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

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.

A Descriptive, Correlational Study of Perceptions of Adult Kidney Transplant Recipients and Those Waiting for a Kidney Transplant About Managing Their Medications During a Pandemic.

Introduction: Little is known about COVID-19 impact on patient medication management. Research Question: The aim was to describe medication management, healthcare team interactions, and adherence during the COVID-19 pandemic in kidney transplant patients and those on the kidney transplant wait list. Design: Using a descriptive, correlational design 340 adults from a midwestern US transplant program were recruited. The Managing Medications in the Midst of a Pandemic Survey measured healthcare team encounters and medication management. The Basel assessment of adherence to medications scale measured medication adherence. Results: The response rate was 35% (119/340). During the pandemic, 88% had practiced/were currently practicing socially distancing, 85% had worn/were currently wearing a face mask in public, 18% had been/were currently diagnosed with COVID-19 and 82% received the vaccine. Medication management: 76% planned and organized their own medications. Healthcare team interactions: 89% met in the office, 20% via phone, 12% telehealth, and 13% delayed seeing a healthcare provider because of COVID-19 concerns. Pharmacy interactions: 11% changed their method of obtaining medications from pharmacy due to social distancing. Medication adherence implementation was problematic with 19% missing a dose; results from the binary logistic regression suggested that those with higher levels of education were more likely to report missing a dose. Conclusions: Patients acted to prevent COVID-19 but some still contracted the virus. The pandemic changed healthcare team medication management interactions. Adherence implementation problems were nearly 20%. Findings are relevant to the transplant healthcare team to understand the impact of a pandemic on patient/team interactions and medication adherence.

Development and implementation of a continuing care program for patients with intellectual and developmental disabilities in family medicine.

In the United States, individuals with intellectual and developmental disabilities (IDD) consistently experience health disparities. One factor is limited access to quality healthcare services equipped to meet the needs of those with IDD, particularly as they transition to adulthood. The purpose of this work is to describe the development and implementation of Jefferson's Continuing Care Program (JCCP), which was designed to address this care gap. We share how the idea, logistics, and support for the clinic were developed; how JCCP was designed to be uniquely accessible both via physical space and clinic flow; and how those challenges encountered have been crucial for fine-tuning optimal patient care. Since its inception in 2019, JCCP has made large strides towards educating the next generation of medical providers to care for patients with IDD. Looking to the future, JCCP plans to broaden its impact by serving more patients, continuing our advocacy and education work, and continuing to adapt to the needs of our community.

Navigating Uncertainty in Clinical Practice: A Workshop to Prepare Medical Students to Problem-Solve During Complex Clinical Challenges.

Introduction: Uncertainty is an inherent part of medicine. Prior work has trained medical students to better communicate diagnostic uncertainty; however, this work touches on only one aspect of the uncertainty students will face in practice. We developed a session to provide them with a taxonomy for categorizing the various types of uncertainty, as well as a framework to apply when navigating uncertainty during clinical challenges. These tools can help students make sense of uncertainty and determine actions in a complex health system. Methods: We designed a virtual workshop for third-year medical students at the end of their core clerkships. It included a didactic session followed by a small-group immersive unfolding case experience with several challenge points during which we tasked students with applying the framework, classifying the uncertainty domain, and discussing how they would problem-solve each scenario. Results: We conducted the workshop with 128 third-year medical students. We collected data through an anonymous postsession survey (86% response rate; 110 of 128 students). Most found the workshop useful (64%; 54 of 85), and a large number found the framework helpful in appraising uncertainty (47%; 42 of 89). A majority felt their perspectives on uncertainty changed after the workshop (66%; 73 of 110). Students integrated prior health systems science knowledge in their strategies to problem-solve each challenge. Discussion: This session provides a novel application of a sense-making framework and taxonomy for medical students to classify uncertainty. It offers a simple, low-cost, interactive, virtual activity that can be implemented at other institutions.

The Dearth of Disability Medical Education and a Partial Solution.

