Spina bifida (SB) is a complex congenital condition characterized by incomplete closure of the neural tube, resulting in varying degrees of physical and neurological impairment. Although commonly managed by multidisciplinary pediatric clinics, a substantial proportion of SB patients are now living into adulthood, necessitating the transition from pediatric to adult healthcare. This transition introduces a myriad of challenges for individuals living with SB and their families. Prior research on SB transition programs has demonstrated anecdotal success; however, minimal research has been published on early posttransition health outcomes and compliance with medical recommendations. This quality improvement study assessed early posttransition compliance with medical recommendations, adverse health events, access to medical supplies/equipment, and patient-reported health outcome and confidence in medical providers.
Adult participants in the Spina Bifida Transition Clinic at the authors\' pediatric institution were invited to complete a telephone survey after transition to adult care. The mean (SEM) elapsed time since transition was 1.21 (0.11) years. The survey evaluated adult provider utilization, accessibility of medical supplies and equipment, adverse medical events, compliance with sleep study acquisition, patient-reported health status, and satisfaction with providers.
Of 52 eligible participants, 49 (94%) completed a telephone survey. Within the cohort, 82% had open SB (myelomeningocele), with the remaining having occult SB (lipomyelomeningocele). The mean age at transition was 26.0 years. Since transition, 78% have attended at least one primary care visit, with 76% seeking care from at least one adult care specialist (69% sought care with urologists). Forty-five percent reported an adverse medical event: 31% required an emergency department visit, 22% were hospitalized, 18% underwent surgery, and 24% had skin breakdown. Access to medical supplies varied, with patients experiencing the most difficulty obtaining wheelchairs and assistive walking devices. Patients rated pediatric provider engagement and knowledge of SB significantly higher than adult providers (mean 3.92 vs 3.32, p < 0.001).
This quality improvement study evaluated the effectiveness of our Spina Bifida Transition Clinic in the early post transition period. While patients have used primary and specialty care (urology), they have experienced many adverse events and low compliance with sleep study acquisition. Continued evaluation of transition programs is required to optimize the outcome of those living with SB.

OBJECTIVE: To characterize the primary ethical issue and contextual features of ethics consultation for patients aged 18-26 years based on setting (adult vs. pediatric).
METHODS: A retrospective review of 965 ethics consultation notes to identify patients aged 18-26 years cared for in the pediatric or adult setting between January 1, 2016-December 31, 2020. We collected demographic information and used conceptual content analysis to identify the primary ethical issue and contextual features for each consult and analyzed these using descriptive statistics.
RESULTS: We identified 46 consults (30 adult and 16 pediatric) for 40 unique patients (28 adult and 12 pediatric). The median age was 19 years in the pediatric setting and 24 in the adult setting. Fifty-three percent were female, 95% non-Hispanic, 68% White, and 76% were inpatient. The primary ethical issue in the adult setting was Refusal of Recommended Treatment (20%), while the dominant contextual issue was Communication Disputes/Conflicts Between the Staff and Patient (23%). The primary ethical issue for the pediatric setting was Goals of Care (31%) and the dominant contextual feature was concerns for Quality of Life (31%).
CONCLUSIONS: The primary ethical issues and related contextual features this population experiences differ based on setting. Improved understanding of adolescent and young adult development, especially related to values formation, decision-making, and communication skills training may ameliorate some of these challenges. Referral patterns for this age group overall and particularly for patients on the ends of the spectrum and inpatients raise concerns for ethics consultation use. Further education about ethics services is recommended.

UNASSIGNED: Internationally there has been much interest in the impact of the COVID-19 pandemic on the care and support of older people including those with needs arising from self-neglect and/or hoarding. During the pandemic English local authorities\' legal duties remained to respond to concerns about harm about people with care and support needs living in the community. This paper reports interviews with 44 participants working for adult safeguarding/adult protective services (APS) in 31 local authorities recruited from all English regions. Interviews took place online in November-December 2020 as the pandemic\'s second UK wave was emerging. Analytic induction methods were used to develop themes.
UNASSIGNED: Participants reported some of the variations in referrals to their services with more contact being received from community sources concerned about their neighbours\' welfare. Participants provided accounts of the local organisation of adult safeguarding services during the pandemic, including in some areas the potential for offering early help to older people at risk of harm from self-neglect or hoarding behaviour. Online inter-agency meetings were positively received but were acknowledged to potentially exclude some older people.
UNASSIGNED: This article reports observations from adult safeguarding practitioners about their services which may be of interest internationally and in renewing services that can sustain public interest in the welfare of their older citizens and in developing early help. The findings reflect those from children\'s services where online meetings are also predicted to enhance professional communications post-pandemic but similarly need to ensure effective engagement with service users and their families.

