Healthy transition: Roadmap for young adults with Down syndrome to adulthood.

Healthcare transition is the purposeful and planned process for preparing young adults with Down syndrome for an adult oriented healthcare system. Significant gaps of a delayed, incomplete, siloed and decentered transition can be avoided when transition is approached in a longitudinal and holistic manner. Young adults with Down syndrome are specifically vulnerable to these gaps as the combination of intellectual differences and healthcare complexity leads to the need for a process that allows for appropriate preparation to develop the skills and process for an appropriate. To establish a successful transition care plan, the six core elements of policy, tracking, readiness, planning, transfer of care, and complete transition will compose the scaffolding of the transition process and address these gaps in care. A comprehensive tool kit including policy statements, healthcare transition tracking forms, the TRAQ tool, and template portable medical summaries will operationalize those elements and counteract any gaps in the transition process.

ERS statement on transition of care in childhood interstitial lung diseases.

Interstitial lung diseases (ILD) are a heterogeneous group of rare diffuse diseases affecting the lung parenchyma in children and adults. Childhood interstitial lung diseases (chILD) are often diagnosed at very young age, affect the developing lung, and can have different presentations and prognosis compared to adult forms of these diseases. In addition, chILD in many cases may apparently remit, and have a better response to therapy and better prognosis than adult ILD. Many affected children will reach adulthood with minimal activity or clinical remission of the disease. They need continuing care and follow-up from childhood to adulthood if the disease persists and progresses over time, but also if they are asymptomatic and in full remission. Therefore, for every chILD patient an active transition process from paediatric to adult care should be guaranteed. This European Respiratory Society (ERS) statement provides a review of the literature and current practice concerning transition of care in chILD. It draws on work in existing transition care programmes in other chronic respiratory diseases, disease-overarching transition-of-care programmes, evidence on the impact of these programmes on clinical outcomes, current evidence regarding long-term remission of chILD as well as the lack of harmonisation between the current adult ILD and chILD classifications impacting on transition of care. While the transition system is well established in several chronic diseases, such as cystic fibrosis or diabetes mellitus, we could not find sufficient published evidence on transition systems in chILD. This statement summarises current knowledge, but cannot yet provide evidence-based recommendations for clinical practice.

The impact of health literacy on adolescent and young adult pediatric liver transplant recipients.

Pediatric liver transplant recipients have increased rates of morbidity and mortality following transfer to adult health care providers. The role of health literacy (HL) has not been adequately assessed in this population and may be an unrecognized barrier to successful health care transition. We sought to determine the impact of HL for patients and their caregivers on measures of transition readiness (TR), adherence, health-related quality of life, and medical outcomes following pediatric liver transplant. This is a single-center study of pediatric liver transplant recipients transplanted between the ages of 12 and 26 from October 2016 through August 2020. Patients and caregivers completed 4 surveys to evaluate TR, health-related quality of life, and HL. Clinical outcomes were stratified based on the presence or absence of adequate HL. Limited HL was identified in 57.0% of recipients and 47.4% of caregivers. Patients with limited HL were more likely to be younger in age ( p = 0.004), Hispanic ( p = 0.003), and less likely to have obtained a high school diploma or equivalent ( p < 0.001). Patients with adequate HL demonstrated significantly higher levels of TR ( p < 0.001). Patient HL did not impact health-related quality of life, adherence, or medical outcomes. Caregiver HL did not impact patient outcomes or adherence, though higher levels of caregiver education were associated with adequate patient HL ( p = 0.049). This study demonstrates that limited HL is associated with decreased measures of TR. Inadequate HL may be an unrecognized barrier to a successful health care transition. Regular assessment of HL may provide an opportunity for intervention prior to transfer of care. Future studies should investigate the impact of these interventions on long-term medical outcomes.

Predictors of Transition Outcomes in Cystic Fibrosis: Analysis of National Patient Registry and CF RISE (Responsibility. Independence. Self-care. Education) Data.

