Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home,” are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults. It also includes new and updated sections on definition and guiding principles, the status of health care transition preparation among youth, barriers, outcome evidence, recommended health care transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. The clinical report also includes new recommendations pertaining to infrastructure, education and training, payment, and research.

https://pediatrics.aappublications.org/content/pediatrics/early/2018/10/18/peds.2018-2587.full.pdf

Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home

Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co‐morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co‐morbidities and other adverse health issues at higher rates than those who entirely switch to an adult‐care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decision‐making capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS.

Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review

Health care transition, or HCT, is the process of adolescents and young adults moving from a child/family-centered model of health care to an adult/patient-centered model of health care. Healthcare providers have an essential role in this process which can be especially challenging for individuals with medical or special healthcare needs. Neurofibromatosis type 1 (NF1) is a complex multisystem disorder requiring lifelong medical surveillance, education, and psychosocial support. This review highlights the transition needs of NF1 patients and provides resources for both clinicians and families to facilitate HCT in this population. The authors propose a framework for the development of an effective NF1 transition program by using the Six Core Elements model of the Got Transition program, reviewing existing literature, and incorporating author experiences in the care and transition of NF1 patients. 

/pdf/neurofibromatosis-type-1-nf1-addressing-the-transition-from-3tszgakv.pdf

Neurofibromatosis Type 1 (NF1): Addressing the Transition from Pediatric to Adult Care

Down syndrome arises from chromosomal non-disjunction during gametogenesis, resulting in an additional chromosome. This anomaly presents with intellectual impairment, growth limitations, and distinct facial features. Positive correlation exists between maternal age, particularly in advanced cases, and the global annual incidence is over 200,000 cases. Early interventions, including first and second-trimester screenings, have improved DS diagnosis and care. The manifestations of Down syndrome result from complex interactions between genetic factors linked to various health concerns. To explore recent advancements in Down syndrome research, we focus on the integration of artificial intelligence (AI) and machine learning (ML) technologies for improved diagnosis and management. Recent developments leverage AI and ML algorithms to detect subtle Down syndrome indicators across various data sources, including biological markers, facial traits, and medical images. These technologies offer potential enhancements in accuracy, particularly in cases complicated by cognitive impairments. Integration of AI and ML in Down syndrome diagnosis signifies a significant advancement in medical science. These tools hold promise for early detection, personalized treatment, and a deeper comprehension of the complex interplay between genetics and environmental factors. This review provides a comprehensive overview of neurodevelopmental and cognitive profiles, comorbidities, diagnosis, and management within the Down syndrome context. The utilization of AI and ML represents a transformative step toward enhancing early identification and tailored interventions for individuals with Down syndrome, ultimately improving their quality of life.

Unraveling Down Syndrome: From Genetic Anomaly to Artificial Intelligence-Enhanced Diagnosis

Abstract Health care transition, or HCT, is the process of adolescents and young adults moving from a child/family-centered model of health care to an adult/patient-centered model of health care. Healthcare providers have an essential role in this process which can be especially challenging for individuals with medical or special healthcare needs. Neurofibromatosis type 1 (NF1) is a complex multisystem disorder requiring lifelong medical surveillance, education, and psychosocial support. This review highlights the transition needs of NF1 patients and provides resources for both clinicians and families to facilitate HCT in this population. The authors propose a framework for the development of an effective NF1 transition program by using the Six Core Elements model of the Got Transition program, reviewing existing literature, and incorporating author experiences in the care and transition of NF1 patients.

