The Indian Academy of Pediatrics and Directorate General of Health Services, Government of India White Paper on Transition of Care for Youth with Special Health Care Needs.

Over the years, survival of children with chronic diseases has significantly improved and a large proportion of them now are entering into adulthood. Transition of Care (ToC) of such patients with having childhood onset of chronic diseases to the adult health care system is well organized in developed countries, although it is an emerging concept in India. In situations where the systems for ToC are not in place, such cases are fraught with unsatisfactory health outcomes. With proper ToC in place, these patients are likely to receive uninterrupted care by the adult care physicians and hence reach their full potential. This document highlights the need, rationale and way forward for ToC of youth with special health care needs (YSHCN) across the country. It also describes the standard operating procedures to develop the ToC at a hospital level for clinicians and administrators.

Transition of Adolescents With Severe Asthma From Pediatric to Adult Care in Spain: The STAR Consensus

Objective: To assess the degree of consensus 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 diseases, covering transition planning, preparation, effective transfer, and follow-up. A 2-round Delphi process assessed the degree of consensus among 98 experts (49 pediatricians, 24 allergists, and 25 pulmonologists). Consensus was established with ≥70% agreement. Results: Consensus was reached for 42 items (70%). Panelists were unable to agree on an age range for initiation of transition. The main goal during the transition identified by the experts is for adolescents to gain autonomy in managing severe asthma and prescribed treatments. The panelists agreed on the importance of developing an individualized plan, promoting patient autonomy, and identifying factors associated with the home environment. They agreed that the adult health care team should have expertise in severe asthma, biologics, and management of adolescent patients. Pediatric and adult health care teams should share clinical information, agree on the criteria for maintaining biological therapy, and have an on-site joint visit with the patient before the effective transfer. Adult health care professionals should closely follow the patient after the effective transfer to ensure correct inhaler technique, adherence, and attendance at health care 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 (AU)

Objetivo: Evaluar el grado de consenso con un panel multidisciplinar de expertos sobre la transición del adolescente con asma grave de los servicios de pediatría a atención de adultos. Métodos: Se elaboró un cuestionario de 61 ítems basado en recomendaciones de transición para otras patologías crónicas, abarcando la planificación de la transición, preparación, transferencia efectiva y seguimiento. Se evaluó el nivel de consenso entre 98 expertos (49 pediatras, 24 alergólogos y 25 neumólogos) mediante un proceso Delphi de dos rondas. El consenso se estableció con un acuerdo ≥70%. Resultados: Cuarenta y dos ítems (70%) alcanzaron consenso. Los panelistas no alcanzaron consenso en el rango de edad para iniciar la transición. El principal objetivo a conseguir durante la transición según los expertos fue que el adolescente gane autonomía en el manejodel asma grave y tratamientos prescritos. Asimismo, alcanzaron acuerdo en la importancia de desarrollar un plan individualizado, promover la autonomía del paciente e identificar los factores clave en el entorno familiar. Los especialistas de adultos deben tener experiencia en asma grave y tratamientos biológicos, así como en el manejo de pacientes adolescentes. Los equipos sanitarios de pediatría y de adultos deben compartir la información clínica, consensuar los criterios para mantener la terapia biológica y realizar una visita conjunta con el paciente antes de la transferencia. Los especialistas de adultos deben realizar un seguimiento estrecho del paciente tras la transferencia para asegurar una correcta técnica inhalatoria, el cumplimiento del tratamiento y la asistencia a las citas sanitarias. Conclusiones: Este documento de consenso proporciona la primera hoja de ruta en España para que los equipos especialistas de pediatría y adultos garanticen aspectos clave del proceso de transición en pacientes adolescentes con asma grave. La aplicación de estas (AU)

Health Care Transition From Pediatric- to Adult-Focused Care in X-linked Hypophosphatemia: Expert Consensus.