BACKGROUND: College students with disabilities need to transition from pediatric-centered care to adult care. However, they may become overwhelmed by multiple responsibilities, such as academic activities, peer relationships, career preparation, job seeking, independent living, as well as managing their health and promoting healthy behaviors.
OBJECTIVE: As the use of smartphones and wearable devices for collecting personal health data becomes popular, this study aimed to compare the characteristics of self-tracking health practices between college students with disabilities and their counterparts. In addition, this study examined the relationships between disability status, self-tracking health practices, eHealth literacy, and subjective well-being among college students.
METHODS: The web-based questionnaire was designed using Qualtrics for the cross-sectional online survey. The survey data were collected from February 2023 to April 2023 and included responses from 702 participants.
RESULTS: More than 80% (563/702, 80.2%) of the respondents participated voluntarily in self-tracking health practices. College students with disabilities (n=83) showed significantly lower levels of eHealth literacy and subjective well-being compared with college students without disabilities (n=619). The group with disabilities reported significantly lower satisfaction (t411=-5.97, P<.001) and perceived efficacy (t411=-4.85, P<.001) when using smartphone health apps and wearable devices. Finally, the study identified a significant correlation between subjective well-being in college students and disability status (β=3.81, P<.001), self-tracking health practices (β=2.22, P=.03), and eHealth literacy (β=24.29, P<.001).
CONCLUSIONS: Given the significant relationships among disability status, self-tracking health practices, eHealth literacy, and subjective well-being in college students, it is recommended to examine their ability to leverage digital technology for self-care. Offering learning opportunities to enhance eHealth literacy and self-tracking health strategies within campus environments could be a strategic approach to improve the quality of life and well-being of college students.

BACKGROUND: Transition of care (TOC; from childhood into adulthood) of patients with anorectal malformations (ARM) and Hirschsprung disease (HD) ensures continuation of care for these patients. The aim of this international study was to assess the current status of TOC and adult care (AC) programs for patients with ARM and HD.
METHODS: A survey was developed by members of EUPSA, ERN eUROGEN, and ERNICA, including patient representatives (ePAGs), comprising of four domains: general information, general questions about transition to adulthood, and disease-specific questions regarding TOC and AC programs. Recruitment of centres was done by the ERNs and EUPSA, using mailing lists and social media accounts. Only descriptive statistics were reported.
RESULTS: In total, 82 centres from 21 different countries entered the survey. Approximately half of them were ERN network members. Seventy-two centres (87.8%) had a self-reported area of expertise for both ARM and HD. Specific TOC programs were installed in 44% of the centres and AC programs in 31% of these centres. When comparing centres, wide variation was observed in the content of the programs.
CONCLUSIONS: Despite the awareness of the importance of TOC and AC programs, these programs were installed in less than 50% of the participating centres. Various transition and AC programs were applied, with considerable heterogeneity in implementation, content and responsible caregivers involved. Sharing best practice examples and taking into account local and National Health Care Programs might lead to a better continuation of care in the future.
METHODS: III.

OBJECTIVE: To explore young adults\' experiences of living with type 1 diabetes in the transition to adulthood, including experiences of the transfer from paediatric to adult care.
METHODS: A qualitative approach was used.
METHODS: Ten young adults, six women and four men, aged 19-29 years, participated. Participants were recruited at their regular diabetes clinic from spring 2021 to spring 2022. Semi-structured interviews were transcribed and analysed using qualitative content analysis.
RESULTS: Dreaming of being nurtured towards self-reliance was the overarching theme. Personal experiences of the transition to adulthood, including the transfer from paediatric to adult care, were described in terms of struggling to find balance in daily life, dealing with feelings of being different, being gradually supported to achieve independence, and wishing to be approached as a unique person in healthcare.
CONCLUSIONS: In healthcare, it is important to emphasize not only diabetes-related factors but also emotional and psychosocial aspects of life connected to the transition to adulthood, including the transfer to adult care. The young adults wished to be seen as unique persons in healthcare during their emerging adulthood and should therefore be supported to achieve self-reliance through personal preparations for new challenges and for the consequences of transitioning to adulthood. Specialist nurses can provide appropriate knowledge and leadership.
UNASSIGNED: These findings can guide nurse specialists in support for emerging adults to achieve self-reliance and indicate the importance of person-centred care when experiencing transition and transfer.
UNASSIGNED: The study adhered to EQUATOR guidelines, and the COREQ checklist for qualitative studies was used as the reporting method.

