Transitional Care For Young People Research Articles

Breathing across ages: a systematic review on challenges and components of transitional care for young people with asthma.

Asthma is a chronic condition that affects millions of adolescents and young adults (AYA) worldwide. The transition from pediatric to adult care presents unique challenges for this population, affecting their self-management, quality of life and overall health outcomes. This systematic review aims to consolidate the available evidence on challenges encountered by AYA with asthma during the transition period from child to AYA and on the key elements of transitional care for AYAs with asthma including the outcomes achieved, ultimately enhancing outcomes. A systematic literature search was performed in PubMed, Embase, Medline, Scopus, and Web of Science from their inception to October 2, 2023, to provide an overview of currently available literature. Primary quantitative and qualitative studies, published in peer-reviewed journals that focused on AYA with a confirmed diagnosis of asthma were considered if they focused on challenges encountered by AYA with asthma during the transition process and/or components of transitional care and their outcomes assessed. A total of 855 studies were initially identified and 6 articles were included in this systematic literature review. Several challenges experienced by AYA with asthma were identified including maintaining medication adherence, the need to take responsibility and being involved, understanding their condition and its severity, feeling left out of the care system, and experiencing a lack of engagement. The identified transitional care components included a standardized form for medical data transmission, a joint consultation and to offer several longer consultations. Several international guidelines for asthma care recommend implementing transition programs in the care for AYA with asthma. Such transition programs should include a comprehensive and individualized approach addressing several challenges faced, to ensure optimal outcomes post-transition. However, to date, data on effective components of transitional care facilitating good outcomes were found to be limited. This systematic review underscores the need for larger studies evaluating the effect of the components of transition programs.

Transitional Care for Young People with Movement Disorders: Consensus-Based Recommendations from the MDS Task Force on Pediatrics.

The International Parkinson and Movement Disorders Society (MDS) set up a working group on pediatric movement disorders (MDS Task Force on Pediatrics) to generate recommendations to guide the transition process from pediatrics to adult health care systems in patients with childhood-onset movement disorders. To develop recommendations for transitional care for childhood onset movement disorders, we used a formal consensus development process, using a multi-round, web-based Delphi survey. The Delphi survey was based on the results of the scoping review of the literature and the results of a survey of MDS members on transition practices. Through iterative discussions, we generated the recommendations included in the survey. The MDS Task Force on Pediatrics were the voting members for the Delphi survey. The task force members comprise 23 child and adult neurologists with expertise in the field of movement disorders and from all regions of the world. Fifteen recommendations divided across four different areas were made pertaining to: (1) team composition and structure, (2) planning and readiness, (3) goals of care, and (4) administration and research. All recommendations achieved consensus with a median score of 7 or greater. Recommendations on providing transitional care for patients with childhood onset movement disorders are provided. Nevertheless several challenges remain in the implementation of these recommendations, related to health infrastructure and the distribution of health resources, and the availability of knowledgeable and interested practitioners. Research on the influence of transitional care programs on outcomes in childhood onset movement disorders is much needed.

Growing up with chronic pain: a systematic review of the evidence in transitional care for young people with chronic pain.

Paediatric chronic pain presents a significant individual and societal burden, with an estimated prevalence of 11-38%. A large proportion of adolescents with chronic pain will have unresolved pain that continues into adulthood and thus requires transitional care. The aim of this review was to investigate the current evidence for the core components of effective transitional care interventions designed for young people with chronic pain. Studies were identified by searching the Embase, MEDLINE, CINAHL and PsycINFO databases. A search strategy using terms such as 'Adolescent', 'Persistent long-term pain' and 'Transition' (or variations of such words) was implemented. Inclusion criteria were sample population age 10-24 years, a confirmed diagnosis of a condition characterized by chronic pain, any healthcare setting, any service provider, published peer reviewed and English language. Ninety-eight articles were identified by the search and 14 were selected after abstract screening. Two independent reviewers screened the articles, followed by a senior reviewer. Of the 14 articles, full-text review found that none of the articles looked specifically at evidence with respect to core components of effective transitional care designed for young people with chronic pain. Chronic pain is a feature of many long-term health conditions. It remains unknown as to whether there are any pain-specific aspects of transitional care. How pain management is addressed in existing transitional care provision and the relationship of pain to outcomes needs further research. If effective interventions can be provided during these crucial years, the trajectory of these young people can potentially be improved into adulthood.

