Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.

Educator Perspectives on Grief-Sensitive Training During the COVID-19 Pandemic in US Public Schools.

BACKGROUND: Grief and loss are common experiences for children and adolescents, particularly during the COVID-19 pandemic. Educators feel unprepared to support grieving students due to lack of training. We studied educator experiences receiving grief-sensitive training as part of the grief-sensitive schools initiative (GSSI), which provides grief-sensitive training, online video-based and print resources, and a financial grant to schools and school districts for use in supporting grieving students. METHODS: Fourteen New York and Florida educators who received GSSI training participated in small focus groups or semi-structured interviews on their experiences receiving GSSI training and supporting grieving students during the pandemic. Transcripts were analyzed using grounded-theory analysis. RESULTS: Emergent themes included increased confidence engaging grieving students, the desire for recurring trainings, the value of receiving training from an expert on pediatric grief and loss and the opportunity to ask questions, the need for grief-sensitive training to reflect the cultural diversity of school communities, the unique losses experienced by students during the pandemic, and compassion fatigue and burnout in educators. IMPLICATIONS FOR SCHOOL HEALTH POLICY, PRACTICE, AND EQUITY: Policymakers should recognize the effects of grief on students' learning and development and collaborate with educators to develop resources. CONCLUSIONS: Educators found GSSI training useful in supporting grieving students, particularly during the pandemic.

Enhancing access to early intervention by including parent navigators with lived experience in a pediatric medical home.

INTRODUCTION: A growing number of children have developmental delay (DD) or intellectual and developmental disabilities (IDD), and early intervention (EI) can improve their developmental trajectory. However, access to EI is fraught with disparities. This article describes the development of Parent Navigator (PN) program that placed three parents with lived experience in a pediatric medical home to serve as community health workers to provide support to families with a child with DD or IDD to access EI and other needed resources. METHOD: We used a mixed-methods approach to program evaluation that included (a) documenting the number of referrals to the EI programs made by the PNs; (b) documenting referral outcomes; (c) conducting a physician satisfaction survey; and (d) interviewing the PNs to reflect on their experiences assisting families. RESULTS: From July 2018 to September 2020, our PNs facilitated 623 referrals to EI due to significant developmental concerns found during a pediatric visit. Rates of successful connection to EI were 71%. Survey results indicated that pediatricians felt the PNs were a valuable part of the healthcare team and helped reduce their own job stress. The PNs provided multiple examples of their methods of addressing barriers to EI access by relating to families with their own lived experience and by "meeting families where they are at." DISCUSSION: The PN program might be a successful approach to addressing disparities in EI access for families in need by using an innovative method of employing individuals with lived experience in the pediatric primary care setting. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Health Care Transition: The Struggle to Define Itself.

Health care transition is an expanding field of health care practice and research focused on facilitating adolescents and emerging adults with long-term conditions to transfer uninterruptedly from pediatric to adult health care services and to transition successfully into adulthood and beyond. There is a widespread need to develop and implement service models as approximately one million adolescents and emerging adults with long-term conditions transfer their care into the adult system and enter adulthood. The purpose of this article is to explore major issues associated with the current state of health care transition practice, research and ultimately policymaking and systems change. The prominent issues addressed in this article include the following. Defining clearly what constitutes models of health care transition practice as ambiguity exists with terminology used with concepts integral to health care transition. The indistinct meanings of health care transition terminology commonly used, such as transition, transfer, readiness, and preparation, need to be operationalized for widespread application. Furthermore, questions remain as to what goal-directed outcomes are expected within this field of practice and science.

Risk factors for unanticipated hospitalizations in children and youth with spina bifida at an urban children's hospital: A cross-sectional study.