CONTEXT: X-linked hypophosphatemia (XLH) is an inherited skeletal disorder that can lead to lifelong deleterious musculoskeletal and functional consequences. Although often perceived as a childhood condition, children and adults both experience the negative effects of XLH. Adolescents and young adults (AYAs) benefit from effective health care transition (HCT) preparation to support the transfer from pediatric- to adult-focused care. Whereas transition timelines, milestones, and educational tools exist for some chronic conditions, they do not meet the unique needs of patients with XLH. EVIDENCE ACQUISITION: To produce the first expert recommendations on HCT preparation for AYAs with XLH developed by clinical care investigators and transition experts, a formal literature search was conducted and discussed in an advisory board meeting in July 2020. A modified Delphi method was used to refine expert opinion and facilitate a consensus position. EVIDENCE SYNTHESIS: We identified the need for psychosocial and access-related resources for disease education, genetic counseling, family planning, and AYA emancipation from caregiver-directed care. Additionally, we recognized that it is necessary to facilitate communication with patients through channels familiar and accessible to AYAs and teach patients to advocate for their health care/access to specialists. CONCLUSION: Clear HCT preparation guidelines and treatment-related goals are defined. Individualized timelines and practical strategies for HCT preparation are proposed to optimize health outcomes resulting from continuous clinical care throughout the patient lifecycle. We provide an expert consensus statement describing a tailored HCT preparation program specifically for AYAs with XLH to aid in the effective transfer from pediatric- to adult-focused health care.

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.

A qualitative study of risk and resilience in young adult women with a history of juvenile-onset fibromyalgia.

BACKGROUND: Juvenile-onset Fibromyalgia (JFM) is a chronic pain condition characterized by widespread musculoskeletal pain, fatigue, sleep difficulties, mood concerns, and other associated symptoms. Although diagnosed in childhood, JFM often persists into adulthood can result in continued physical, social, and psychological impairment. The purpose of this qualitative study was to identify themes of risk and resilience for long-term outcomes among young adults diagnosed with JFM in childhood. METHODS: The sample included 13 young adults (ages 26-34) who had been diagnosed with JFM in adolescence. Focus groups were used to elicit qualitative information about living with JFM and perceived challenges and buffering factors impacting their adjustment. RESULTS: The majority of participants (80%, N = 12) continued to meet criteria for fibromyalgia (FM). An iterative, thematic analysis revealed themes of resilience (e.g., greater acceptance, re-setting expectations, active coping, addressing mental health) and risk (e.g., lack of information, stigma, isolation, negative healthcare experiences). CONCLUSION: Results suggest the need for longer follow-up of youth with JFM as they transition to adulthood with multidisciplinary care and more attention to education about JFM and associated symptoms such as fatigue, as well as ongoing support for coping and mental health needs. A holistic approach to care during the transition years could be beneficial to minimize impact of JFM on long-term functioning.

Transitioning patients with developmental disabilities to adult care.

The pre-visit questionnaire, instructive videos, and Web resources detailed here can help you play a pivotal role in planning, commencing, and solidifying this transition.

Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey.

BACKGROUND: Despite the risk for poor outcomes and gaps in care in the transfer from pediatric to adult care, most pediatric rheumatology centers lack formal transition pathways. As a first step in designing a pathway, we evaluated preparation for transition in a single-center cohort of adolescents and young adults (AYA) with rheumatologic conditions using the ADolescent Assessment of Preparation for Transition (ADAPT) survey. FINDINGS: AYA most frequently endorsed receiving counseling on taking charge of their health and remembering to take medications. Less than half reported receiving specific counseling about transferring to an adult provider. AYA with lower education attainment compared with those who had attended some college or higher had lower scores in self-management (1.51 vs 2.52, p = 0.0002), prescription medication counseling (1.96 vs 2.41, p = 0.029), and transfer planning (0.27 vs 1.62, p < 0.001). AYA with a diagnosis of MCTD, Sjögren's or SLE had higher self-management scores than those with other diagnoses (2.6 vs 1.9; p = 0.048). Non-white youth indicated receiving more thorough medication counseling than white youth (2.71 vs 2.07, p = 0.027). When adjusting for age, educational attainment remained an independent predictor of transfer planning (p = 0.037). AYA with longer duration of seeing their physician had higher transition preparation scores (p = 0.021). CONCLUSION: Few AYA endorsed receiving comprehensive transition counseling, including discussion of transfer planning. Those who were younger and with lower levels of education had lower preparation scores. A long-term relationship with providers was associated with higher scores. Further research, including longitudinal assessment of transition preparation, is needed to evaluate effective processes to assist vulnerable populations.

