A Case of Refractory Angioedema.

Angioedema is an acute disorder that affects mucous membranes and the deepest layers of the skin along with underlying tissue, marked by rapid swelling, large welts, and pain. There are 3 major subtypes of angioedema: mast-cell mediated, bradykinin-mediated, and multifactorial or unclear mechanism subtype. The most common subtype of bradykinin-mediated angioedema is ACE-inhibitor induced, which disproportionately affects African-Americans. It is most often self-limiting and usually responds to the withdrawal of the offending agent. The prolonged duration of angioedema is uncommon in the absence of a persistent stimulus, though it is more likely when there is an abnormality of the metabolic pathways, such as in hereditary angioedema or other gene polymorphisms affecting the complement system. We present a case of severe angioedema that persisted for over a month and required a tracheostomy to manage the airway.

Sleep Challenges and Interventions in Children With Visual Impairment.

PURPOSE: To examine sleep patterns in a large and heterogeneous group of children with visual impairment. METHODS: A cross-sectional survey of parents of children with visual impairment was offered via the National Federation of the Blind and the National Organization for Albinism and Hypopigmentation. RESULTS: Complete survey results were available for 72 participants, aged 1 to 16 years. Parents of 52 (72%) children reported that their child had cycles of good sleep and bad sleep, and 50 (69%) reported that their child's sleep patterns caused significant stress for them or their family. Scores on the Childhood Sleep Habits Questionnaire (CSHQ) increased (> 41) in 64 (89%) children, indicating a likely clinically significant sleep problem. When compared to normative data from children aged 4 to 10 years, children in the current sample scored higher (more sleep problems) on all eight subscales on the CSHQ. The presence of comorbid developmental delay was most strongly associated with sleep problems. Supplemental melatonin and improving daytime and nighttime schedules or routines were reported as the most helpful for sleep. Many families reported a need for further information regarding melatonin use as a supplement. CONCLUSIONS: A high proportion of children with visual impairment experience clinically meaningful sleep problems, regardless of degree of light perception or visual acuity. There is a strong need for increased awareness and screening for sleep problems in this population. Potential treatment modalities, including supplemental melatonin, should be discussed with families. [J Pediatr Ophthalmol & Strabismus. 2022;59(2):77-86.].

Child Developmental Delays and Disorders: Autism Spectrum Disorder.

The understanding of autism spectrum disorder (ASD) has changed over the past generation, with recognition of a broader spectrum of severity and a wide diversity of clinical manifestations and co-occurring conditions. Estimates of ASD prevalence in the United States have increased from 2 to 4 per 10,000 in the 1960s to 1 in 54 today. Early screening and diagnosis followed by intensive speech and behavioral therapies can make a substantial difference in outcomes for children with ASD.

Palliative Care's Role Managing Cancer Pain During the Opioid Crisis: A Qualitative Study of Patients, Caregivers, and Clinicians.

CONTEXT: Patients with cancer face symptoms because of disease and treatment, and pain is common and complex. The opioid crisis may complicate patients' and clinicians' experiences of managing pain in cancer care. OBJECTIVES: In our study of perceptions and experiences with palliative care (PC) at an outpatient cancer center, we examined communication around symptom management throughout cancer care, and pain and its management emerged as particularly salient. The objective of this article is to describe, from the perspectives of patients, caregivers, and oncology health care professionals, the role of PC in navigating the complicated dynamics of pain management amidst the opioid crisis. METHODS: A qualitative descriptive study with grounded theory components was designed to investigate experiences with and perceptions of specialist PC and symptom management, including pain. Interviews were audiorecorded and transcribed, and focused coding identified themes related to pain and pain management from all three perspectives. RESULTS: About 44 patients, caregivers, and non-PC health care professionals completed interviews. Patients with cancer and their caregivers had many concerns about pain management and were specifically concerned about opioid use and stigma. For patients, PC improved pain management and helped to destigmatize appropriate pain management. Oncology clinicians reported that partnering with PC facilitated complex pain management and also provided moral support around difficult opioid recommendations for patients. CONCLUSION: PC offers the potential to uniquely support both patients and other oncology professionals in optimally navigating the complexity around pain management for cancer care in the midst of the opioid crisis.

Narrative Symposium: Patient and Research Participant experiences with Genetic Testing.

Twelve personal narratives address the challenges, benefits, and pitfalls of genetic testing. Three commentary articles explore these stories and suggest lessons that can be learned from them. The commentators come from backgrounds that include bioethics, public health, psychology, and philosophy.

Ethical challenges for accountable care organizations: a structured review.