BACKGROUND: Spina bifida (SB) is a condition resulting from the improper closure of the neural tube and vertebral column during fetal development. While patients' life expectancy and quality of life have improved dramatically due to medical advances, children continue to experience health-related issues that often require hospitalizations. OBJECTIVE: The association among sociodemographic and clinical characteristics with potentially preventable hospitalizations (PPH) in children and youth with myelomeningocele type SB was investigated in this cross-sectional study. METHODS: Chart reviews and data extraction were conducted on 108 children and youth, ages 1 month to 21 years, admitted for PPH in a regional children's academic medical center between May 2017 and July 2019. Sociodemographic variables included sex, age, type of insurance and ethnicity. Clinical variables included level of lesion, ambulation status, shunt dependency and selected diagnostic categories. Univariate, bivariate, and multivariate analyses were conducted to identify factors associated with PPH. RESULTS: Factors associated with PPH included being male, ages 5-18 years, low lumbar level lesions, non-ambulatory, with public insurance, Hispanic and shunt dependent. Most hospitalizations (73%) were for neurologic or urologic conditions. Factors independently associated with PPH were ethnicity for urologic conditions, being ambulatory for metabolic conditions, and age for gastroenterology conditions. CONCLUSION: Selected demographic and clinical variables were found to be associated with PPH of children and youth with myelomeningocele-type SB. The most common reasons for PPH were shunt malfunctions and urinary tract infections, consistent with other studies.

Exploratory study of the provision of academic and health-related accommodations to transition-age adolescents and emerging adults with spina bifida.

PURPOSE: The purpose of this exploratory study was to investigate the types of academic and health-related accommodations provided to adolescents and emerging adults with spina bifida aged 9-20 years. METHODS: Data were extracted from the paper and electronic records of transition-age youth enrolled in the study. Four open ended items involved content analysis. RESULTS: The most frequently identified accommodation was enrollment in special education classes in 47.7% of the charts. Other academic accommodations that were most often reported were adaptive physical education (n = 71, 39.9%), tutoring (n = 28; 15.7%), and home schooling (n = 21; 11.8%). Clean intermittent catheterization was the most frequently identified health-related accommodation provided by the school nurse/aide (n = 57; 32%).The largest percentage of requests for additional accommodations were made during the middle school grades (15; 54.8%) followed by high school (10; 32.2%). CONCLUSION: Findings demonstrated that persistent issues were identified by parents/adolescents regarding the provision of school-related accommodations. This is a relevant area for clinical practice to ensure students with special health care needs and those with spina bifida receive the academic and health-related accommodations in their Individualized Education Program/504 plans.

Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners.

INTRODUCTION: The purpose was to identify the educational needs of pediatric nurses and pediatric nurse practitioners providing direct care to transition-aged youth with chronic illness and disability and to identify strategies to develop health care transition planning (HCTP) expertise. METHOD: Mixed-methods descriptive analyses were performed on survey data extracted from a larger national study exploring the provision of HCTP activities performed by nurses of two pediatric nursing professional organizations. RESULTS: Items querying educational needs were completed by 1,162 pediatric nurses serving in advanced practice and staff roles. Twenty percent reported having specialized HCTP education. Of which more than half received it outside of the workplace. Factor analysis revealed two constructs explaining 73.4% of the variance in nurses' reported level of knowledge. DISCUSSION: HCTP education and the development of nurse-led services to facilitate optimal health care transitions outcomes are necessitated. Academia and service have a shared responsibility in educating nurses.

Factors Affecting Compliance with Diabetic Retinopathy Screening: A Qualitative Study Comparing English and Spanish Speakers.