Issue: While over one-quarter of adult Americans have a disability, there is a paucity of disability-specific curricula in American medical schools and residency programs. Potential consequences of this educational dearth include persistent inaccessibility of health care facilities and delivery of inequitable health care to individuals with disabilities. Evidence: Several working groups have proposed disability-specific competencies for health professions education and means by which to integrate them into existing curricula. A limited number of medical schools and residency programs have formally introduced disability-specific materials into their curricula. To our knowledge, however, there are no generalist (internal medicine or family medicine) residency programs that offer specialized training in the clinical care of people with disabilities. Implications: Offering generalist physicians the opportunity to acquire the clinical and cognitive skills required to provide thorough and equitable health care to people with disabilities is critically important. There are too few physiatrists to see to their care needs. In this manuscript, we present a novel concentration in an Internal Medicine residency program in the care of individuals with a variety of disabilities. Our hope is that this work will initiate discussions among educational leaders about how to address the lack of graduate medical education-level training in disability care. We also hope it will afford program directors the opportunity to implement similar concentrations and tracks and will eventually produce a generation of generalists who are well-equipped to help care for people with disabilities.

Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities.

As many people with intellectual disabilities (ID) live longer, the need for access to quality palliative care (PC) rises. People with ID realize significant barriers and inequities in accessing health care and PC. The need for integrated disability and PC services with extensive collaboration is great. The following tips are for PC clinicians caring for people with ID, their families, caregivers, and the community. While patient-centered care is difficult to distill into "tips," this article, written by an interdisciplinary team of PC and ID specialists, offers resources and references to improve the care provided to people with ID and serious illnesses.

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

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.

Pneumonia and respiratory infections in Down syndrome: A scoping review of the literature.

Pneumonia and respiratory infections impact infants and children with Down syndrome; pneumonia is a leading cause of mortality in adults with Down syndrome. We aimed to review the literature to evaluate gaps and address key questions. A series of key questions were formulated a priori to inform the search strategy and review process; addressed prevalence, severity, etiology, risk factors, preventive methods, screening, and financial costs, potential benefits or harms of screening. Using the National Library of Medicine database, PubMed, detailed literature searches on pneumonia and respiratory infections in Down syndrome were performed. Previously identified review articles were also assessed. The quality of available evidence was then evaluated and knowledge gaps were identified. Forty-two relevant original articles were identified which addressed at least one key question. Study details including research design, internal validity, external validity, and relevant results are presented. Pneumonia and respiratory infections are more prevalent and more severe in individuals with Down syndrome compared to healthy controls through literature review, yet there are gaps in the literature regarding the etiology of pneumonia, the infectious organism, risk factors for infection, and to guide options for prevention and screening. There is urgent need for additional research studies in Down syndrome, especially in the time of the current COVID-19 pandemic.

Improving Immunization Coverage in Special Populations.

This highlights the key recommendations for immunization in the setting of chronic disease, children and adults with special needs, and health care providers. Immunization is an effective strategy to reduce the burden of suffering and cost of care from chronic disease. Standard child and adolescent and adult immunization schedules identify categories of high-risk conditions and chronic diseases. Clinicians need to develop systems to evaluate patients' risk factors and tailor immunization recommendations to their individual needs. Patients with intellectual disabilities, neurologic and neurodevelopmental disorders, and autism are at higher risk for vaccine-preventable illness and face significant health disparities.

Mindfulness, Education, and Exercise for age-related cognitive decline: Study protocol, pilot study results, and description of the baseline sample.

BACKGROUND/AIMS: Age-related cognitive decline is a pervasive problem in our aging population. To date, no pharmacological treatments to halt or reverse cognitive decline are available. Behavioral interventions, such as physical exercise and Mindfulness-Based Stress Reduction, may reduce or reverse cognitive decline, but rigorously designed randomized controlled trials are needed to test the efficacy of such interventions. METHODS: Here, we describe the design of the Mindfulness, Education, and Exercise study, an 18-month randomized controlled trial that will assess the effect of two interventions-mindfulness training plus moderate-to-vigorous intensity exercise or moderate-to-vigorous intensity exercise alone-compared with a health education control group on cognitive function in older adults. An extensive battery of biobehavioral assessments will be used to understand the mechanisms of cognitive remediation, by using structural and resting state functional magnetic resonance imaging, insulin sensitivity, inflammation, and metabolic and behavioral assessments. RESULTS: We provide the results from a preliminary study (n = 29) of non-randomized pilot participants who received both the exercise and Mindfulness-Based Stress Reduction interventions. We also provide details on the recruitment and baseline characteristics of the randomized controlled trial sample (n = 585). CONCLUSION: When complete, the Mindfulness, Education, and Exercise study will inform the research community on the efficacy of these widely available interventions improve cognitive functioning in older adults.