Abstract #1324711: Implementing a Structured Educational Program for Adolescents With Type 1 Diabetes in Arabic Culture: Are we Ready?

The increasing rates of newly diagnosed cases with type 1 diabetes among the youths (<20 years of age) with the suggestive evidence of poor glycemic control in teens with type 1 diabetes and the high rates of no show to clinic appointments have strived us to initiate the WICKED program, adapted from the UK. Improving transitional care for young people has the potential to improve health for many years to come. Currently there is a lack of any group strucuted education program in the MENA region.

P59 Growing up in rheumatology: An Evaluation of a Young Adult Rheumatology Service

P59 Growing up in rheumatology: An Evaluation of a Young Adult Rheumatology Service

Barriers and Challenges to Successful Transition of Young People with Emotional Behavioral Disorders

The overriding aim of this study was to provide a critical and comprehensive qualitative review of the current evidence regarding the barriers and challenges that delay successful transition of children and youths with emotional behavioral disorders (EBD) from the child- to adult-centered care systems. Methodology: To achieve the research aim mentioned above, empirical studies were electronically searched from leading databases such as NCBI, MEDLINE, EMBASE, PsycINFO, Proquest, CINAHL, and Google Scholar among other databases. Journals and reference lists relating to the transition of young people with EBD were also hand-searched to help in identifying unpublished manuscripts. Results and Discussion: In total, 11 studies were identified and included in this systematic review. Following a careful and a critical analysis of the various evidence-based studies reviewed, it emerged that the primary barriers and challenges to successful transitional care include: funding restrains and lack of resources; training gaps and different working practices and treatment philosophies between child- and adult-centered care systems; lack of transition services such as age-specialized case management and vocational support; as well as poor communication and collaboration between child- and adult-centered care systems. Other barriers identified in the available evidence-based literature, though they were reported to have a minor impact on successful transitional care include the general practitioners’ failure to refer young people, young people are not engaging in any kind of services because of stigmatizing attitudes, and incapacity to engage in outreach work. Conclusions and Recommendations: Though most of the studies reviewed in this systematic review are US and UK based, there is high-quality evidence to affirm that the above-listed factors are the main challenges and barriers to the successful transition of young people with EBD from the child- to adult-centered care systems. Therefore, a robust transitional care for young people with EBD may be achieved by filling the policy-practice gap and addressing the barriers mentioned above. &nbsp;

June Infographic

Movement DisordersVolume 36, Issue 6 InfographicFree Access June Infographic First published: 18 June 2021 https://doi.org/10.1002/mds.28504About ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat Abstract June Infographic: Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders Volume36, Issue6June 2021 RelatedInformation

Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders.

Childhood-onset movement disorders represent a heterogenous group of conditions. Given the complexity of these disorders, the transition of care from pediatric to adult medicine is an important consideration. We performed a scoping review of the literature on transitional care in chronic neurological disease, exploring key transitional issues and proposed transitional care models. Our aim was to describe the current knowledge and gaps about the transition process of young adults with chronic neurological disorders, paying special attention to childhood onset movement disorders. A total of 64 articles were included in the qualitative synthesis; 56 articles reported on transitional care issues, and 8 articles reported on transitional care models. Only 2 articles included patients with movement disorders. The following 4 main transitional issues were identified following synthesis of the available literature: (1) inadequate preparation for the transition process, (2) inappropriate and inconsistent transition practices, (3) inadequate adult services, and (4) heightened emotional response surrounding transition. Of the reported transitional care models, multidisciplinary ambulatory care was the most common approach. In studies evaluating patient-related outcomes, positive health, educational, and vocational outcomes were found. The available literature provides insights on issues that can arise during transition that should be addressed to improve patient and caregiver comfort and satisfaction with care. Further research is needed to evaluate how transitional care programs affect outcomes and their cost effectiveness. More studies are required to determine the needs and outcomes specific to patients with childhood onset movement disorders. © 2020 International Parkinson and Movement Disorder Society.