The importance of transition from pediatric to adult rheumatology care in juvenile idiopathic arthritis.

Introduction: Juvenile idiopathic arthritis (JIA) is the most common rheumatic inflammatory condition in childhood. The long-term morbidity, mortality, and quality of life have improved with the earlier use of disease-modifying drugs (DMARDs) and the availability of biology disease-modifying drugs (bDMARDs). Despite the improvement of treatment, around 50% of the patients reach adulthood with articular and/or extra articular disease activity. A careful planned transition from pediatric to adult care is necessary to reduce the loss of follow-up that is associated with stopping medications, flares, and disability due to untreated arthritis or uveitis.Areas covered: This narrative review provides an overview of the importance of transition in JIA Articles were selected from Pubmed searches.Expert opinion: JIA patients, family, and healthcare workers have to be trained to provide an effective transition plan, based on local and national policies. Important aspects such as expectations, maturation, disease characteristics, disease activity, adherence, disability, and psychological aspects among others have to be considered and addressed during the transition phase to improve self-esteem, self-assurance, and quality of life.

The readiness of pediatric rheumatology patients and their parents to transition to adult-oriented treatment.

INTRODUCTION: Transition is a planned process of pediatric patients from child-centered to adult-oriented treatment. Transitional care for patients with chronic diseases is essential. The present study aimed to evaluate the readiness of patients with rheumatic diseases and their parents for transition process. METHOD: This is a cross-sectional, single-center study. All patients and their parents were questioned about their awareness of and willingness to undergo transitional care. Transition Readiness Assessment Questionnaire (TRAQ) was applied to all the participants. TRAQ is a tool for measuring readiness for transitional care in adolescents with chronic diseases. TRAQ includes 20 items that are divided into 2 domains: self-management and self-advocacy. RESULTS: A total of 157 (87 girls/70 boys) patients and their parents were enrolled. Of them 64 were diagnosed with familial Mediterranean fever, 52 with juvenile idiopathic arthritis, 21 with systemic lupus erythematosus, and 20 with Behçet's disease. The median age of the patients was 16 years (15-18). However, all patients and parents accepted that transition to adult-oriented care is necessary; only one-third of them were aware about transitional care. Eighty (50.9%) patients and 147 (93.6%) of the parents stated that they were wishing to continue pediatric rheumatology treatment. The mean TRAQ self-management domain and self-advocacy domain total scores in the patients were 1.76 ± 0.51 and 1.72 ± 0.49, respectively (P = .48). The mean TRAQ total score was not different between patients and parents. When we assessed the factors affecting transition process, the TRAQ score was lower among patients with active disease, and requiring hospitalization during the previous year. CONCLUSION: Assessment od the readiness of patients with chronic rheumatic diseases for transition care will increase the awareness of patients and their parents as well, and provide determination of the optimal time for transition.

The basics of transition in congenital lifelong urology.

PURPOSE: Transition in urology is defined by the process that allows an adolescent or a young adult with a congenital or acquired urogenital anomaly to assume increasing responsibility for their own health care and to become the primary decision maker in their care. METHODS: A review of the literature regarding transitional care for lifelong urologic congenital anomalies was performed with the aim of reporting expert opinion when data are non-existent. This review focuses on special considerations for adolescents and young adults with spina bifida, bladder exstrophy, anorectal malformations and differences of sexual development. RESULTS: Urologic goals during the transition from childhood to adulthood continue to include attention to the preservation of renal function and optimization of lower urinary tract function. Additional concerns include care to decrease long-term surgical complications (especially after augmentation cystoplasty), to monitor for malignancy, to prepare for sex activity and fertility, and to help the adult patient in decision making. Transition aims to maximize quality of life and independence by ensuring uninterrupted appropriate care through a multidisciplinary approach which varies by geographical location and healthcare setting. Barriers include patient and family factors as well as provider and system related factors. A dedicated team is an important element of successful transition.

An assessment of the continuing medical education needs of US physicians in the management of patients with beta thalassemia.