Purpose: The purpose of this study was to understand individual-, social-, and system-level factors that affect compliance with recommended diabetic retinopathy (DR)-evaluations, and how these factors vary between English and Spanish speakers. Patients and Methods: We conducted a qualitative study using semi-structured interviews. Study subjects included Kaiser Permanente Southern California members with type II diabetes mellitus at least aged 26 years who spoke English or Spanish. Patients were divided into groups based on their adherence with DR evaluations. Our main outcome measure was the major themes expressed by patients that explained their compliance with DR evaluation. Results: Fifty-one participants were enrolled: 30 English speakers (11 nonadherent, 19 adherent) and 21 Spanish speakers (8 nonadherent, 13 adherent). Adherent patients were more likely to have had experience with diabetes and identify as being responsible for their own care. Substantially more non-adherent patients suggested that beliefs and attitudes were the reasons people missed retinopathy appointments. More English-speaking participants tended to be self-directed in managing their healthcare, whereas more Spanish speakers relied on others for help. English speakers also noted better relationships with their physicians. Spanish speakers outlined problems with insurance coverage and costs as barriers. Conclusion: These data suggest two specific intervention strategies that eye care providers could implement to improve adherence with diabetic retinopathy screening and follow up: incorporating a person with DR-related visual loss into the team of staff delivering diabetes support programs and communication campaigns including specific messaging to address fears related to vision loss.

A report from the NIHR UK working group on remote trial delivery for the COVID-19 pandemic and beyond.

BACKGROUND: Prior to the COVID-19 pandemic, the majority of clinical trial activity took place face to face within clinical or research units. The COVID-19 pandemic resulted in a significant shift towards trial delivery without in-person face-to-face contact or "Remote Trial Delivery". The National Institute of Health Research (NIHR) assembled a Remote Trial Delivery Working Group to consider challenges and enablers to this major change in clinical trial delivery and to provide a toolkit for researchers to support the transition to remote delivery. METHODS: The NIHR Remote Trial Delivery Working Group evaluated five key domains of the trial delivery pathway: participant factors, recruitment, intervention delivery, outcome measurement and quality assurance. Independent surveys were disseminated to research professionals, and patients and carers, to ascertain benefits, challenges, pitfalls, enablers and examples of good practice in Remote Trial Delivery. A toolkit was constructed to support researchers, funders and governance structures in moving towards Remote Trial Delivery. The toolkit comprises a website encompassing the key principles of Remote Trial Delivery, and a repository of best practice examples and questions to guide research teams. RESULTS: The patient and carer survey received 47 respondents, 34 of whom were patients and 13 of whom were carers. The professional survey had 115 examples of remote trial delivery practice entered from across England. Key potential benefits included broader reach and inclusivity, the ability for standardisation and centralisation, and increased efficiency and patient/carer convenience. Challenges included the potential exclusion of participants lacking connectivity or digital skills, the lack of digitally skilled workforce and appropriate infrastructure, and validation requirements. Five key principles of Remote Trial Delivery were proposed: national research standards, inclusivity, validity, cost-effectiveness and evaluation of new methodologies. CONCLUSIONS: The rapid changes towards Remote Trial Delivery catalysed by the COVID-19 pandemic could lead to sustained change in clinical trial delivery. The NIHR Remote Trial Delivery Working Group provide a toolkit for researchers recommending five key principles of Remote Trial Delivery and providing examples of enablers.

Oro-mucosal midazolam maleate: Use and effectiveness in adults with epilepsy in the UK.

BACKGROUND: Oro-mucosal midazolam maleate (OMM) with suitable training to family and carers is being increasingly recognized as the treatment of choice to mitigate the development of status epilepticus in non-hospital community settings. There are no studies to describe the use, effectiveness, and suitable dosing of OMM in adults with epilepsy in community settings. PURPOSE: To describe the use, effectiveness, and dosing of OMM in the emergency treatment of epileptic seizures in community settings. METHODS: A retrospective observational study (2016-17) design was used with participant recruitment from four UK NHS secondary care outpatient clinics providing epilepsy management. Study sample was of adult people with epilepsy (PWE) having had a recent seizure requiring OMM. Data on patient demographics, patient care plans, details of a recent seizure requiring emergency medication, and dose of OMM were collected from medical records. RESULTS: Study data from 146 PWE were included. The mean age of PWE was 41.0 years (SD 15.2) and mean weight was 64.8Kg (SD 18.2). Fifty-three percent of PWE were recorded as having intellectual disability. The most frequently used concomitant medications were lamotrigine (43%). The majority of seizures occurred at people's homes (n = 92, 63%). OMM was most often administered by family/professional care-givers (n = 75, 48.4%). Generalized (tonic/clonic) seizures were recorded in most people (n = 106, 72.6%). The most common initial dose of OMM was 10 mg (n = 124, 84.9%). The mean time to seizure cessation after administration of this initial dose was 5.5 minutes (SD = 4.5, Median 5.0, IQR 2.1-5.0). Only a minority of seizures led to ambulance callouts (n = 18, 12.3%) or hospital admissions (n = 13, 9%). CONCLUSION: This is the first observational study describing the use and effectiveness of OMM in adults in community settings. Minimal hospital admissions were reported in this cohort and the treatment was effective in ending seizures in adults in community settings.

