1

Author(s):

Susanne Rieger ◽

Dirk Bethe ◽

Angela Bagorda ◽

Dorothea Treiber ◽

Jörg Beimler ◽

...

Keyword(s):

Renal Transplant ◽

Transition Process ◽

Transition Program ◽

Renal Transplant Recipients ◽

Transplant Recipients ◽

Adult Care ◽

Increased Risk ◽

Pediatric Renal Transplant ◽

The Individual ◽

The Impact

AbstractA successful transition of renal transplant recipients from pediatric to adult care requires a structured, need-adapted and multidisciplinary approach to preserve renal graft function during this critical period of life. In this article we present our clinical protocol for transition from pediatric to adult care, which we developed on the basis of the International Society of Nephrology (ISN)/International Pediatric Nephrology Association (IPNA) consensus guidelines influenced by our own experience. This transition program was established in our center in July 2017. The entire transition process is structured and accompanied by a transition key worker (social worker). From 12 years of age we train pediatric renal transplant recipients in medical knowledge, self-management skills and networking with self-help groups. The training is adapted to the individual patient‘s intellectual ability, lasts about 10 years and takes place with increasing intensity. Repeatedly we perform standardized informational interviews and check patient’s knowledge of transplant-related topics. Psychosocial and educational issues are evaluated concomitantly. The actual transfer takes place in a pediatric-adult-transition clinic. Relevant medical and psychosocial aspects are discussed and the future treatment regimen is established. The date of transfer is adapted to the individual patient’s need; it varies between 18 and 24 years of age. In periods of increased risk for non-adherence the transfer is postponed to intensify the efforts for training and assistance. After transfer a standardized evaluation of each individual patient takes place focusing on medical and psychosocial issues and on satisfaction with the transition process. Collection of these data is still in progress and will be analyzed systematically at a later stage in order to evaluate the impact of this new transition program on the stability of transplant function. That analysis might serve as a basis for negotiations about refunding with health insurance companies.

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Academy of Emergency Medicine and Care-Society of Clinical Biochemistry and Clinical Molecular Biology consensus recommendations for clinical use of sepsis biomarkers in the emergency department

Emergency Care Journal ◽

10.4081/ecj.2017.6877 ◽

2017 ◽

Vol 13 (2) ◽

Cited By ~ 2

Author(s):

Giuseppe Lippi ◽

Martina Montagnana ◽

Fiamma Balboni ◽

Andrea Bellone ◽

Ivo Casagranda ◽

...

Keyword(s):

Emergency Department ◽

Emergency Medicine ◽

Clinical Biochemistry ◽

Clinical Information ◽

Clinical Value ◽

Suspected Sepsis ◽

Consensus Document ◽

Diagnostic Threshold ◽

High Negative Predictive Value ◽

Routine Assessment

Increasing evidence is emerging that the measurement of circulating biomarkers may be clinically useful for diagnosing and monitoring sepsis. Eight members of AcEMC (Academy of Emergency Medicine and Care) and eight members of SIBioC (Italian Society of Clinical Biochemistry and Laboratory Medicine) were identified by the two scientific societies for producing a consensus document aimed to define practical recommendations about the use of biomarkers for diagnosing of sepsis and managing antibiotic therapy in the emergency department (ED). The cumulative opinions allowed defining three grade A recommendations (i.e., highly recommended indications), entailing ordering modality (biomarkers always available on prescription), practical use (results should be interpreted according to clinical information) and test ordering defined according to biomarker kinetics. Additional grade B recommendations (i.e., potentially valuable indications) entailed general agreement that biomarkers assessment may be of clinical value in the diagnostic approach of ED patients with suspected sepsis, suggestion for combined assessment of procalcitonin (PCT) and Creactive protein (CRP), free availability of the selected biomarker(s) on prescription, adoption of diagnostic threshold prioritizing high negative predictive value, preference for more analytically sensitive techniques, along with potential clinical usefulness of measuring PCT for monitoring antibiotic treatment, with serial testing defined according to biomarker kinetics. PCT and CRP were the two biomarkers that received the largest consensus as sepsis biomarkers (grade B recommendation), and a grade B recommendation was also reached for routine assessment of blood lactate. The assessment of biomarkers other than PCT and CRP was discouraged, with exception of presepsin for which substantial uncertainty in favor or against remained.

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The meaning of losing a child in older adults: a qualitative study

BMC Geriatrics ◽

10.1186/s12877-021-02609-9 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Azade Safa ◽

Mohsen Adib-Hajbaghery ◽

Mahboubeh Rezaei ◽

Marzieh Araban

Keyword(s):

Older Adults ◽

Qualitative Study ◽

Adult Child ◽

The Elderly ◽

Healthcare Team ◽

Elderly Parents ◽

Heart Of Darkness ◽

Deceased Child ◽

Positive Meaning ◽

Age Range

Abstract Background After losing their child, elderly parents look for a meaning in this phenomenon. This meaning comes out from their experiences, and their responses to and actions in life are shaped based on this meaning. Therefore, this study was conducted with the aim of “understanding the meaning of losing a child in older adults.” Methods This qualitative study was conducted using conventional content analysis method. Using semi-structured face-to-face interviews, data were collected from 15 older adults who had experienced of losing their adult child. Data analysis was performed according to the steps proposed by Graneheim and Lundman, 2004. To prove the trustworthiness of the data, credibility, dependability, confirmability and transferability were used. Results The age range of participants was between 61 and 83 years and 73.3% of them were female. The two main categories of “tasting the bitter flavor of life” and “searching for a positive meaning in losing a child” together with the theme of “finding hope in the heart of darkness” were extracted from the participants’ experiences. Conclusions Despite the grief of losing a child, which had cast a dark shadow over the parents’ lives, the child’s liberation from worldly sufferings, his/her presence in a better world, and being hopeful about the grace of God had caused the elderly parents to find hope in the heart of darkness. After identifying the parents with a deceased child, they should be helped through psychological counseling and care of the healthcare team so that they can adapt to this situation by finding a positive meaning in losing their child.