OBJECTIVE: To identify predictors of change in lung function and body weight during health care transition in cystic fibrosis (CF). METHODS: We conducted a retrospective cohort study using data from the CF Foundation Patient Registry and the web-based transition program CF RISE (Responsibility. Independence. Self-care. Education) for patients aged 16-25 years who transitioned to adult care from 2013 through 2019. We modeled change in forced expiratory volume in 1 second % predicted and weight using linear regression fit with generalized estimating equations. Predictors included gap in care (time between last pediatric and first adult outpatient visit), transition program engagement, and sociodemographic and medical factors. RESULTS: Among 12 420 adolescents and young adults (AYAs), 3876 transitioned to adult care with a median gap in care of 7.6 months. Patients from CF centers with greater rates of CF RISE engagement had improved lung function and weight at their first adult outpatient visit. Coverage on a parent's insurance plan and absence of CF complications predicted increased lung function. History of a nonlung transplant and sinus disease predicted increased weight. Comorbid diabetes mellitus and gaps in care >3 months predicted decreased lung function with longer gaps in care associated with greater decrease. A gap in care of 6-9 months predicted decreased weight. Control variables including baseline forced expiratory volume in 1 second and weight, and exacerbation status were also statistically significant. CONCLUSIONS: Findings suggest 2 promising targets to improve transition of AYAs with CF: increasing AYA engagement in CF RISE and reducing gaps in care during the transition period.

Resource use and costs of transitioning from paediatric to adult care for patients with chronic endocrine disease.

OBJECTIVE: Structured transition of adolescents and young adults with a chronic endocrine disease from paediatric to adult care is important. Until now, no data on time and resources required for the necessary components of the transition process and the associated costs are available. DESIGN, PATIENTS AND MEASUREMENTS: In a prospective cohort study of 147 patients with chronic endocrinopathies, for the key elements of a structured transition pathway including (i) assessment of patients' disease-related knowledge and needs, (ii) required education and counselling sessions, (iii) compiling an epicrisis and a transfer appointment of the patient together with the current paediatric and the future adult endocrinologist resource consumption and costs were determined. RESULTS: One hundred and forty-three of 147 enroled patients (97.3%) completed the transition pathway and were transferred to adult care. The mean time from the decision to start the transition process to the final transfer consultation was 399 ± 159 days. Transfer consultations were performed in 143 patients, including 128 patients jointly with the future adult endocrinologist. Most consultations were performed by a multidisciplinary team consisting of a paediatric and adult endocrinologist, psychologist, nurse, and a social worker acting also as a case manager with a median of three team members and lasted 87.6 ± 23.7 min. The mean cumulative costs per patient of all key elements were 519 ± 206 Euros. In addition, costs for case management through the transition process were 104.8 ± 28.0 Euros. CONCLUSIONS: Using chronic endocrine diseases as an example, it shows how to calculate the time and cost of a structured transition pathway from paediatric to adult care, which can serve as a starting point for sustainable funding for other chronic rare diseases.

Characteristics and End-of-Life Care Pathways of Decedents From a National Cohort of Assisted Living Residents.

BACKGROUND: Assisted living (AL) is an increasingly common, place of care for dying persons. However, it remains unclear to what extent residents are able to age in place or if AL represents an additional transition before death. OBJECTIVES: Examine the sociodemographic characteristics, comorbidities, health care utilization, and end-of-life care pathways of AL residents before death. RESEARCH DESIGN: A national cohort study of fee-for-service Medicare beneficiaries residing in large AL communities (25+ beds) during the month of January 2017 with 3 years of follow-up, using administrative claims data. SUBJECTS: 268,812 AL residents. MEASURES: Sociodemographic characteristics, comorbidities, and health care utilization at the end of life. RESULTS: Between 2017 and 2019, 35.1% of the study cohort died. Decedents were more likely than the overall AL population to be 85 years old or older (76.5% vs. 59.5%), and diagnosed with Alzheimer's disease and related dementia (70.3% vs. 51.6%). Most decedents (96.2%) had some presence in AL during the last year of life, but over 1 in 5 left AL before the last month of life. Among those in AL on day 30 before death, nearly half (46.4%) died in place without any health care transition, while 13.2% had 3 or more transfers before dying. CONCLUSIONS: AL is an important place of care for dying persons, especially for those with dementia. These findings indicate a need to assess existing policies and processes guiding the care of the frail and vulnerable population of dying AL residents.