'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care.

Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child's transition to adult services, to identify parents' needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants (n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care.

A systematic review of the literature on ethical aspects of transitional care between child- and adult-orientated health services

BackgroundHealthcare policy and academic literature have promoted improving the transitional care of young people leaving child and adolescent mental health services (CAMHS). Despite the availability of guidance on good practice, there seems to be no readily accessible, coherent ethical analysis of transition. The ethical principles of non-maleficence, beneficence, justice and respect for autonomy can be used to justify the need for further enquiry into the ethical pros and cons of this drive to improve transitional care. The objective of this systematic review was therefore to systematically search for existing ethical literature on child- to adult-orientated health service transitions and to critically appraise and collate the literature, whether empirical or normative.MethodsA wide range of bioethics, biomedical and legal databases, grey literature and bioethics journals were searched. Ancestral and forward searches of identified papers were undertaken. Key words related to transition, adolescence and young adulthood, ethics, law and health. The timeframe was January 2000 to at least March 2016. Titles, abstracts and, where necessary, full articles were screened and duplicates removed. All included articles were critically appraised and a narrative synthesis produced.ResultsEighty two thousand four hundred eighty one titles were screened, from which 96 abstracts were checked. Forty seven full documents were scrutinised, leading to inclusion of two papers. Ancestral and forward searches yielded four further articles. In total, one commentary, three qualitative empirical studies and two clinical ethics papers were found. All focused on young people with complex care needs and disabilities. The three empirical papers had methodological flaws. The two ethical papers were written from a clinical ethics context rather than using a bioethical format. No literature identified specifically addressed the ethical challenges of balancing the delivery of transitional care to those who need it and the risk of pathologizing transient and self-limited distress and dysfunction, which may be normal during adolescence.ConclusionsThere is very little research on ethical aspects of transitional care. Most existing studies come from services for young people with complex care needs and disabilities. There is much scope for improvement in the amount and quality of empirical research and ethical analysis in this area.

Transition of young people with disability

Abstract Transition from child-centred to adult-oriented health services occurs at a time when young people are going through adolescence, with all the excitement and uncertainty that accompanies it. Most elements of good transitional care for young people with disabilities are the same as those for all young people with long term conditions. The article discusses ‘Developmentally Appropriate Healthcare’, the NICE guidance on transition, and the implications of the NIHR funded Research Programme on Transition, 2012–2017. However, additional consideration should be given to those with: • physical impairments such as cerebral palsy • mental health problems, including autism spectrum disorder, attention deficit disorder with hyperactivity or severe learning difficulties • isolated sensory impairments • very complex needs, requiring multi-sectoral packages of care It is crucial to aim to retain the engagement of a young person, even if he or she may not always attach to their healthcare the importance their clinician's think they should. Three key practical points are: • For child services: prepare properly young people from age 12 for transfer so that it is regarded as an exciting part of growing up, rather than a cliff from which to fall • For adult and child services: keep parents involved in a manner that suits both young person and parent • For adult and child services: ensure the young person and parents can meet the adult team at least once before transfer

Correction: EULAR/PreS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases.

Correction: EULAR/PreS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases.

