Adolescent schizophrenia: state of the art and proposals to improve transition management in Italy.

In mental health care, transition refers to the pathway of a young person from a child and adolescent mental health service (CAMHS) to an adult mental health service (AMHS). In Italy, the age of transition from adolescents to adults' mental health services is at the age of 18. Difficulties in transitioning have shown to favor patients' and families' disengagement and discontinuity of care with pharmacological treatment dropouts. On the other hand, a smooth and effective transition may improve the management of the disease and increase the chances of improvement of young schizophrenic patients. This project of roundtables, including child neuropsychiatrists (CNPs) and adult psychiatrists (Psy) throughout Italy, was aimed at exploring the problems of transition in clinical practice and collecting the proposals to improve transition management. The need to fill some cultural and organizational aspects strongly emerged to improve the transition process of adolescents with schizophrenia to adults' mental health services. On the one hand, specific training programs for both Psy and CNPs on the transition process are hoped for. On the other hand, both Psy and CNPs have expressed a need for shared official protocols, direct handover between the services including a period of shared management, and building of territorial multidisciplinary teams. All these aspects imply having a national mental health policy dedicated to taking charge of young people with mental health disorders, and accompanying them across the border between children and adults' mental health services. Improving transitional care can facilitate not only recovery but also prevention of mental illness for young people. Allocation of resources should aim at matching the epidemiological burden and reducing the heterogeneity between Italian regions.

Developmentally appropriate transitional care during the Covid-19 pandemic for young people with juvenile-onset rheumatic and musculoskeletal diseases: the rationale for a position statement.

BACKGROUND: The importance of developmentally appropriate transitional care in young people with juvenile-onset rheumatic and musculoskeletal disease is well recognised. The Paediatric Rheumatology European Society (PReS) / European League Against Rheumatism (EULAR) Taskforce has developed international recommendations and standards for transitional care and a growing evidence base supports the positive benefits of such care. However, there is also evidence that universal implementation has yet to be realised. In 2020, against this background the COVID-19 pandemic arrived with significant impact on all our lives, young and old, patient, public and professional alike. The unfortunate reality of the pandemic with potential for unfavourable outcomes on healthcare provision during transition was acknowledged by the PReS working groups in a position statement to support healthcare professionals, young people and their caregivers. AIM: The aim of this review is to present the literature which provides the rationale for the recommendations in the PReS Position Statement. The following areas are specifically addressed: the prime importance of care coordination; the impact of the pandemic on the various aspects of the transition process; the importance of ensuring continuity of medication supply; the pros and cons of telemedicine with young people; ensuring meaningful involvement of young people in service development and the importance of core adolescent health practices such as routine developmental assessment psychosocial screening and appropriate parental involvement during transitional care.

Health care transition for individuals with Down syndrome: A needs assessment.

Transition to adulthood is a multifaceted process that requires integration of numerous domains within a young person's life, including their health care. For children with special health care needs, the transition process can be markedly more difficult to navigate. This is especially true for children with Down syndrome (DS) who receive fewer transition planning services. The aim of this needs assessment was to identify current trends, potential gaps, and areas for targeted intervention within the current transition landscape for individuals with DS. We utilized DS-Connect, a National Institutes of Health (NIH) funded family/self-advocate survey repository, as a platform to recruit respondents to the "Transition to Adulthood" survey. Sixty-five respondents (64 parents and 1 caregiver) completed the survey. Responses indicated that 42% of respondents reported comfort in the transition process, but 5% or less reported completing one of the core transition outcomes: transition readiness assessment, portable medical summary, or written transition plan. These findings translated across other domains of respondents' lives. While many individuals with DS and their caregivers are aware of the transition process, there appears to be a disconnect between the introduction of transition concepts and an actualization of transition outcomes necessary for success.

National Trends of Hospitalizations in Cystic Fibrosis Highlight a Need for Pediatric to Adult Transition Clinics.