Establishing consensus recommendations for long-term osteoporosis care for patients who have attended an Australian fracture liaison service: a Delphi study.

Coordinating healthcare activities between fracture liaison services (FLS) and primary care is challenging. Using a Delphi technique, we developed 34 consensus statements to support improved care coordination across this healthcare transition. PURPOSE: Evidence supporting an optimal coordination strategy between fracture liaison services (FLS) and primary care is lacking. This study aimed to develop consensus statements to support consistency and benchmarking of clinical practice to improve coordination of care for patients transitioning from FLS to primary care following an osteoporotic fracture. METHODS: A Delphi technique was used to develop consensus among a panel of experts, including FLS clinicians (medical and non-medical), general practitioners (GPs), and consumers. RESULTS: Results of a preparatory questionnaire (n = 33) informed the development of 34 statements for review by expert panellists over two Delphi rounds (n = 25 and n = 19, respectively). The majority of participants were from New South Wales (82%), employed as FLS clinicians (78.8%) and working in metropolitan centres (60.6%). Consensus was achieved for 24/34 statements in round one and 8/10 statements in round two. All statements concerning patient education, communication, and the GP-patient relationship achieved consensus. Expert opinions diverged in some areas of clinician roles and responsibilities and long-term monitoring and management recommendations. CONCLUSION: We found clear consensus among experts in many key areas of FLS integration with primary care. While experts agreed that primary care is the most appropriate setting for long-term osteoporosis care, overall confidence in primary care systems to achieve this was low. The role of (and responsibility for) adherence monitoring in a resource-limited setting remains to be defined.

Diabetes duration, perceived comfort with self-management and glycaemic control in adolescents with type 1 diabetes: A cross-sectional study.

AIMS: Evidence is lacking on whether diabetes duration is associated with type 1 diabetes (T1D) self-management during late adolescence before transfer from paediatric to adult care. We examined associations of diabetes duration with dimensions of perceived comfort with diabetes self-management (self-efficacy, transition readiness, diabetes distress) and glycaemic control in late adolescence. METHODS: Using a cross-sectional design, we conducted a secondary analysis of baseline data of adolescents (ages 16-17 years) with T1D followed at paediatric diabetes academic hospitals in Montreal and enrolled in the Group Education Trial to Improve Transition (GET-IT-T1D). Participants completed validated questionnaires on self-efficacy (Self-Efficacy for Diabetes Self-Management Measure [SEDM], score 1 to 10), diabetes distress and transition readiness, as well as a haemoglobin (HbA1c) capillary blood test. Our primary outcome was self-efficacy. We examined associations of diabetes duration with self-efficacy, diabetes distress, transition readiness and HbA1c using linear and logistic regression models adjusted for sex, socioeconomic status, insulin pump use, glucose sensor use and psychiatric comorbidity. RESULTS: Of 203 adolescents with T1D, mean diabetes duration (SD) was 7.57 (4.44) years. Mean SEDM score was 6.83 (SD 1.62). Diabetes duration was not associated with self-efficacy, diabetes distress or transition readiness. Each additional year of diabetes duration was associated with 0.11% (95% CI, 0.05 to 0.16) higher HbA1c. CONCLUSIONS: Although diabetes duration is not associated with dimensions of perceived comfort with diabetes self-management, adolescents with longer diabetes duration are at risk for higher HbA1c and may need additional support to improve glycaemic control before transition to adult care.

Association of stigma, diabetes distress and self-efficacy with quality of life in adolescents with type 1 diabetes preparing to transition to adult care.