Self-management for youth and young adults with special health needs: protocol for a scoping review of health care transition planning literature.

OBJECTIVE: The purpose of this scoping review is to explore the extent to which self-management of youth and young adults with special health care needs is reported in the health care transition literature. INTRODUCTION: It is essential for youth and young adults with special health care needs to learn the self-management skills, to the extent possible, that are essential in maintaining the stability of their chronic condition to seamlessly transfer to adult care and live independently. Acquisition of self-management competencies for chronic care management is an essential component of health care transition preparation. INCLUSION CRITERIA: The inclusion criteria will be based upon age and condition designation. The age range of participants will include youth and young adults, aged nine to 35 years, who have special health care needs. Inclusion criteria consists of both non-categorical and diagnostic specific terminology for youth and young adults with a childhood acquired chronic condition. Non-categorical terms used include "long-term chronic condition," "special health care needs," "medical complex condition," "complex care needs," "developmental disability," "intellectual disability," "mental health condition," "emotional disabilities," "physical disabilities," "chronic illness," and "chronic condition." METHODS: The following databases will be accessed for this health care transition scoping review: CINAHL, Cochrane CENTRAL, Embase, Ovid MEDLINE, PsycINFO, and Web of Science. Relevant gray literature will be accessed as well. The Covidence software platform will be used to review citations and full-text articles. Two reviewers will independently review abstracts and full texts of studies, and extract data using the data extraction tool. Any conflicts will be resolved with a third reviewer. Review findings will be presented in tabular format and narrative synthesis based upon the scoping review objective.

Eslicarbazepine acetate response in intellectual disability population versus general population.

BACKGROUND: A quarter of people with intellectual disability (ID) have epilepsy, compared to approximately one in a hundred across the general population. Evidence for the safe and effective prescribing of antiepileptic drugs (AEDs) for those with ID is, however, limited. AIMS OF STUDY: This study seeks to strengthen the research evidence around Eslicarbazepine Acetate (ESL), a new AED, by comparing response of individuals with ID to those from the general population who do not have ID. METHODS: A single data set was created through retrospective data collection from English and Welsh NHS Trusts. The UK-based Epilepsy Database Research Register (Ep-ID) data collection and analysis method were used. RESULTS: Data were collected for 93 people (36 ID and 57 'no ID'). Seizure improvement of '>50%' was higher at 12 months for 'no ID' participants (56%), compared to ID participants (35%). Retention rates were slightly higher for those with ID (56% compared to 53%). Neither difference was significant. CONCLUSIONS: Tolerance and Efficacy for ID and 'no ID' people in our data set were similar. Seizure improvement and retention rates were slightly lower than that found in other European data sets, but findings strengthen the evidence for the use of ESL in the ID population.

Racial/ethnic minority children recently placed in the child welfare system: the impact of sociodemographic, medical and mental health factors on overweight /obesity.

Children in the child welfare system have greater rates of obesity and are more prone to overweight/obesity as adults compared to other children. There is limited research on how ecological, biological and developmental factors impact the trajectory of overweight/obesity in this group. This retrospective study examined these factors among children entering the child welfare system. Overweight/obesity was highest among children 12-18 years. Children with diagnoses indicative of poor nutrition, and limiting exercise, were more likely to be overweight/obese. Ecological risks often were not disclosed. Barriers to obtaining information to address overweight/obesity reflect challenges to addressing chronic disease more broadly.