UNASSIGNED: Bronchiectasis is increasingly being recognized to exist in all settings with a high burden of disease seen in First Nations populations. With increasing numbers of pediatric patients with chronic illnesses surviving into adulthood, there is more awareness on examining the transition from pediatric to adult medical care services. We undertook a retrospective medical chart audit to describe what processes, timeframes, and supports were in place for the transition of young people (≥14 years) with bronchiectasis from pediatric to adult services in the Northern Territory (NT), Australia.
UNASSIGNED: Participants were identified from a larger prospective study of children investigated for bronchiectasis at the Royal Darwin Hospital, NT, from 2007 to 2022. Young people were included if they were aged ≥14 years on October 1, 2022, with a radiological diagnosis of bronchiectasis on high-resolution computed tomography scan. Electronic and paper-based hospital medical records and electronic records from NT government health clinics and, where possible, general practitioner and other medical service attendance were reviewed. We recorded any written evidence of transition planning and hospital engagement from age ≥14 to 20 years.
UNASSIGNED: One hundred and two participants were included, 53% were males, and most were First Nations people (95%) and lived in a remote location (90.2%). Nine (8.8%) participants had some form of documented evidence of transition planning or discharge from pediatric services. Twenty-six participants had turned 18 years, yet there was no evidence in the medical records of any young person attending an adult respiratory clinic at the Royal Darwin Hospital or being seen by the adult outreach respiratory clinic.
UNASSIGNED: This study demonstrates an important gap in the documentation of delivery of care, and the need to develop an evidence-based transition framework for the transition of young people with bronchiectasis from pediatric to adult medical care services in the NT.

BACKGROUND: Disorders/differences of sex development (DSD) comprise a heterogeneous group of inborn conditions where the individual\'s sex chromosomes, gonads, and/or anatomical sex are discordant. Since the Chicago Consensus Conference in 2005, multidisciplinary care has been implemented in specialised paediatric tertiary care centres and clinical practice has substantially changed towards a more holistic approach.
CONCLUSIONS: Psychological support has become a key factor in the management of DSD. After paediatric care, one of the main challenges is the transition of patients to expert care in adulthood. Patients frequently experience difficulties in accessing specialised medical care in adulthood, resulting in loss to follow-up affecting the patients\' physical and psychological health as well as quality of life. Clinical features and long-term outcomes are highly variable in most DSD conditions. Although medical care has improved, morbidity and mortality are increased in all conditions. A particular challenge in the care of DSD patients in adulthood is optimisation of fertility potential. Ideally, this is addressed already in adolescence and requires close interaction of not only paediatricians and adult endocrinologists but also urologists, andrologists or gynaecologists, and psychologists.
CONCLUSIONS: This review addresses issues relating to transition of DSD care from the paediatric to adult care as well as health-related challenges in adulthood in DSD.

Youth with complex health care needs, defined as those requiring specialized health care and services for physical, developmental, and/or mental health conditions, are often cared for by paediatricians and paediatric specialists. In Canada, the age at which provincial/territorial funders mandate the transfer of paediatric care to adult services varies, ranging between 16 and 19 years. The current configuration of distinct paediatric and adult care service boundaries is fragmentary, raising barriers to continuity of care during an already vulnerable developmental period. For youth, the lack of care integration across sectors can negatively impact health engagement and jeopardize health outcomes into adulthood. To address these barriers and improve transition outcomes, paediatric and adult care providers, as well as family physicians and other community partners, must collaborate in meaningful ways to develop system-based strategies that streamline and safeguard care for youth transitioning to adult services across tertiary, community, and primary care settings. Flexible age cut-offs for transfer to adult care are recommended, along with considering each youth\'s developmental stage and capacity as well as patient and family needs and circumstances. Specialized training and education in transitional care issues are needed to build capacity and ensure that health care providers across diverse disciplines and settings are better equipped to accept and care for young people with complex health care needs.

BACKGROUND: Transitioning from paediatric medical care to adult care is a challenging process for children, parents and healthcare professionals. The aim of this study was to explore the experiences, concerns and needs of parents of children with Down syndrome and of professionals regarding this transition.
METHODS: A qualitative study was performed using semi-structured interviews with 20 parents of children with Down syndrome and six healthcare professionals.
RESULTS: We showed that parents and professionals have concerns during each of the three distinct phases of transition (preparation, transfer and integration). Data disclose specific concerns regarding communication, continuity of care and rebuilding trust. We propose a framework for the transition to adult care.
CONCLUSIONS: The transition in medical care for children with Down syndrome should be flexible, patient-centred and coordinated together with patients and parents. Only in ensuring continuity of care will individuals with Down syndrome not get lost in transition.