AIMS: In type 1 diabetes (T1D), psychosocial factors may impact quality of life (QOL) and clinical outcomes, but remain understudied, particularly during late adolescence. Our aim was to determine whether stigma, diabetes distress and self-efficacy are associated with QOL in adolescents with T1D as they are preparing to transition to adult care. METHODS: We conducted a cross-sectional study of adolescents (ages 16-17 years) with T1D participating in the Group Education Trial to Improve Transition (GET-IT) in Montreal, Canada. Participants completed validated questionnaires on stigma using the Barriers to Diabetes Adherence (BDA) stigma subscale, self-efficacy (Self-Efficacy for Diabetes Self-Management Measure [SEDM], score 1-10), diabetes distress (Diabetes Distress Scale for Adults with type 1 diabetes) and QOL (Pediatric Quality of Life Inventory [PedsQL] 4.0 Generic Core Scale and PedsQL 3.2 Diabetes Module). We examined associations of stigma, diabetes distress and self-efficacy with QOL using multivariate linear regression models adjusted for sex, diabetes duration, socioeconomic status and HbA1c. RESULTS: Of 128 adolescents with T1D, 76 (59%) self-reported having the diabetes-related stigma and 29 (22.7%) reported experiencing diabetes distress. Those with stigma had lower diabetes-specific and general QOL scores compared with those without stigma, and stigma and diabetes distress were both associated with lower diabetes-specific QOL and lower general QOL. Self-efficacy was associated with higher diabetes-specific and general QOL. CONCLUSIONS: Stigma and diabetes distress are associated with lower QOL, whereas self-efficacy is associated with higher QOL in adolescents with T1D preparing to transfer to adult care.

Transition from Paediatric to Adult Care in CAH: 20 Years of Experience at a Tertiary Referral Center.

Transition medicine aims at the coordinated transfer of young patients with a chronic disease from paediatric to adult care. The present study reflects 20 years of experience in transitioning patients with congenital adrenal hyperplasia (CAH) in a single center setting. Our endocrine transition-clinic was established in 2002 and offers joint paediatric and adult consultations. Data were evaluated retrospectively from 2002 to 2005 and 2008 to present. Fifty-nine patients (29 males) were transferred. Median age was 18.4 years (17.6-23.6). Ninety percent of the patients presented with 21-hydroxlase-deficiency (21-OHD), 38 patients (23 m) with salt-wasting (sw), 7 (1 m) with simple-virilising (sv) and 8 (3 m) with the non-classic (nc) form. Rarer enzyme deficiencies were found in 6 cases: 17α-OHD (2 sisters), P450-oxidoreductase-deficiency (2 siblings), 3ß-hydroxysteroid-dehydrogenase-deficiency (1 m) and 11ß-OHD (1 female). Thirty-four patients (57.6%, 20 m) are presently still attending the adult clinic, 1 patient (1.7%, m) moved away and 24 (40.7%, 8 m) were lost to follow-up (13 sw-21-OHD, 6 sv-21-OHD, 5 nc-21-OHD). Thirty-seven patients (62.7%) attended the adult clinic for >2 years after transfer, 17 (28.8%) for >10 years. In the lost to follow-up group, median time of attendance was 16.3 months (0-195.2). Defining a successful transfer as two or more visits in the adult department after initial consultation in the transition clinic, transfer was efficient in 84.7% of the cases. A seamless transfer to adult care is essential for adolescents with CAH. It requires a continuous joint support during the transition period, remains challenging, and necessitates adequate funding.

The effectiveness of an education program based on healthcare transition in adolescents with asthma: A randomized controlled trial.

BACKGROUND: Adolescents diagnosed with asthma make a transition to adult care when they reach a certain age. Besides, these adolescents need specialized education for them to become autonomous, competent, and adult patients and gain the necessary knowledge and skills related to their disease. In this study, by using a prospective randomized controlled trial design, we evaluated the effectiveness of an education program based on healthcare transition provided to adolescents diagnosed with asthma. METHODS: After obtaining the consent of adolescents and their parents, 52 adolescents aged between 14 and 18 years who were diagnosed with asthma were randomly assigned to the intervention group (individual four face-to-face and six online education sessions) or the control group (standard care). The primary outcome was the differences between the Transition Readiness Assessment Questionnaire (TRAQ) scores of the two groups. The secondary outcomes included the differences between the Self-Efficacy Scale for Children and Adolescents with Asthma and Mind the Gap scores of the two groups. The outcomes were measured at two different time points: baseline (first assessment; Week 0) and immediately after the intervention (last assessment; Week 12). RESULTS: In the initial evaluations, there was no significant difference between the groups in terms of the primary or secondary outcomes (p > .05). In the final assessments, the TRAQ (Z = -4.740, p < .001) and Self-Efficacy Scale for Children and Adolescents with Asthma (t = 6.344, p < .001) scores of the intervention group were found to be significantly higher than the scores of the control group, while their Mind the Gap Scale scores were significantly lower (t = 6.146, p < .001). CONCLUSION: It was determined that the educational intervention integrated with pediatric care based on readiness for transition from pediatric care to adult care was effective in increasing the transition readiness and self-efficacy of the adolescents. The study was registered at ClinicalTrials.gov with the ID code NCT05550922.