Psychosocial outcomes for adults with spina bifida: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to explore the evidence on psychosocial needs and related outcomes for adults with spina bifida. INTRODUCTION: Individuals with spinal bifida have complex service needs that can lead to the emergence of secondary conditions and health complications, which can result in serious, life-threatening illnesses. While much is known about the biological impact of spina bifida, there is a dearth of information regarding its psychological and social impact. INCLUSION CRITERIA: This scoping review will include adults (18 years and over) with the following diagnoses: spina bifida, neural tube defects, tethered cord, myelodysplasia/myelodysplasias, diastematomyelia/diastematomyelias, meningomyelocele, terminal myelocystocele, fatty thickened filum, split cord malformation, or lipomyelomeningocele. The literature reviewed will explore the range and trend of topics reported from the time data on adults with spinal bifida were first published published to the most current time frame. This review will report on the psychosocial needs identified for adults with spinal bifida, such as access to community-based services and support needed to function independently. There will be no limits to the geographical location or setting (e.g. health care or community-based). METHODS: The following databases will be accessed for this review: Ovid MEDLINE, Embase, Cochrane Library, CINAHL, Web of Science, PsycINFO, and ERIC, with no date restrictions. Gray literature searches will be included. Potentially relevant studies will be assessed independently by two reviewers for inclusion and conflicts discussed with a third reviewer. The review narrative will be accompanied by findings presented in tabular format.

European perspective of perampanel response in people with Intellectual Disability.

BACKGROUND: Epilepsy prevalence is over 20% for those with ID. It is difficult to diagnose and treat and more likely to be treatment resistant. The evidence informing prescribing is sparse, particularly for new drugs such as perampanel (PMP). AIMS OF THE STUDY: This study seeks to strengthen the research evidence regarding PMP for people with ID by pooling information from two isolated and separately conducted studies: the UK-based Epilepsy Database Register (Ep-ID) and the data from the Kempenhaeghe clinic in the Netherlands. METHODS: A single data set of comparable data was created and analysed under agreement and supervision of a UK statistician. RESULTS: Seizure reduction within twelve months was evident in 62% of Dutch and 47% of UK patients. Retention rates were higher for those in the UK (P = .01) and for patients with moderate to profound ID, whilst side effects were more prominent in the Dutch cohort. CONCLUSIONS: Comparable rates of seizure reduction are in line with estimates for non-ID patients, adding to the evidence suggesting that PMP has a similar impact on those with ID. Taking a European perspective and sharing data across centres can help strengthen the evidence for prescribing antiepileptic drugs in the ID population.

Lacosamide in the general population and in people with intellectual disability: Similar responses?

PURPOSE: Epilepsy prevalence is significantly higher in people with Intellectual Disability (ID) compared to people with epilepsy (PWE) from the general population. Increased psychological and behavioural problems, healthcare costs, morbidity, mortality and treatment resistance to antiepileptic drugs (AEDs) is associated with epilepsy in ID populations. Prescribing AEDs for PWE and ID is challenging and influenced heavily by studies conducted with the general population. Our study compares Lacosamide (LCM) response for the ID population to those from the general population; using data from an UK based epilepsy database register (EP ID/PDD AED Register). METHODS: Pooled retrospective case notes data for PWE prescribed LCM at 11 UK NHS Trusts were analysed. Participants were classified as per WHO guidance into groups of moderate-profound ID, mild ID and General population. Demographics, concomitant AEDs, starting and maximum dosage, exposure length, adverse effects, dropout rates, seizure frequency were collected. Group differences were reported as odds ratios estimated from univariable logistic regression models. RESULTS: Of 232 consented participants, 156 were from the general population and 76 had ID (24 mild, 52 moderate-profound). Twelve month withdrawal rates and reasons, efficacy, side-effects, start and maximum doses were similar between the groups. Dose titration between baseline and three months was significantly slower in the ID group (p = 0.02). CONCLUSION: There were no differences for LCM outcomes between general and ID groups. Slower LCM titration in ID populations in the first 3 months was associated with higher retention and lower behavioural side effects as compared to similar European studies.