Co-occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines. Part II.

Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. Many of these conditions are of public health importance with the potential to develop screening recommendations to improve clinical care for this population. Our workgroup previously identified and prioritized co-occurring medical conditions in adults with DS. In this study, we again performed detailed literature searches on an additional six medical conditions of clinical importance. A series of key questions (KQ) were formulated a priori to guide the literature search strategy. Our KQs focused on disease prevalence, severity, risk-factors, methodologies for screening/evaluation, impact on morbidity, and potential costs/benefits. The available evidence was extracted, evaluated and graded on quality. The number of participants and the design of clinical studies varied by condition and were often inadequate for answering most of the KQ. Based upon our review, we provide a summary of the findings on hip dysplasia, menopause, acquired cardiac valve disease, type 2 diabetes mellitus, hematologic disorders, and dysphagia. Minimal evidence demonstrates significant gaps in our clinical knowledge that compromises clinical decision-making and management of these medically complex individuals. The creation of evidence-based clinical guidance for this population will not be possible until these gaps are addressed.

Daily Marital Tension and Symptom Severity in Older Adults With Diabetes or Osteoarthritis.

Background: Greater marital quality is associated with better psychological and physical health. The quality of daily marital interactions is likely to be especially important for individuals with chronic illness, but this question has received little attention. Purpose: Using data from two diary studies, the current study examined whether individuals with chronic illness would experience more severe symptoms on days with more marital tension due in part to greater negative affect on those days. Methods: The samples included individuals with knee osteoarthritis (OA, N = 145) or type 2 diabetes mellitus (T2DM, N = 129) and their spouses. Participants reported on daily marital interaction quality, affect, and symptom severity (patients only) for 22 days (knee OA) or 24 days (T2DM). Separate multilevel models were run for patients and spouses, controlling for the partner's marital tension and negative affect as well as both partners' daily marital enjoyment and positive affect. We examined same-day and across-day associations. Results: For individuals with T2DM or knee OA, more severe symptoms on days with more marital tension were due in part to their greater negative affect on those days. Individuals with knee OA who experienced more pain had more negative affect and marital tension the next day. Conclusions: Negative marital interactions may exacerbate physical symptoms. Effects of daily marital tension likely accumulate over time and have long-term implications for health.

Childhood Bullying: Implications for Physicians.

Childhood bullying is common and can lead to serious adverse physical and mental health effects for both the victim and the bully. In teenagers, risk factors for becoming a victim of bullying include being lesbian, gay, bisexual, or transgender; having a disability or medical condition such as asthma, diabetes mellitus, a skin condition, or food allergy; or being an outlier in weight and stature. An estimated 20% of youth have been bullied on school property, and 16% have been bullied electronically in the past year. Bullying can result in emotional distress, depression, anxiety, social isolation, low self-esteem, school avoidance/refusal, and substance abuse for the victim and the bully. Preventive measures include encouraging patients to find enjoyable activities that promote confidence and self-esteem, modeling how to treat others with kindness and respect, and encouraging patients to seek positive friendships. For those who feel concern or guilt about sharing their experiences, it may be useful to explain that revealing the bullying may not only help end the cycle for them but for others as well. Once bullying has been identified, family physicians have an important role in screening for its harmful effects, such as depression and anxiety. A comprehensive, multitiered approach involving families, schools, and community resources can help combat bullying. Family physicians are integral in recognizing children and adolescents who are affected by bullying-as victims, bullies, or bully- victims-so they can benefit from the intervention process.

Co-occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines.

Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. The United States Preventive Service Task Force (USPSTF) has developed criteria for prioritizing conditions of public health importance with the potential for providing screening recommendations to improve clinical care. The quality of existing evidence needed to inform clinical guidelines has not been previously reviewed. Using the National Library of Medicine (NLM) database PubMed, we first identified 18 peer reviewed articles that addressed co-occurring medical conditions in adults with DS. Those conditions discussed in over half of the articles were prioritized for further review. Second, we performed detailed literature searches on these specific conditions. To inform the search strategy and review process a series of key questions were formulated a priori. The quality of available evidence was then graded and knowledge gaps were identified. The number of participating adults and the design of clinical studies varied by condition and were often inadequate for answering all of our key questions. We provide data on thyroid disease, cervical spine disease, hearing impairment, overweight-obesity, sleep apnea, congenital heart disease, and osteopenia-osteoporosis. Minimal evidence demonstrates massive gaps in our clinical knowledge that compromises clinical decision-making and management of these medically complex individuals. The development of evidence-based clinical guidance will require an expanded clinical knowledge-base in order to move forward.