Code status is a label in the medical record indicating a patient's wishes for end-of-life (EOL) care in the event of a cardiopulmonary arrest. People with intellectual disabilities had a higher risk of both diagnosis and mortality from coronavirus infections (COVID-19) than the general population. Clinicians and disability advocates raised concerns that bias, diagnostic overshadowing, and ableism could impact the allocation of code status and treatment options, for patients with intellectual disabilities, including Down syndrome (DS). To study this, retrospective claims data from the Vizient® Clinical Data Base (used with permission of Vizient, all rights reserved.) of inpatient encounters with pneumonia (PNA) and/or COVID-19 at 825 hospitals from January 2019 to June 2022 were included. Claims data was analyzed for risk of mortality and risk of "Do Not Resuscitate" (DNR) status upon admission, considering patient age, admission source, Elixhauser comorbidities (excluding behavioral health), and DS. Logistic regression models with backward selection were created. In total, 1,739,549 inpatient encounters with diagnoses of COVID-19, PNA, or both were included. After controlling for other risk factors, a person with a diagnosis of DS and a diagnosis of COVID-19 PNA had 6.321 odds ratio of having a DNR status ordered at admission to the hospital compared with those with COVID-19 PNA without DS. The diagnosis of DS had the strongest association with DNR status after controlling for other risk factors. Open and honest discussions among healthcare professionals to foster equitable approaches to EOL care and code status are needed.

Retrospective review of the code status of individuals with Down syndrome during the COVID-19 era.


 Studies have suggested that autistic individuals are as much as 30% more likely to receive a cancer diagnosis which may be associated with co-occurring IDD or birth defects. Following a diagnosis of cancer, outcomes have been documented to be significantly worse for autistic individuals. Autistic individuals experience numerous barriers to care across healthcare settings, including a lack of appropriate communication with providers, a lack of accommodating healthcare environments, lack of mental health support, and too few providers who are trained in working with individuals with autism or IDD. This leads to numerous negative health outcomes, including lower likelihood of having a regular source of care, lower satisfaction with healthcare, reduced screening utilization, delays in recognizing early symptoms of disease, higher ED utilization, and anxiety and stress associated with healthcare visits.
 We report on the results of a recent Medical Oncology provider survey conducted from 10/31/22 - 12/16/22 to evaluate for opportunities to address barriers to care facing individuals with autism and/or IDD. Of the 49 respondents comprised of physicians and nurse practitioners, 93.9% (46) noted receiving five or fewer hours of specific training or education regarding caring for populations with IDD. Additionally, providers cited the following barriers most commonly related to delivery care to patient with IDD: Lack of strategies to enhance communication on site (32, 65.3%), Inadequate time allotted for visits (28, 57.1%), Inadequate staff training and education related to this group (27, 55.1%), Limited resources to support vulnerable or lower socio-economic status populations (22, 44.9%), and Fragmentation of care (19, 38.8%).
 The Sidney Kimmel Cancer Center and the Jefferson Center for Autism & Neurodiversity have collaborated to develop a culturally competent care design aimed at understanding the needs of our neurodiverse population through a joint research effort. The results of our Medical Oncology provider survey identified the need for training of providers and staff to optimize the patient experience, creation of accessible cancer screenings, and the adoption of an environment that supports the sensory and communication abilities and needs of neurodivergent patients. Providers that adopt best practices in the care of autistic and/or IDD individuals have noted that patients and families report marked improvement in the rating of their patient experience in the visit. The desired product is care plans, appropriate medical settings, and trained providers that will meet the needs of this population and improve overall health outcomes.
 Citation Format: Avnish K. Bhatia, Alexander Fossi, Brooke L. Goodspeed, Jane Tobias, Christopher McNair, Dwight McBee, Wendy Ross. The conception of an Oncology Neurodiversity Work Group to address cancer disparity for individuals with autism and intellectual or developmental disability (IDD) at the Sidney Kimmel Cancer Center [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 2 (Clinical Trials and Late-Breaking Research); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(8_Suppl):Abstract nr LB138.

Abstract LB138: The conception of an Oncology Neurodiversity Work Group to address cancer disparity for individuals with autism and intellectual or developmental disability (IDD) at the Sidney Kimmel Cancer Center

S-1-1 Peripheral markers in obsessive-compulsive disorder: Effect of treatments

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Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review

Retrospective review of the code status of individuals with Down syndrome during the COVID-19 era.

Abstract LB138: The conception of an Oncology Neurodiversity Work Group to address cancer disparity for individuals with autism and intellectual or developmental disability (IDD) at the Sidney Kimmel Cancer Center

S-1-1 Peripheral markers in obsessive-compulsive disorder: Effect of treatments