OBJECTIVES: We hypothesized that hospitalizations in cystic fibrosis (CF) would reflect the development of age-related comorbidities. METHODS: A retrospective analysis was performed using the Nationwide Inpatient Sample (2002-2017). Hospitalizations for which the principal diagnosis was CF were analyzed regarding age at discharge and presence of comorbidities. Trends were assessed for significance using the Cochran-Armitage test. RESULTS: The mean age of patients hospitalized for CF increased from 19.7 years in 2002 to 23.0 years in 2017 (P = 0.017). Several comorbidities are more than 10 times more prevalent among adults as compared with children, including congestive heart failure, substance abuse, and chronic kidney disease (P < 0.001). In addition, diabetes with chronic complications was more prevalent in adults than children (10.0% vs 3.9%; P < 0.001), as was hypertension (7.2% vs 1.3%; P < 0.001) and osteoporosis (10.2% vs 1.9%; P < 0.001). More than 65% of CF hospitalizations in 2017 were in individuals older than 18 years. CONCLUSIONS: Hospitalizations for adults with CF are increasing, and individuals with CF are developing age-related comorbidities. Providers equipped to manage the health care needs of adults need to be ready and able to care for this unique and growing patient population.

Health Care Transition Services and Adaptive and Social-Emotional Functioning of Youth with Autism Spectrum Disorder.

To promote health care transition services (HCTS) among youth with autism spectrum disorder (ASD), it is important to understand their access to HCTS and the association with functioning. We conducted weighted descriptive statistics and regressions. Findings suggested that HCTS were inconsistently provided to youth with ASD. Access to two or more HCTS was associated with positive social-emotional functioning. Helping youth with ASD understand health care changes and working with them to gain skills in managing health needs were found to be significant determinants of positive social-emotional functioning. The present study sheds light on HCTS that are essential for youth with ASD and highlights the necessity of health care system changes to promote service access and optimal functioning for youth with ASD.

Transition of patients with childhood onset epilepsy: Perspectives from pediatric and adult neurologists.

Transition from pediatric to adult care systems is a major challenge in the management of adolescents with epilepsy. The comparison of pediatric and adult physicians' points of view on this issue is scarcely described. The aim of this study was to understand pediatric and adult neurologists' experience and opinions on transition in epilepsy in France. We investigate the age at which they usually transfer patients, their opinion on the factors that positively or negatively impact transition, on the help provided during this transition period, and their propositions to improve this process. We prepared a targeted questionnaire with two versions, one adapted for neurologists and the other for child neurologists. The questionnaires were diffused through the Reference Centre for Rare Epilepsies, the French Chapter of the League Against Epilepsy, the French Association for Office-based Neurologists, and the French Pediatric Neurology Society. A total of sixty-eight physicians involved mostly in epilepsy care answered this questionnaire: 39 child neurologists and 29 neurologists. Questionnaires were filled at 96.8%. Twenty-six child neurologists followed patients aged over 18 years (70%), and 18 neurologists followed patients under the age of 12 years (66.6%). Cognitive impairment in childhood led significantly to a later transfer to adult care. The major factors believed to delay the transfer were attachment between child neurologists and families as reported in 96.3% by neurologists and in 81.1% by child neurologists, p = 0.07 and lack of adaptation of adult neurology facilities to adolescents especially with intellectual disability (59.3% neurologists, 75.7% child neurologists, p = 0.16). Factors that helped a transfer around 18-19 years were mainly pharmacoresistant epilepsy (71% for neurologists vs. 19% for child neurologists, p < 105) and pregnancy (72% for child neurologists versus 50% for neurologists, p = 0.08). Factors that negatively impacted transition were the lack of information about daily life in adulthood (driving license, contraception, sexuality, carrier guidance, etc.), the weak transition preparation in pediatric system, the lack of knowledge of pediatric epilepsy syndromes, and the lack of global support for patients with intellectual disability and multidisciplinary care needs in adult system. Both groups proposed joint clinics (>65% of providers) and development of care networks between pediatric and adult care for patients with epilepsy (>55%) to improve transition as well as introducing courses on transition. Few physicians were aware of transition and transfer recommendations. Although child and adult neurologists still have some preconceived beliefs, they were able to identify the strengths and weaknesses of both care systems paving the way for proposals to improve transition and transfer of patients with epilepsy from pediatric to adult care.

In transition with ADHD: the role of information, in facilitating or impeding young people's transition into adult services.