Large Outbreak of Neisseria meningitidis Serogroup C - Nigeria, December 2016-June 2017.

On February 16, 2017, the Ministry of Health in Zamfara State, in northwestern Nigeria, notified the Nigeria Centre for Disease Control (NCDC) of an increased number of suspected cerebrospinal meningitis (meningitis) cases reported from four local government areas (LGAs). Meningitis cases were subsequently also reported from Katsina, Kebbi, Niger, and Sokoto states, all of which share borders with Zamfara State, and from Yobe State in northeastern Nigeria. On April 3, 2017, NCDC activated an Emergency Operations Center (EOC) to coordinate rapid development and implementation of a national meningitis emergency outbreak response plan. After the outbreak was reported, surveillance activities for meningitis cases were enhanced, including retrospective searches for previously unreported cases, implementation of intensified new case finding, and strengthened laboratory confirmation. A total of 14,518 suspected meningitis cases were reported for the period December 13, 2016-June 15, 2017. Among 1,339 cases with laboratory testing, 433 (32%) were positive for bacterial pathogens, including 358 (82.7%) confirmed cases of Neisseria meningitidis serogroup C. In response, approximately 2.1 million persons aged 2-29 years were vaccinated with meningococcal serogroup C-containing vaccines in Katsina, Sokoto, Yobe, and Zamfara states during April-May 2017. The outbreak was declared over on June 15, 2017, after high-quality surveillance yielded no evidence of outbreak-linked cases for 2 consecutive weeks. Routine high-quality surveillance, including a strong laboratory system to test specimens from persons with suspected meningitis, is critical to rapidly detect and confirm future outbreaks and inform decisions regarding response vaccination.

Program Evaluation of the Inner South Community Health Oral Health Program for Priority Populations.

BACKGROUND: This study evaluated an Oral Health Program for Priority Populations (OHPPP) in the Inner South of Melbourne, Victoria. METHODS: Social Ecological Theory and the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework informed the study. It involved administering satisfaction questionnaires to 29 clients and conducting eight in-depth interviews and four focus group discussions with either clients, health care workers or partner agencies. RESULTS: Most (92%) clients surveyed felt more positive about their health as a result of the OHPPP. Three themes emerged from the qualitative analyses: 1) good oral health is central to improving general health; 2) the OHPPP is valuable; and 3) there are difficulties in implementing the OHPPP. CONCLUSIONS: Clients and service providers view the OHPPP as accessible and rewarding. Our findings point to the need for policies that recognise the greater treatment needs of disadvantaged populations and that streamline the provision of their dental care.

Independent and Interactive Effects of OPRM1 and DAT1 Polymorphisms on Alcohol Consumption and Subjective Responses in Social Drinkers.

BACKGROUND: The current study examined independent and interactive effects of polymorphisms of the mu opioid receptor gene (OPRM1, A118G) and variable number tandem repeats of the dopamine transporter gene (DAT1, SLC6A3) on alcohol consumption and subjective responses to alcohol in 127 young, healthy, social drinkers. METHODS: Participants completed an in-person assessment, which included self-reported alcohol drinking patterns and blood sampling for DNA, and in a second visit, a cumulative alcohol dosing procedure with subjective ratings across multiple time points and breath alcohol contents (0.03 to 0.1%). DNA was analyzed for OPRM1 AA versus AG/GG (*G) genotypes, DAT1 10-repeat allele (A10) versus 9 or lesser alleles (A9), and ancestral informative markers. RESULTS: There were significant epistatic interactions between OPRM1 and DAT1 genotypes. Subjective High Assessment Scale scores after alcohol consumption were highest in *G and A9 carriers, and lowest in *G and A10 carriers. Negative subjective effects were also highest in *G and A9 carriers. Effects were similar in a sensitivity analysis limited to Caucasian subjects. There were independent and epistatic interactions on drinking. The OPRM1 *G allele was independently associated with fewer heavy drinking days. The A9 allele was associated with a greater number of drinking days, which was attenuated in carriers of the *G allele. CONCLUSIONS: These findings highlight the biological importance of interactions between these 2 genes and interactions between brain opioid and dopamine systems.