Transitional Care in Patients With Hirschsprung Disease: Those Left Behind.

BACKGROUND: The long-term effects of Hirschsprung disease are clinically variable. An improved understanding of challenges patients may face as adults can help inform transitional care management. OBJECTIVE: To explore the outcomes and transitional care experiences in adult patients with Hirschsprung. DESIGN: Cohort study. SETTING: Single center. PATIENTS: All patients treated for Hirschsprung between 1977 and 2001 (aged older than 18 years at the time of survey distribution in July 2018-2019). Eligible patients were sent validated multidomain surveys and qualitative questions regarding their transitional care. MAIN OUTCOME MEASURES: Status of transitional care, bowel function, and quality-of-life assessment. Qualitative analysis of transitional care experience. RESULTS: Of 139 patients, 20 had received transition care (10 had at least 1 visit but had been discharged and 10 were receiving ongoing follow-up). These patients had inferior bowel function and quality-of-life scores at follow-up. Twenty-three patients (17%) had issues with soiling at the time of discharge, and 7 patients received transitional care. Of these 23 patients, 9 (39%) had a normal Bowel Function Score (17 or more), 5 (22%) had a poor score (less than 12), and 1 had since had a stoma formation. Eighteen patients (13%) had active moderate-severe issues related to bowel function, only 5 had been transitioned, and just 2 remained under ongoing care. Importantly, when these patients were discharged from our pediatric center, at a median age of 14 (interquartile range, 12-16) years, 10 of 17 patients had no perceptible bowel issues, suggesting a worsening of function after discharge. LIMITATIONS: The retrospective design and reliance on clinical notes to gather information on discharge status as well as patient recall of events. CONCLUSIONS: There remains a small but significant proportion of Hirschsprung patients for whom bowel function either remains or becomes a major burden. These results support a need to better stratify patients requiring transitional care and ensure a clear route to care if their status changes after discharge. See Video Abstract . ATENCIN DE TRANSICIN EN PACIENTES CON ENFERMEDAD DE HIRSCHSPRUNG, LOS QUE SE QUEDAN ATRS: ANTECEDENTES:Los efectos a largo plazo de la enfermedad de Hirschsprung son clínicamente variables. Una mejor comprensión de los desafíos que los pacientes pueden enfrentar cuando sean adultos puede ayudar a informar la gestión de la atención de transición.OBJETIVO:Explorar los resultados y las experiencias de atención de transición en pacientes adultos con Hirschsprung.DISEÑO:Estudio de cohorte.AJUSTE:Unico centro.PACIENTES:Todos los pacientes tratados por Hirschsprung 1977-2001 (edad >18 años en el momento de la encuesta, Julio de 2018-2019). A los pacientes elegibles se les enviaron encuestas multidominio validadas, así como preguntas cualitativas sobre su atención de transición.PRINCIPALES MEDIDAS DE RESULTADOS:Estado de la atención de transición, función intestinal y evaluación de la calidad de vida. Análisis cualitativo de la experiencia de cuidados transicionales.RESULTADOS:De 139 pacientes, 20 habían recibido atención de transición (10 tuvieron al menos una visita pero habían sido dados de alta y 10 estaban recibiendo seguimiento continuo). Estos pacientes tenían puntuaciones inferiores de función intestinal y calidad de vida en el seguimiento. Veintitrés (17%) pacientes tuvieron problemas para ensuciarse en el momento del alta y 7 recibieron atención de transición. De estos, 9/23 (39%) tenían una puntuación de función intestinal normal (≥17), 5/23 (22%) tenían una puntuación baja (<12) y un paciente había tenido desde entonces una formación de estoma. Dieciocho (13%) pacientes tenían problemas activos de moderados a graves relacionados con la función intestinal, solo cinco habían realizado la transición y solo 2 permanecían bajo atención continua. Es importante destacar que cuando estos pacientes fueron dados de alta de nuestro centro pediátrico, a una edad promedio de 14 [RIQ 12-16] años, 10/17 no tenían problemas intestinales perceptibles, lo que sugiere un empeoramiento de la función después del alta.LIMITACIONES:El diseño retrospectivo y la dependencia de notas clínicas para recopilar información sobre el estado del alta, así como el recuerdo de los eventos por parte del paciente.CONCLUSIÓN:Sigue existiendo una proporción pequeña pero significativa de pacientes con Hirschsprung para quienes la función intestinal permanece o se convierte en una carga importante. Estos resultados respaldan la necesidad de estratificar mejor a los pacientes que requieren atención de transición y garantizar una ruta clara hacia la atención si su estado cambia después del alta. ( Traducción-Dr. Yesenia Rojas-Khalil ).