BACKGROUND: Accountable care organizations (ACOs) are proliferating as a solution to the cost crisis in American health care, and already involve as many as 31 million patients. ACOs hold clinicians, group practices, and in many circumstances hospitals financially accountable for reducing expenditures and improving their patients' health outcomes. The structure of health care affects the ethical issues arising in the practice of medicine; therefore, like all health care organizational structures, ACOs will experience ethical challenges. No framework exists to assist key ACO stakeholders in identifying or managing these challenges. METHODS: We conducted a structured review of the medical ACO literature using qualitative content analysis to inform identification of ethical challenges for ACOs. RESULTS: Our analysis found infrequent discussion of ethics as an explicit concern for ACOs. Nonetheless, we identified nine critical ethical challenges, often described in other terms, for ACO stakeholders. Leaders could face challenges regarding fair resource allocation (e.g., about fairly using ACOs' shared savings), protection of professionals' ethical obligations (especially related to the design of financial incentives), and development of fair decision processes (e.g., ensuring that beneficiary representatives on the ACO board truly represent the ACO's patients). Clinicians could perceive threats to their professional autonomy (e.g., through cost control measures), a sense of dual or conflicted responsibility to their patients and the ACO, or competition with other clinicians. For patients, critical ethical challenges will include protecting their autonomy, ensuring privacy and confidentiality, and effectively engaging them with the ACO. DISCUSSION: ACOs are not inherently more or less "ethical" than other health care payment models, such as fee-for-service or pure capitation. ACOs' nascent development and flexibility in design, however, present a time-sensitive opportunity to ensure their ethical operation, promote their success, and refine their design and implementation by identifying, managing, and conducting research into the ethical issues they might face.

"I wouldn't look at it as stress": conceptualizations of caregiver stress among low-income families of children with asthma.

Low-income caregivers of children with asthma experience multiple stressors, likely worsening family health. As part of Community Action Against Asthma's community-based participatory research partnership, researchers conducted 40 qualitative semi-structured interviews and quantitative surveys with low-income caregivers of children with asthma in Detroit, Michigan. Participants described daily childhood asthma experiences and completed scales including the Peds Quality of Life Family Impact Module and Zarit Burden Caregiver Scale. Quantitative scale findings suggested participants are moderately stressed or affected by their child's illness. While there was some accordance between qualitative and quantitative findings, qualitative findings additionally captured many relevant life stressors, seemingly overlooked or conflated in scale responses. Many participants described asthma as part of childrearing, rather than as a stressor or burden. Findings encourage improvement of clinical, psychometric assessments used to measure and address stressors that shape health for many families with children with asthma.

Nightwatch: Sleep Disruption of Caregivers of Children With Asthma in Detroit.

Caregiving for ill loved ones can affect sleep quality and quantity. Insufficient sleep has been associated with worse physical and mental health outcomes, and it is known to affect work performance and ability to accomplish necessary tasks. While some research has looked at the sleep of caregivers of loved ones with chronic illness and found that they experience poorer sleep, little is known about the impact of caring for a child with asthma on the caregiver's sleep and the ways in which their sleep may be affected. Community Action Against Asthma, a community-based participatory research partnership, conducted interviews with semistructured and open-ended questions with 40 caregivers of children with asthma who live in Detroit. Findings showed that caregivers regularly experience poor quality sleep because of sleeping lightly in order to listen for the child's symptoms, wake multiple times to check on the child because of worry, and provide care for child when he or she experiences symptoms in the middle of the night. Results of the Epworth Sleepiness Scale indicate that 12.5% of caregivers received a score of 16 or more, the score on the scale used to indicate likely presence of a sleep disorder, and 42.5% had a score of 10 or more, indicating excessive sleepiness. Sleep disturbance in caregivers is an underrecognized consequence of childhood asthma, with implications for providers caring for children with asthma.

Brief report: Stony Brook Guidelines on the ethics of the care of people with autism and their families.

The increased prevalence of autism spectrum disorders (ASD), with associated societal and clinical impacts, calls for a broad community-based dialogue on treatment related ethical and social issues. The Stony Brook Guidelines, based on a community dialogue process with affected individuals, families and professionals, identify and discuss the following topics: treatment goals and happiness, distributive justice, managing the hopes for a cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. Our guidelines, based not on "top-down" imposition of professional expertise but rather on "bottom-up" grass roots attention to the voices of affected individuals and families speaking from experience, can inform clinical practice and are also meaningful for the wider social conversation emerging over the treatment of individuals with ASD.

A life course perspective on stress and health among caregivers of children with asthma in Detroit.

Low-income caregivers raising children with asthma experience many obstacles to their own health, including stress. To understand and describe their daily experiences, researchers conducted 40 qualitative interviews supplemented with descriptive quantitative surveys in Detroit, Michigan, as part of a community-based participatory research partnership of Community Action Against Asthma. Prevalence of chronic illness is noticeably higher among participants than the general US population. Caregivers identified stress processes that may influence disproportionate health outcomes and risk-related behaviors over their lifetime. Applying a life course perspective, findings suggest that public health interventions should address family-level comorbidities, increase instrumental social support, and acknowledge practical coping mechanisms.