Falling through the gaps: exploring the role of integrated commissioning in improving transition from children’s to adults' services for young people with long-term health conditions in England

ObjectivesTo explore the role of integrated commissioning in improving the transition of young people with long-term conditions from child to adult services. We aimed to identify organizational and policy gaps around transition services and provide recommendations for integrated commissioning practice.MethodsSemi-structured in-depth interviews were conducted with two groups of participants: (1) twenty-four stakeholders involved in the commissioning and provision of transition services for young people with long-term conditions in two regions in England; (2) five professionals with national roles in relation to planning for transition. Transcripts were interrogated using thematic analysis.ResultsThere is little evidence of integrated commissioning for transitional care for young people with long-term conditions. Commissioners perceive there to be a lack of national and local policy to guide integrated commissioning for transitional care; and limited resources for transition. Furthermore, commissioning organizations responsible for transition have different cultures, funding arrangements and related practices which make inter- and intra-agency co-ordination and cross-boundary continuity of care difficult to achieve.ConclusionsIntegrated commissioning may be an effective way to achieve successful transitional care for young people with long-term health conditions. However, this innovative relational approach to commissioning requires a national steer together with recognition of common values and joint ownership between relevant stakeholders.

The transition of adolescents with juvenile idiopathic arthritis or epilepsy from paediatric health-care services to adult health-care services: A scoping review of the literature and a synthesis of the evidence.

Young people with long-term health conditions (LTCs) can face challenges when making the transition to adult health services. This paper sought to identify studies that assess and explore transitional care for young people with LTCs. Two conditions were used as exemplars: juvenile idiopathic arthritis (JIA) and epilepsy. A scoping review of the literature was conducted by using search terms to search for papers in English between 2001 and 2016 concerning transitional care on four databases. Qualitative papers were reviewed and synthesized using thematic analysis. Quantitative papers using health outcomes were also synthesized. Twenty-eight papers were selected for review. Despite the wealth of literature concerning aspects of transitional care that are key to a successful transition for young people with JIA or epilepsy, there is a paucity of outcomes that define 'successful' transition and consequently a lack of reliable research evaluating the effectiveness of transitional care interventions to support young people moving to adult health services.

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

To develop standards and recommendations for transitional care for young people (YP) with juvenile-onset rheumatic and musculoskeletal diseases (jRMD). The consensus process involved the following: (1) establishing an international expert...

Transitional care for young people with diabetes: a national registry is urgently needed

AbstractYoung people with diabetes require specialised and personalised care as they make the transition from children's services to adult services. Getting the right care at this stage of their lives gives them the best chance of avoiding longer‐term complications and remaining within the health service. Many policy documents and guidelines have been issued highlighting the importance of diabetes care during these years but little evidence exists as to what should constitute that care and how it should be provided. Few interventions have been evaluated and there are no national data comparing the effectiveness of transition services across the country. A national register of diabetes transition services and agreed measures of quality would enable paediatric and adult services to evaluate and improve the care they provide for this important group of young people. Copyright © 2014 John Wiley &amp; Sons, Ltd.

Transitional services for adolescents with epilepsy in the UK: A survey

PurposeTo survey the current transitional epilepsy services in tertiary paediatric neurology centres in the UK within the principles of transitional care for young people with epilepsy. MethodsAn online web-based questionnaire was sent to the lead epilepsy clinicians in tertiary paediatric neurology centres on behalf of the British Paediatric Epilepsy Group, the specialist epilepsy group of the British Paediatric Neurology Association (BPNA). A transition clinic was defined as a ‘clinic or service that provided joint paediatric and adult supervision of care from paediatric to adult services’. ResultsTwenty-three centres were approached of which18 responded and 15 of which provided auditable data. The clinics were held between three and 12 times per year, mostly in the afternoon and sited equally between the paediatric and adult centre. Approximately three to five new, and three to eight follow up patients were seen in each clinic. Most clinics accepted new referrals with a minimum age of 14 and a maximum of 20 years. Most young people were seen only once in a transition clinic before then being promoted into the adult epilepsy service. Very few clinics accepted direct referrals from the GP. Adult, slightly more than the paediatric team provided out-of-hospital advice after the young person was seen in the transition clinic. ConclusionsYoung people with epilepsy are a challenging, but interesting group and their care at this time may have a potentially irreversible impact on their life. Their progress from paediatric to adult services should be a dynamic, gradual and smoothly transitioned process to optimise their care. Although recommended by the National Institute for Health and Clinical Excellence (NICE) and the National Services Framework (NSF), the findings of this survey would suggest an un-met need of this population.