The pervasive influence of systems of power on transition readiness for adult care in sickle cell disease: A qualitative study.

BACKGROUND: Adolescence and young adulthood are vulnerable developmental periods for individuals with sickle cell disease (SCD), particularly given the impact of social inequities, challenges with transitioning to adult healthcare services, and increased risk for morbidity and mortality. Systems of power, such as institutionalized and interpersonal manifestations of bias, could impact SCD transfer and engagement in adult care through their influence on healthcare transition readiness; yet research in this area is limited. OBJECTIVE: To characterize how systems of power impact transition readiness factors described in the Social-ecological Model of AYA Readiness for Transition to Promote Health Equity (SMART-E) framework at the patient, caregiver, and practitioner levels. METHODS: Pediatric adolescents and young adults (AYA), transferred AYA, caregivers, and practitioners participated in semi-structured focus groups and individual interviews examining health equity and systems of power during healthcare transition. Focus groups/interviews were transcribed and coded using a deductive approach via the updated SMART-E framework. RESULTS: Ten pediatric AYA with SCD, nine transferred AYA with SCD, eight caregivers, and nine practitioners participated in a focus group or interview. Qualitative findings across reporters emphasize the impact of systems of power (e.g., racial bias and disease stigma) on knowledge, skills and self-efficacy, beliefs and expectations, goals and motivation, and emotions and psychosocial functioning at the patient, caregiver, and practitioner levels. CONCLUSION: Systems of power are prevalent with respect to transition barriers for AYA with SCD and their supports. Structural, institutional, and individual factors with potential to reduce the influence of systems of power should be further identified and targeted for intervention.

Transition of adolescents living with HIV from pediatric to adult care, a retrospective 12-year Single Center Study from the Sahel Region in West-Africa.

ABSTRACTTransition is the next major hurdle in the field of HIV-infected youth, especially in sub-Saharan Africa. At St Camille Hospital in Ouagadougou, fully informed and compliant patients over 13-years-old were eligible for referral to the adult HIV/AIDS service, after completion of an individualized preparatory process. Transition consisted in at least two consecutive "joined-service" appointments in the respective facilities. We retrospectively compared immunological, clinical, and therapeutical data one year before transition, at transition and one year after transition. Between 2008 and 2019 73 patients (34 females, 39 males) were transitioned. All had been previously in pediatric care for at least 1 year and 66 were on HAART. Matched paired analysis of CD4 counts revealed a modest drop in CD4 cells over time (p < 0.05). Clinical data also showed strong fluctuation between WHO clinical stages over the three time points, with a clear trend towards increased severity especially post transfer. This large retrospective 12-year single-center experience from a Sahel country showed a 95.8% retention rate at one year. It demonstrates how a comprehensive plan, carefully implemented, can provide excellent retention, even in a low-resource setting. However, mild immunological decline was associated with a worrisome clinical deterioration, underlining the importance of assessing the latter after transition.