BACKGROUND: Many national and regional clinical guidelines emphasise the need for good communication of information to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates only a minority of young people in need of transition for Attention Deficit Hyperactivity Disorder (ADHD) experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative study explored the role that information plays in experiences of transition from the perspectives of parent/carers and young people. METHODS: Participants were recruited from 10 National Health Service Trusts, located across England, with varying service configurations. Ninety two qualitative interviews were conducted: 64 with young people with ADHD at different stages relative to transition, and 28 with parent/carers. Thematic analysis of data was completed using the Framework Method. RESULTS: Interviewees reported a range of experiences; however reliance on parent/carers to gather and translate key information, and negative experiences associated with poor communication of information, were universal. Three themes emerged: Navigating information with help from parents; Information on ADHD into adulthood; Information about the transition process. The first revealed the essential role of parent in the translation and application of information, the other two explored distinct types of information necessary for a smooth transition. Interviewees made recommendations for clinical practice similar to UK (United Kingdom) National Institute for Health and Care Excellence (NICE) guidelines, with an additional emphasis on providing nuanced information on ADHD as a potentially long term condition. It was important to interviewees that General Practitioners had a basic understanding of adult ADHD and also had access to information about service provision. CONCLUSIONS: Our findings illustrate that the availability and communication of information to young people and their parent/carers is an essential component of the transition process between child and adult ADHD services. How and when it is provided may support or impede transition. This study constitutes a substantial contribution to the evidence base, drawing on interviews from a range of participants across England and from Trusts offering different types of services.

Do autistic patients change healthcare services utilisation through the transition age? An Italian longitudinal retrospective study.

OBJECTIVES: This paper aims to provide an estimate of the prevalence rate of autism spectrum disorder (ASD) in 8-year-olds in 2017 based on administrative databases and to investigate the change in healthcare service use during the healthcare transition age of 18. DESIGN: This research is based on a longitudinal retrospective cohort study. SETTING: The data is drawn from the Italian Administrative Healthcare Database (2010-2017). PARTICIPANTS: We identified 5607 ASD patients; 331 ASD patients from 2012 to 2015 in the calendar year of their 18th birthday were selected and their health service utilisation during a 5-year period-ranging from 2 years preceding and succeeding their 18th year-were investigated. INTERVENTIONS: None. PRIMARY AND SECONDARY OUTCOME MEASURES: Prevalence, incidence and proportion of ASD patients receiving specific healthcare services were included in the outcome measures. RESULTS: Prevalence of ASD at age 8 was 5.4/1000. Global access to health and social services was lower both before and after age 18 (46.5% at 16; 68.0% at 18; 54.1% at 20). The percentage of patients receiving a neuropsychiatric consultation decreased after age 18 (30.8% at 18; 5.4% at 20). Community mental health services (CMHS) utilisation rate increased above 18 years of age. Regarding psychiatric visits, for both outpatient and CMHS, an increase was observed from 17.8% at age 18 to 25.4% at age 20. The utilisation of rehabilitation services decreased with age, dropping from 17.8% at age 16 to 1.8% at age 20. Psychiatric outpatient services remained stable across ages at about 14%. CONCLUSION: Our findings suggest that ASD patients changed clinical reference services with age from neuropsychiatric and rehabilitative services towards psychiatric and community-based services as they transitioned from paediatric to adult healthcare services.

Healthcare needs and programmatic gaps in transition from pediatric to adult care of vertically transmitted HIV infected adolescents in India.

Treatment transition for 'adolescents living with perinatally acquired HIV' (ALPH) from paediatric to adult care is not addressed adequately. This study explores the ALPH's health care needs and programmatic gaps in health systems for the care of ALPH in India. Forty-nine in-depth interviews were conducted with purposively selected primary and key stakeholders in India. Thematic analysis utilizing grounded theory was performed in QSR NUD*IST 6. Stakeholders explicitly recognized adolescent HIV to be a critical public health issue which requires a separate mandate in India. It was found that none of the health policies in India focus on adolescent age group; ALPH is therefore even more neglected population. No/partial HIV disclosure to ALPH is the first crisis for retention in care continuum and adherence to the treatment becomes sub-optimal. Unmet needs of transitioning from paediatric to adult care in existing settings was the major gap. Age-specific counselling guidelines and counselling skills among HCPs were found lacking where tailored counseling and capacity building of HCPs was an expectation. Need of holistic approach for adolescents led to consensus on establishing 'adolescent transition clinic' with a strict 'no' for 'standalone Adolescent HIV' clinics. School setting having peer-based counselling provision was recommended. Age disaggregated health data is required to inform the policymakers about adolescents' specific needs for developing interventions. Situational analysis to identify and shape health priorities of adolescents is recommended.

Improving Transitions of Care for Healthy Adolescents and Young Adults.