Examining the contextual effects of neighborhood on out-of-hospital cardiac arrest and the provision of bystander cardiopulmonary resuscitation.

OBJECTIVE: To understand the association between neighborhood and individual characteristics in determining whether or not bystanders perform cardiopulmonary resuscitation (CPR) in cases of out-of-hospital cardiac arrest (OHCA). METHODS: Between October 1, 2005 to November 30, 2008, 1108 OHCA cases from Fulton County (Atlanta), GA, were eligible for bystander CPR. We conducted multi-level non-linear regression analysis and derived Empirical Bayes estimates for bystander CPR by census tract. RESULTS: 279 (25%) cardiac arrest victims received bystander CPR. Provision of bystander CPR was significantly more common in witnessed events (odds ratio [OR] 1.64; 95% confidence interval [CI] 1.21-2.22, p < 0.001) and those that occurred in public locations (OR 1.67; 95% CI 1.16-2.40, p < 0.001). Other individual-level characteristics were not significantly associated with bystander CPR. Cardiac arrests in the census tracts that rank in the highest income quintile, as compared to the lowest income quintile were much more likely (OR 4.98; 95% CI 1.65-15.04) to receive bystander CPR. CONCLUSION: Cardiac arrest victims in the highest income census tracts were much more likely to receive bystander CPR than in the lowest income census tracts, even after controlling for individual and arrest characteristics. Low-income neighborhoods may be particularly appropriate targets for community-based CPR training and awareness efforts.

Small area variations in out-of-hospital cardiac arrest: does the neighborhood matter?

BACKGROUND: The incidence and outcomes of out-of-hospital cardiac arrest vary widely across cities. It is unknown whether similar differences exist at the neighborhood level. OBJECTIVE: To determine the extent to which neighborhoods have persistently high rates of cardiac arrest but low rates of bystander cardiopulmonary resuscitation (CPR). DESIGN: Multilevel Poisson regression of 1108 cardiac arrests from 161 census tracts as captured by the Cardiac Arrest Registry to Enhance Survival (CARES). SETTING: Fulton County, Georgia, between 1 October 2005 to 30 November 2008. MEASUREMENTS: Incidence of cardiac arrest, by census tract and year and by rates of bystander CPR. RESULTS: Adjusted rates of cardiac arrest varied across neighborhoods (interquartile range [IQR], 0.57 to 0.73 per 1000 persons; mean, 0.64 per 1000 persons [SD, 0.11]) but were stable from year to year (intraclass correlation, 0.36 [95% CI, 0.26 to 0.50]; P < 0.001). Adjusted bystander CPR rates also varied by census tract (IQR, 19% to 29%; mean, 25% [SD, 10%]). LIMITATION: Analysis was based on data from a single county. CONCLUSION: Surveillance data can identify neighborhoods with a persistently high incidence of cardiac arrest and low rates of bystander CPR. These neighborhoods are promising targets for community-based interventions. PRIMARY FUNDING SOURCE: Robert Wood Johnson Foundation Clinical Scholars Program, National Institutes of Health, and Centers for Disease Control and Prevention.

Asthma mitigation strategies: professional, charitable, and community coalitions.

BACKGROUND: Asthma symptoms, severity, and mortality are known to be affected by personal, family, and neighborhood social factors. Many groups have become involved in asthma research, education, and activism in the past 20 years. This study explores the approaches to asthma taken by community-based organizations compared with those taken by other organizations that have a focus on asthma. METHODS: Priorities in asthma research and intervention were assessed through interviews with representatives of urban community-based participatory research (CBPR) coalitions; interviews with staff from charities focused on asthma, allergy, or lung diseases; interviews with physicians and scientists studying and treating asthma; participation in community forums; and participant observation of urban asthma coalitions. Interviews and data analysis were conducted in 2008. RESULTS: There are marked differences in priorities and approaches to asthma among experts in the field, organizations and coalitions at the national and local levels, and other stakeholders in asthma research and activism. CBPR coalitions are more likely than asthma-focused organizations to explore environmental and community-level structural factors that exacerbate asthma or complicate its management, while disease-focused organizations, especially physician specialty groups, place more emphasis on individual-level factors. CBPR coalitions have been particularly strong in producing the data needed to demonstrate that individual communities are affected by pollution hot spots or that local neighborhoods lack geographic access to affordable medical care, and in providing this data to improve local policy-making. CONCLUSIONS: Because of its focus on structural rather than individual factors, CBPR has helped to broaden the debate on asthma beyond clinical care and education into social and environmental justice.