High mortality in adolescents and young adults with perinatally-acquired HIV in Thailand during the transition to adulthood.

Transitioning from pediatric to adult care remains a challenge for adolescents and young adults with perinatally-acquired HIV (AYA-PHIV). We assessed treatment outcomes and mortality among Thai AYA-PHIV. The study included AYA-PHIV who reached age 18-24 years who started antiretroviral treatment during childhood at five pediatric HIV clinics across Thailand. From November 2020-July 2021, data were gathered from a cohort database, medical records, and the Thai National AIDS Program. Of 811 eligible AYA-PHIV, 93% were alive; median age 22.3 years (IQR 20.6-23.7), treatment duration 16.1 years (IQR 13.4-18.0). Current HIV care was provided in adults (71%) and pediatric clinics (29%). Treatment regimens included non-nucleoside reverse transcriptase inhibitors (55%), protease inhibitors (36%), and integrase inhibitors (8%); 78% had HIV RNA <200 copies/ml. Of the 7.0% who died, median age at death was 20.8 years (IQR 20.6-22.1); 88% were AIDS-related death. Mortality after age 18 was 1.76 per 100-person years (95% confidence interval 1.36-2.28). Those with CD4 <200 cell/mm3 at age 15 had higher risk of mortality (adjusted hazard ratio 6.16, 95% CI 2.37-16.02). In conclusion, the high mortality among Thai AYA-PHIV indicated the need for better systems to support AYA-PHIV during the transition to adulthood.

Transition in enuresis patients: Identifying the gaps and opportunities for the future.

BACKGROUND: Nocturnal enuresis is generally considered a children's condition, yet it may persist 1%-2% in adolescence and early adulthood. Refractory patients often demand follow-up by multidisciplinary teams, which is only restricted to some of the expert tertiary centers. However, there are no standardized transition programs/guidelines when follow-up must be passed from pediatric to adult healthcare providers. AIM, MATERIALS & METHODS: To investigate this issue, we conducted a literature search on enuresis transition, which resulted in no articles. We, therefore, proceeded in a rescue search strategy: we explored papers on transition programs of conditions that may be related and/or complicated by enuresis, nocturia, or other urinary symptoms (chronic diseases, CKD, bladder dysfunction, kidney transplant, neurogenic bladder). RESULTS: These programs emphasize the need for a multidisciplinary approach, a transition coordinator, and the importance of patient and parent participation, practices that could be adopted in enuresis. The lack of continuity in enuresis follow-up was highlighted when we investigated who was conducting research and publishing on enuresis and nocturia. Pediatric disciplines (50%) are mostly involved in children's studies, and urologists in the adult ones (37%). DISCUSSION: We propose a stepwise approach for the transition of children with enuresis from pediatric to adult care, depending on the clinical subtype: from refractory patients who demand more complex, multidisciplinary care and would benefit from a transition coordinator up to children/young adults cured of enuresis but who persist in having or present lower urinary tract symptoms (LUTS)/nocturia later on. In any case, the transition process should be initiated early at the age of 12-14 years, with adequate information to the patient and parents regarding relapses or LUTS/nocturia occurrence and of the future treating general practitioner on the enuresis characteristics and comorbidities of the patient.

Being an adolescent with epilepsy during the transition from pediatric to adult hospital care: A qualitative descriptive study.

BACKGROUND: The transition from pediatric to adult care is challenging for adolescent patients despite numerous recommendations in recent decades. However, the perspective of the patients is sparsely investigated. AIM: To explore the experiences and needs of adolescents with epilepsy (AWE) during the transition from pediatric to adult hospital care. METHODS: We conducted 15 semi-structured interviews with AWEs aged 13-20 years and 10 h of field observations of consultations. Interviews were audio-recorded, transcribed, anonymized, and entered into NVivo (version 12, QSR International) with the transcribed field notes. Data were analyzed using systematic text condensation. RESULTS: Three themes were identified: (1) Navigating epilepsy in everyday life; (2) The difficult balance between concealment and openness about epilepsy; and (3) Being seen as an individual and not an illness. AWEs' needs in transition are closely associated with their experiences and perceptions of illness, treatment, consultations, and seizures. Notably, AWEs reveal a significant concern about being overlooked beyond their medical condition in appointments. CONCLUSIONS: This study highlights the vulnerability and challenges of AWEs transitioning to adult care. Overall, AWEs seek understanding, acceptance, and autonomy in managing their epilepsy and transitioning to adult care. Their experiences underscore the importance of holistic support and communication in healthcare settings. A concerted effort from healthcare professionals (HCP) is necessary to foster the recognition of AWEs as individuals with distinct personalities, needs, and capabilities.