OBJECTIVES: To explore the gaps in care within the transition process from pediatric to adult medicine for healthy and noncomplex adolescents and young adults and to highlight the importance of identifying and adapting interventions to improve transitions for this population. METHODS: Three researchers independently completed searches in PubMed, PsychINFO, and CINAHL Complete. The review used the following inclusion criteria: English-language original research articles published between January 2007 and January 2018 involving care transitions for male and female patients ages 13 to 24 years with diagnoses that may be managed only by a primary care provider. Studies were excluded if they were reviews or commentaries, included only specialist providers, or primarily investigated children with special healthcare needs. The articles selected based on these inclusion and exclusion criteria, as well as those identified through review of references of included articles and known articles not found through those searches, were analyzed for suitability. RESULTS: Nine studies were included in the review. Limited consensus existed on how transitions of care should be approached for healthy and noncomplex adolescents, despite the 2002, 2011, and 2018 policy statements and clinical reports providing guidelines on transition processes. Perceptions about when to initiate the process, what to discuss about transitions, and how to approach those conversations varied among providers. CONCLUSIONS: The literature is limited regarding transitions of care from pediatric to adult medicine for healthy and noncomplex adolescents and young adults. Areas for intervention were identified from these studies and have yet to be explored. Additional research is needed to overcome transition obstacles and to tailor interventions to help healthy and noncomplex adolescents and young adults at this vulnerable time of their lives.

Preparing young people with complex needs and their families for transition to adult services.

Improving survival rates for children and young people with complex health needs requires a robust system for transition to adult services. Effective planning is essential to ensure a smooth transition process that is in the best interests of the young person and their family. This article discusses the needs and requirements for planned and purposeful transition processes to support young people with complex healthcare needs and their families. It considers the preparation of adult services, the team, the young person and their parents in line with an integrated approach and the nurse's role. Recommendations for practice include the necessity for an integrated approach to ensure optimum outcomes and ascertaining the potential value of a nurse-led service in delivering the transition process. A carefully tailored planning strategy should be developed to prepare and support young people with complex health needs through transition.

Framing the future: Family preparedness for care transitions of critically ill children.

INTRODUCTION: Improving family centered care in the PICU requires understanding the milestones that families need assistance preparing for as well as factors that facilitate or obstruct preparedness. We present a model of family preparedness for transitions in the PICU based on semistructured interviews with clinicians and families that is designed to improve family centered care through the reduction of failed or traumatic transitions. METHOD: We conducted semistructured interviews with 20 clinicians and 25 families in an academic PICU. Transcript analysis focused on identifying factors facilitating or obstructing family preparedness for care transitions. We analyzed interview transcripts for emergent themes and metathemes using grounded theory methodology. RESULTS: Family preparedness for care transitions is dependent upon both cognitive and emotional preparedness. Six metathemes form a novel model for understanding the factors influencing both components of preparedness and their interrelationship. Specifically, family preparedness is influenced by (a) individualized backgrounds, coping skills, and support systems as well as the (b) emotional context, (c) care environment, (d) course of care, (e) content of preparatory information, and (f) manner in which care is coordinated to effectively deliver information. We also describe 10 transitional categories that provide context for application of the model. DISCUSSION: Cognitive and emotional preparedness for care transitions in the PICU develops through attentiveness to six features. The conceptual model presented here will allow clinicians to support family centered care through interventions to facilitate a shared development of expectations for the future and reduce the risk of failed or traumatic transitions. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Transition Planning Among US Youth With and Without Special Health Care Needs.

BACKGROUND: Researchers have shown that most youth with special health care needs (YSHCN) are not receiving guidance on planning for health care transition. This study examines current transition planning among US youth with and without special health care needs (SHCN). METHODS: The 2016 National Survey of Children's Health is nationally representative and includes 20 708 youth (12-17 years old). Parents and/or caregivers were asked if transition planning occurred, based on the following elements: (1) doctor or other health care provider (HCP) discussed the eventual shift to an HCP who cares for adults, (2) an HCP actively worked with youth to gain self-care skills or understand changes in health care at age 18, and (3) youth had time alone with an HCP during the last preventive visit. Sociodemographic and health system characteristics were assessed for associations with transition planning. RESULTS: Nationally, 17% of YSHCN and 14% of youth without SHCN met the overall transition measure. Older age (15-17 years) was the only sociodemographic factor associated with meeting the overall transition measure and individual elements for YSHCN and youth without SHCN. Other sociodemographic characteristics associated with transition planning differed among the 2 populations. Receipt of care coordination and a written plan was associated with transition planning for YSHCN. CONCLUSIONS: This study reveals that few youth with and without SHCN receive transition planning support. It underscores the need for HCPs to work with youth independently and in collaboration with parents and/or caregivers throughout adolescence to gain self-care skills and prepare for adult-focused care.