Transition experiences and health care utilization among young adults with type 1 diabetes

Background: The purpose of this study was to describe the current status of adult diabetes care in young adults with type 1 diabetes and examine associations between health care transition experiences and care utilization. Methods: We developed a survey to assess transition characteristics and current care in young adults with type 1 diabetes. We mailed the survey to the last known address of young adults who had previously received diabetes care at a tertiary pediatric center. Results: Of 291 surveys sent, 83 (29%) were undeliverable and three (1%) were ineligible. Of 205 surveys delivered, 65 were returned (response rate 32%). Respondents (mean age 26.6 ± 3.0 years, 54% male, 91% Caucasian) transitioned to adult diabetes care at a mean age of 19.2 ± 2.8 years. Although 71% felt mostly/completely prepared for transition, only half received recommendations for a specific adult provider. Twenty-six percent reported gaps exceeding six months between pediatric and adult diabetes care. Respondents who made fewer than three diabetes visits in the year prior to transition (odds ratio [OR] 4.5, 95% confidence interval [CI] 1.2–16.5) or cited moving/relocation as the most important reason for transition (OR 6.3, 95% CI 1.3–31.5) were more likely to report gaps in care exceeding six months. Patients receiving current care from an adult endocrinologist (79%) were more likely to report at least two diabetes visits in the past year (OR 6.0, 95% CI 1.5–24.0) compared with those receiving diabetes care from a general internist/adult primary care doctor (17%). Two-thirds (66%) reported receiving all recommended diabetes screening tests in the previous year, with no difference according to provider type. Conclusion: In this sample, transition preparation was variable and one quarter reported gaps in obtaining adult diabetes care. Nevertheless, the majority endorsed currently receiving regular diabetes care, although visit frequency differed by provider type. Because locating patients after transition was incomplete, our findings suggest the need for standardized methods to track transitioning patients

An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken

BACKGROUND: In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved. METHODS: We used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics. RESULTS: Whilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health. CONCLUSION: Our findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research

Manual of pediatric therapeutics /

Includes bibliographical references and index.Allergic and immunodeficiency disorders / Bryce A. Binstadt and Lynda Schneider -- Dermatologic disorders / Stephen Gellis -- Inflammatory disorders / Robert Sundel -- Musculoskeletal disorders / Richard G. Bachur and Peter M. Waters -- Neurologic disorders / Omar Khwaja, Alexander Rotenberg, and Scott L. Pomeroy -- Management of the child with developmental disabilities and specialized health care needs / Laurie Glader and Nedda Hobbs -- Behavioral disorders / Carolyn Bridgemohan and Barbara Burr -- Formulary / Shannon F. Manzi and Brenda Dodson.Caring for children / John W. Graef, Joanne Wolfe, and Christina Ullrich -- Principles of normal newborn, well-child, and adolescent care / Wanessa Risko and Sara Forman -- Fluid and electrolytes / Cynthia Wong and John T Herrin -- Antimicrobials and infectious diseases / Marvin B. Harper and Charlotte A. Mao -- Management of sick newborn / Tanzeema Hossain and Anne Hansen -- Emergency and intensive care / Mark I. Neuman, Michael L. McManus, and Andrew J. Capraro -- Poisoning / Alan Woolf --Renal disorders / Michelle A. Baum and Michael J.G. Somers -- Cardiac disorders / John M. Costello and Edward P. Walsh -- Management of nutritional, gastrointestinal, and hepatic disorders / Douglas S. Fishman and Athos Bousvaros -- Metabolic disorders / Edward Neilan and Deborah Marsden -- Endocrine disorders / Joseph I. Wolfsdorf and Diego Botero -- Prepubertal and adolescent gynecologic disorders / Susan H. Gray and Marc R. Laufer -- Hematologic disorders / Christy Duncan and Matthew M. Heeney -

Diabetic ketoacidosis in the time of COVID-19 and resource-limited settings: role of subcutaneous insulin

The International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice Consensus Guidelines 2018 for management of diabetic ketoacidosis (DKA) and the hyperglycemic hyperosmolar state 1, 2 provide comprehensive guidance for management of DKA in young people (Figure 1). Intravenous (IV) infusion of insulin remains the treatment of choice for treating DKA; however, the policy of many hospitals around the world requires admission to an intensive care unit (ICU) for IV insulin infusion. During the coronavirus 2019 (COVID-19) pandemic or other settings where intensive care resources are limited, ICU services may need to be prioritised or may not be appropriate due to risk of transmission of infection to young people with type 1 or type 2 diabetes. The aim of this guideline, which should be used in conjunction with the ISPAD 2018 guidelines1 , is to ensure that young individuals with DKA receive management according to best evidence in the context of limited ICU resources. Specifically, this guideline summarises evidence for the role of subcutaneous (SC) insulin in treatment of uncomplicated mild to moderate DKA in young people and may be implemented if administration of IV insulin is not an option. The levels of evidence follow the American Diabetes Association (ADA) evidence-grading system for 'Standards of Medical Care in Diabetes' and are presented in Table 2.3 This article is protected by copyright. All rights reserved