The Crucial Role of Empowerment in Engaging Adolescents and Young Adults for Independence: Essential Strategies and Skills for a Successful Transition.

BACKGROUND: An increasing number of pediatric solid organ transplant (SOT) recipients are surviving into adolescence and young adulthood. The transition from pediatric to adult-oriented care occurs during a unique and vulnerable period. METHODS: Presented here is a structured approach to healthcare transition (HCT) for adolescent and young adult SOT recipients aimed at optimizing independence in order to assist young patients with adherence, self-management, and improved quality of life. RESULTS: Close attention must be paid to neurocognitive development, mental well-being, and social determinants of health. CONCLUSIONS: These efforts require a multidisciplinary team approach as well as collaboration between pediatric and adult providers in order to achieve these goals and patient longevity.

Changes over time in self-efficacy and the allocation of responsibility for health management tasks in pediatric liver transplant recipients: Targets to improve the transition process.

BACKGROUND: The process of transition to adult-based care encompasses a critical period in the life of an adolescent and young adult living with a chronic illness and one that comes with an increase in the risk of poor health outcomes. As yet, there is a dearth of empirical data to help optimize this process to ensure the best long-term outcome. METHODS: This study used a principal components analysis to determine specific constructs measured by a revised version of the transition readiness survey used in our clinic. We investigated changes in these constructs over time. We further investigated the relationship between the change in these constructs over time spent in a focused transition program with adherence. RESULTS: The primary component underlying our transition readiness survey for patients and parents represented self-efficacy. Time spent in the transition program was an independent predictor of change in self-efficacy (rho 0.299, p = .015); however, the magnitude of that change had no relationship to adherence. Change in parent-proxy self-efficacy was found to have a statistically significant relationship with tacrolimus standard deviation (rho -0.301, p = .026). There was disagreement identified between patient and parent responses on the survey. Neither change in patient nor parent reports of self-efficacy was found to have a relationship with post-transfer adherence. CONCLUSIONS: This study reaches the novel conclusion that self-efficacy and parent-proxy self-efficacy are dynamic concepts that change over time spent in a focused transition program. The patient-parent disagreement and the relationship between parent-proxy self-efficacy and adherence stress the importance of involving parents/guardians in the transition process as well.

Educational Needs of the Adolescent Transplant Recipient: A Developmental Approach to Understanding Transplant.

BACKGROUND: As pediatric transplant patients reach adolescence, care teams must prepare them for an eventual transition to adult-oriented care. Care teams must provide patients with the necessary knowledge and skills to manage their medical needs independently, but the level of learning required to successfully self-manage a transplant is substantial. Furthermore, adolescence is also a dynamic developmental period that includes significant cognitive development and changes in social motivations. METHODS: Within this report, we offer insights into some of the key developmental mechanisms of adolescence that may influence their learning in a medical context. We also review key concepts that should be included in patient education across a range of domains. Finally, we consider how patients with comorbid developmental disorders may require tailored education. RESULTS: Key domains for education include (1) personal health history, (2) medication knowledge/adherence, (3) navigation of the healthcare system, and (4) communication with others about their health. Teams should intentionally track patient progress in their education, although few formalized tools are currently available to support tracking. Accommodations to learning for patients with developmental needs include varied instructional modalities (e.g., verbal, written, and modeling), opportunities to practice skills in a controlled manner, and establishment of family/community support that can persist into adulthood. CONCLUSIONS: Education of transplant patients is a critical but long-term process that supports the successful transition to adulthood. Care teams should develop intentional plans to transfer knowledge and build skills across adolescence, while remaining open to adaptive approaches to support the learning of all patients.