Models of transitional care for young people with complex health needs: a scoping review

Young people with complex healthcare needs (CHNs) face the challenge of transferring from child to adult health services. This study sought to identify successful models of transitional care for young people with CHNs. Three conditions were used as exemplars: cerebral palsy, autism spectrum disorders and diabetes. Scoping review: using search terms concerning transitional care, four databases were systematically searched for papers published in English between 1980 and April 2010. Additional informal search methods included recommendations from colleagues working with young people with each of the three conditions and making contact with clinical and research teams with expertise in transitional care. Inclusion and exclusion criteria were applied to define the papers selected for review. A separate review of policy documents, adolescent health and transition literature was also undertaken; 10 common summary categories for the components of high-quality services were identified. All papers were coded using a framework analysis which evaluated the data in two ways using the 10 transition categories and four elements of Normalization Process Theory that are important for successful implementation and integration of healthcare interventions. Nineteen papers were selected for review. A very limited literature of models of service provision was identified for young people with cerebral palsy and diabetes. No models were identified for young people with autism spectrum disorders. Furthermore most publications were either descriptions of new service provision or time-limited pilot studies with little service evaluation or consideration of key elements of effective implementation. Despite agreement about the importance of effective transitional care, there is a paucity of evidence to inform best practice about both the process of and what constitutes effective transitional care. There is therefore an urgent need for research to evaluate current transitional care practices for young people with CHNs.

Transition from pediatric to adult diabetes care: smooth or slippery?

The purpose of this study is to evaluate the practices of diabetes health care providers concerning the transition from pediatric to adult diabetes care. The information presented here may help increase awareness of the organization of transitional care for young people with diabetes and prevent the loss of follow-up during this vulnerable period in their lives. A questionnaire with an explanatory letter was sent to all members (n = 578) of the International Society for Pediatric and Adolescent Diabetes (ISPAD). A follow-up mailing was sent 4 months later. In total, 92 questionnaires (16%) from members representing 36 countries were included in the analysis. In 76% of the centers, youth are seen until the age of 18 yr; 36% of the pediatric centers see adults > 25 yr; 30% report children under the age of 16 receive follow up from adult diabetologists or internists. About half of the programs already have a structured transition process usually targeting youth 16-25 yr of age. The majority of responders propose that preparation for transition starts at least 1 yr prior to leaving the pediatric center. Youth with type 1 diabetes often struggle to keep diabetes management a priority and find it challenging to maintain optimal metabolic control. When they graduate from pediatric care, some of these young people opt out of care altogether, only to resurface in the medical system when they develop complications which may have been prevented. Our survey of diabetes health care professionals in 36 countries worldwide shows that the actual transition practices in many places are far from optimal and require improvement. Transitional care should start early and strategies should promote uninterrupted, comprehensive, and accessible adult care.

Improving the young person's experience of transition: lessons from Wales.

Improving standards of care using the resources available requires leadership, team working and communication. A clinical governance framework is used in this article to demonstrate how arrangements for transitional care for young people with diabetes have been enhanced using the limited evidence available, as well as the experience of paediatric and adult team members. Changes to the way clinics were conducted and the introduction of additional joint nursing clinic appointments for the young people prior to formal medical transfer appointments aimed to reduce the risk of non attendance and contribute to the improvement of metabolic control in the young adult.