Patients with beta thalassemia are benefitting from longer life expectancies, highlighting the importance of appropriate transition from pediatric to adult care. Data are limited regarding continuity of care and adult hematologists' management of patients with beta thalassemia. We conducted a survey of practicing US hematologists to identify practice gaps, attitudes, and barriers to optimal patient management among US-practicing hematologists. A total of 42 responses were collected, with 19 (45%) practicing at a beta thalassemia center of excellence (CoE). Nearly 90% of CoE physicians said they had a transition protocol or plan in place versus 30% of non-CoE physicians. Most physicians said parents should remain actively involved in medical visits. Adherence was rated as the most important patient education topic during transition. The most significant barrier cited was patient reluctance to transition away from pediatric care. Physicians in CoEs as compared with non-CoE physicians reported greater knowledge of beta thalassemia and familiarity with butyrates, gene therapy, and luspatercept. Highly rated topics for beta thalassemia-focused CME activities included management of complications and clinical trial updates. These findings suggest practice gaps and barriers to optimal care in the transition from pediatric to adult care, the ongoing management of adult patients, knowledge of the disease state, and familiarity with emerging treatments. Differences CoE vs non-CoE physician responses suggest variations in knowledge, practice, and attitudes that may be helpful in tailoring CME activities to different learner audiences. The small sample size used in some sub-analyses may not be representative of all hematologists treating beta thalassemia patients.

Mobile applications for emerging adults transitioning to independent diabetes monitoring.

Access to high-quality mhealth tools for diabetes management is critical. The purpose was to systematically review mobile apps for features relevant to helping emerging adults manage their diabetes as they transition to independent diabetes monitoring. Mobile apps were reviewed for relevance to emerging adults, aged 18-25, living with diabetes. The GooglePlay store was systematically searched to identify diabetes management mobile tools. Of the 29 apps, only one app had any features relevant to emerging adults. In total, 20 apps had a feature to share a copy of diet or blood sugar logs with a family member or provider. Only 9 apps had any interactivity other than tracking. While most apps had graphics, only 5 were deemed high quality. Just one app met all three included Mobile Application Rating Scale (MARS) criteria. This review serves as a starting point to guide educators and patients, especially to aid continuity of care when in-person support is not feasible. Ongoing review of new apps with improved functionality and effectiveness studies of the apps' impact on emerging adults' diabetes management is imperative.

Congenital Hypothyroidism: A 2020-2021 Consensus Guidelines Update-An ENDO-European Reference Network Initiative Endorsed by the European Society for Pediatric Endocrinology and the European Society for Endocrinology.

Background: An ENDO-European Reference Network (ERN) initiative was launched that was endorsed by the European Society for Pediatric Endocrinology and the European Society for Endocrinology with 22 participants from the ENDO-ERN and the two societies. The aim was to update the practice guidelines for the diagnosis and management of congenital hypothyroidism (CH). A systematic literature search was conducted to identify key articles on neonatal screening, diagnosis, and management of primary and central CH. The evidence-based guidelines were graded with the Grading of Recommendations, Assessment, Development and Evaluation system, describing both the strength of recommendations and the quality of evidence. In the absence of sufficient evidence, conclusions were based on expert opinion. Summary: The recommendations include the various neonatal screening approaches for CH as well as the etiology (also genetics), diagnostics, treatment, and prognosis of both primary and central CH. When CH is diagnosed, the expert panel recommends the immediate start of correctly dosed levothyroxine treatment and frequent follow-up including laboratory testing to keep thyroid hormone levels in their target ranges, timely assessment of the need to continue treatment, attention for neurodevelopment and neurosensory functions, and, if necessary, consulting other health professionals, and education of the child and family about CH. Harmonization of diagnostics, treatment, and follow-up will optimize patient outcomes. Lastly, all individuals with CH are entitled to a well-planned transition of care from pediatrics to adult medicine. Conclusions: This consensus guidelines update should be used to further optimize detection, diagnosis, treatment, and follow-up of children with all forms of CH in the light of the most recent evidence. It should be helpful in convincing health authorities of the benefits of neonatal screening for CH. Further epidemiological and experimental studies are needed to understand the increased incidence of this condition.

Systematic Review of Factors Affecting Transition Readiness Skills in Patients with Inflammatory Bowel Disease.