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Designing the careful and kind clinic: an evidence-based approach

BMJ Leader ◽

10.1136/leader-2021-000538 ◽

2021 ◽

pp. leader-2021-000538

Author(s):

Sara Poplau ◽

Mark Linzer ◽

Dominique Allwood ◽

Victor Montori ◽

Ryan Armbruster ◽

...

Keyword(s):

Time Pressure ◽

Organisational Culture ◽

Healthcare Team ◽

Evidence Based ◽

Team Members ◽

Gender And Race ◽

Optimal Health ◽

Healthy Workplace ◽

And Performance ◽

Key Aspects

BackgroundThere is evidence that creating a ‘healthy workplace’ can be of profound importance for clinicians, team members and patients. Yet there have been few papers that have proposed mechanisms to take decades of research and translate this into a practical list of options for leaders and managers to take into account when structuring a clinic based on care and kindness to achieve optimal health.EvidenceWe bring together 20 years of scholarship linking care of the caregivers with outcomes for caregivers and patients. The data are used to support both structures and cultures that will result in satisfied and thriving healthcare team members, as well as satisfied and healthy patients.ResultsThe clinic based on care of the caregivers will be structured to address key aspects of worklife that are known to cause either satisfaction or burnout. Aspects of care, such as time pressure, chaotic environments and worker control of their workplace, will be taken into account in clinical design; organisational culture will be supportive and cohesive, emphasising quality, values and communication. Experiences based on gender and race will be measured and continuously improved; and performance will be evaluated in a new, human-centred manner.OutcomesThe careful and kind clinic will be a remarkable place to work; in contrast to industrialised healthcare, this will be an environment where health can indeed be optimised, for both workers and patients.

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Comparing Patterns for Transitioning the Care of Young Adults with Sickle Cell Disease Versus Hemophilia: The Toronto Experience

Blood ◽

10.1182/blood.v118.21.2072.2072 ◽

2011 ◽

Vol 118 (21) ◽

pp. 2072-2072 ◽

Cited By ~ 1

Author(s):

Ewurabena Simpson ◽

Richard Ward ◽

Melanie Kirby ◽

Isaac Odame

Keyword(s):

Health Care ◽

Young Adults ◽

Sickle Cell Disease ◽

Medical Care ◽

Disease Severity ◽

Sickle Cell ◽

Cell Disease ◽

Adult Care ◽

Effective Transfer

Abstract Abstract 2072 Background: The Hospital for Sick Children (HSC) in Toronto, Canada cares for more than 700 children with sickle cell disease (SCD), which is the largest Canadian population of children with SCD. Since 2009, the SCD Program at HSC has partnered with adult hematologists within the Red Blood Cell Disorders program at Toronto General Hospital (TGH) to develop a coordinated strategy for transitioning the care of young adults with SCD. Hemophilia is a chronic hematological condition which, like SCD, has a spectrum of disease severity that requires multidisciplinary follow up. At HSC, we care for nearly 200 patients with hemophilia A and B and have a long-established partnership with adult hematologists, which has led to an effective transfer of patients with hemophilia into adult care. In Ontario, adult health providers are remunerated according to a fee-for-service billing schedule. In contrast, pediatric subspecialists are mainly salaried under an alternate funding plan. Until 2010, adult hematologists who provided medical care for individuals with hemophilia received a significantly higher pay scale than those who cared for individuals with SCD. This was changed in July 2010 so that adult hematologists receive commensurate remuneration for services rendered for both hemophilia- and SCD-related medical care. Objectives: 1. To compare the patterns for transitioning patients of varying disease severity within the pediatric and adult SCD and hemophilia programs in Toronto, Ontario. 2. To identify barriers and enablers that have influenced the transition of young adults with SCD within a universal health care system. Methods: Data for active, transitioned and inactive patients in the HSC and TGH clinical programs are maintained in a database at HSC. These patient numbers were gathered according to sickle cell genotype. Similar data were available for hemophilia patients who were transitioned from HSC to adult care. Chi-square analyses were used to compare the proportions of patients in the sickle cell and hemophilia programs that were transitioned between 2009 and 2011. Results: Conclusion: The HSC-TGH- partnership has significantly reduced the number of youth with SCD who continue to be followed at HSC or are lost to follow up. However, a significant number of young adults within the HSC SCD program still need to be transitioned to adult care. For the sustainable expansion of this transitional care strategy, health policymakers must collaborate with tertiary and community level health care providers to develop a coordinated and distributed strategy for the effective delivery of comprehensive health care services for young adults with SCD. Disclosures: No relevant conflicts of interest to declare.

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