Exploring epilepsy attendance at the emergency department and interventions which may reduce unnecessary attendances: A scoping review.

BACKGROUND: Repeat attendances to emergency departments for seizures, impacts on the individual and burdens health care systems. We conducted a review to identify implementable measures which improve the management of people with epilepsy reducing healthcare costs and their supportive evidence. METHODS: A scoping review design using suitable search strategy as outlined by PRISMA-ScR was used to examine seven databases: MEDLINE, EMBASE, CINAHL, AMED, PsychINFO, HMIC and BNI. A manual search of the COCHRANE database and citation searching was also conducted. A thematic analysis was conducted to explore the context and reasons of emergency department attendance for seizures, particularly repeat attendances and the strategies and measures deployed to reduce repeat attendances. RESULTS: Twenty-nine reports were included, comprising of a systematic review, a randomised control study, a multi-method study, quantitative studies (n = 17), qualitative studies (n = 6), an audit, a survey and a quality improvement project. Thematic analysis identified four broad areas for reducing repeat attendances. These were developing care pathways, conducting care and treatment reviews, providing educational interventions and role of ambulance staff. CONCLUSION: The findings indicate varied reasons for attendance at ED following seizure, including mental health and knowledge of seizure management and lack of education. Implementations of care pathways in ED have been found to reduce admission related costs.

An exploratory study of adolescents and emerging adults with spina bifida knowledge of their individual education program: Implications for health care transition planning.

PURPOSE: The purpose of this study was to explore adolescents and emerging adults (AEA) with spina bifida (SB) understanding of their Individualized Education Program (IEP) and to identify factors related to their knowledge about their own IEP. METHODS: Data were collected from January 2015 to July 2016 from 79 adolescents with SB. A ten-item questionnaire including demographics and questions specifically addressing IEPs was used. Qualitative analysis followed an iterative, emergent approach. Two experienced coders independently read and coded each of the three open-ended questions. It was determined that the responses of all three questions could feasibly be merged as the analysis of responses were similar. FINDINGS: This was a predominately 70 (88.7%) Hispanic sample of AEA with SB who ranged in age from 12 to 20 years (M= 15.3 years) consisting of 41 males and 38 females. All reported they have/had an IEP. Four major themes and eleven subthemes emerged from the analysis. Major themes were: The Barometer of How I Am Doing, Creating the Right Match for Learning, Obtaining the Assistance I Need, and Future Goals and Planning. CONCLUSIONS: Findings of this study reveal the IEP knowledge gaps and lack of lifestyle self-management skills AEA with SB reported pertaining to IEPs.

Smart devices for the management of pediatric asthma: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to identify the scope of literature published on the use of smart devices for interventions in pediatric asthma, including low income and culturally diverse populations. INTRODUCTION: Childhood asthma results in substantial morbidity and costs that pose a significant burden to families and healthcare systems. Low-income and culturally diverse pediatric populations have increased rates of morbidity and mortality compared to higher income families. Smart devices have the potential to improve pediatric asthma health outcomes and reduce health disparities. INCLUSION CRITERIA: This scoping review will consider studies with participants who are children, adolescents and young adults with the diagnosis of asthma (ages zero to 26 years). Studies of children and adolescents and young adults with asthma may include adult participants who manage and/or supervise asthma care or provide asthma instruction. METHODS: This scoping review will be conducted using the Ovid MEDLINE, Embase, Cochrane Library, CINAHL, Web of Science, PsycINFO, ERIC, and both Compendex and Inspec through Engineering Village databases. Gray literature searches will also be conducted. Studies will be reviewed independently by two reviewers, with any conflicts adjudicated by a third member. Data extracted will be presented in a tabular format with an accompanying narrative.