BACKGROUND AND AIMS: The incidence of inflammatory bowel disease [IBD] diagnosed before adulthood is increasing worldwide. Transition from paediatric to adult health care requires certain skills. The aim of this study was to identify factors affecting these skills. METHODS: This review was registered on the PROSPERO database [CRD42019152272]. Inclusion criteria were: 1] studies of factors affecting transition readiness skills in patients with IBD; 2] written in English; 3] published since 1999. MEDLINE, CINAHL, and PsychINFO databases were searched between 1999 and 2019. Quality was assessed using the Joanna Briggs Institute critical appraisal tools. RESULTS: Searches identified 822 papers. Sixteen papers were included. Age was positively associated with skills including disease knowledge and performing self-management behaviours [14 studies]. Improvement often occurs at 18; however, skill deficiency may still remain. Increased self-efficacy [confidence] was associated with greater disease knowledge and performing self-management behaviours [three studies]. Self-efficacy was positively correlated with transition duration [two studies] and health-related quality of life [r = 0.57, p <0.001] [one study], negatively correlated with depression [r = -0.57, p <0.001] and anxiety [r = -0.23, p = 0.03] [one study], and was associated with higher education level [two studies] and a family history of IBD [one study]. Females had higher self-management scores [three studies], and greater health care satisfaction was significantly associated with higher knowledge [one study]. Greater transition communication improved knowledge, self-management, and overall transition readiness [two studies]. CONCLUSIONS: Potentially modifiable factors have been identified that could be supported in the transitioning IBD population, to improve transition readiness. Identification of those with non-modifiable characteristics associated with poor readiness may aid targeted support.

Ready or not? Greater readiness for independent self-care predicts better self-management but not HbA1c in teens with type 1 diabetes.

OBJECTIVE: Prior to the transfer from paediatric to adult health care transition, teens with type 1 diabetes seek increasing independence in diabetes self-care while parent involvement in care decreases. Yet, few teens attain glycaemic targets. This study aimed to assess changes in perceived readiness for independent self-care in teens with type 1 diabetes over 18 months, from both teens' and parents' perspectives, and to evaluate its predictive value for diabetes self-management and haemoglobin A1c (HbA1c ). RESEARCH DESIGN AND METHODS: At baseline, 6, 12 and 18 months, 178 teens with type 1 diabetes (mean ± SD age 14.9±1.3 years; HbA1c 8.5 ± 1.0% (69 ± 11 mmol/mol); 48% female) and their parents completed the Readiness for Independent Self-Care Questionnaire (RISQ-T and RISQ-P, respectively) and a measure of self-management. Chart review provided HbA1c values. Statistical analyses encompassed bivariate correlations, paired t-tests and multivariable longitudinal mixed models. RESULTS: Teens perceived greater self-care readiness than their parents at baseline and over 18 months of follow-up. Both teen and parent perceptions of teen readiness for independent self-care increased over time, and significantly predicted higher teen self- and parent proxy-reported teen diabetes self-management, respectively, but not improved HbA1c . CONCLUSIONS: The current findings may point to a disconnect between how increased readiness for independent self-care may translate into better perceived diabetes self-management, but not into better HbA1c . In an effort to optimize HbA1c in teens with type 1 diabetes, future research is needed to design interventions that align perceived readiness for independent self-care with self-care behaviours that improve HbA1c .

Practical Tools to Monitor and Evaluate Transition.

The success of transition for children and youth with neurological disorders depends on leadership from the pediatric neurology team to encourage and support the patient's firm knowledge base of the medical condition, gradual acceptance of self-management skills and confident self-advocacy. While the foundations of effective medical transition have been effectively outlined, the challenge remains to translate from principles to practice. The Child Neurology Foundation has published open source, practical guides which are designed to facilitate the ability to structure and monitor the process through adolescence as well as to insure an effective transfer of care to adult providers. In addition, this article provides one hospital;'s efforts to integrate the transition process into the electronic medical record.

Transición de la atención en salud mental infantil y adolescentes a la atención en adultos: un desafío no resuelto y una oportunidad / Transitioning from the child and adolescent to the adult mental health services: an unresolved challenge and an opportunity

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