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Limited data exist in the specific content of pediatric outpatient ethics consults as compared to inpatient ethics consults. Given the fundamental differences in outpatient and inpatient clinical care, we aimed to describe the distinctive nature of ethics consultation in the ambulatory setting. This is a retrospective review at a large, quaternary academic center of all outpatient ethics consults in a 6-year period. Encounter-level demographic data was recorded, and primary ethical issue and contextual features were identified using qualitative conceptual content analysis. A total of 48 consults were identified representing 44 unique patients. The most common primary ethical issue was beneficence and best interest concern comprising 20 (42%) consults, followed by refusal of recommended treatment comprising 11 (23%) consults and patient preference/assent comprising 5 (10%) consults. The most common contextual features were staff-family communication dispute/conflict comprising 28 (58%) consults, followed by legal involvement comprising 25 (52%) consults and quality of life comprising 19 (40%) consults. The most common consulting specialty was hematology/oncology. Ethical issues encountered in the provision of outpatient pediatric care are distinct and differ from those in inpatient consults. Further research is necessary to identify strategies and educational gaps in outpatient ethics consultation to increase its effectiveness and utilization.
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PURPOSE: To characterize the primary ethical issue and contextual features of ethics consultation for patients aged 18-26 years based on setting (adult vs. pediatric). METHODS: A retrospective review of 965 ethics consultation notes to identify patients aged 18-26 years cared for in the pediatric or adult setting between January 1, 2016-December 31, 2020. We collected demographic information and used conceptual content analysis to identify the primary ethical issue and contextual features for each consult and analyzed these using descriptive statistics. RESULTS: We identified 46 consults (30 adult and 16 pediatric) for 40 unique patients (28 adult and 12 pediatric). The median age was 19 years in the pediatric setting and 24 in the adult setting. Fifty-three percent were female, 95% non-Hispanic, 68% White, and 76% were inpatient. The primary ethical issue in the adult setting was Refusal of Recommended Treatment (20%), while the dominant contextual issue was Communication Disputes/Conflicts Between the Staff and Patient (23%). The primary ethical issue for the pediatric setting was Goals of Care (31%) and the dominant contextual feature was concerns for Quality of Life (31%). DISCUSSION: The primary ethical issues and related contextual features this population experiences differ based on setting. Improved understanding of adolescent and young adult development, especially related to values formation, decision-making, and communication skills training may ameliorate some of these challenges. Referral patterns for this age group overall and particularly for patients on the ends of the spectrum and inpatients raise concerns for ethics consultation use. Further education about ethics services is recommended.
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BACKGROUND: Hereditary angioedema (HAE) is a rare condition characterized by potentially fatal, recurrent episodes of painful swelling. Whereas there are limited studies evaluating the quality of life of individuals with HAE, none have evaluated the impact of HAE on older adults. OBJECTIVE: To evaluate the effect of HAE on older adults through qualitative methodology. METHODS: A group of 3 physicians with extensive research and clinical experience in HAE developed a focus group guidebook highlighting issues of importance to older adults. A total of 17 patients with HAE (type I or II) aged 60 years and older participated in focus groups. Three independent reviewers coded each focus group transcript using a thematic saturation approach. RESULTS: Reviewers identified 7 core themes from the focus groups. The themes identified encompassed the following: (1) challenges with securing medications and insurance concerns; (2) the experience of living with HAE before the advent of newer and more effective therapeutic options; (3) a worsening of HAE attack frequency and severity with aging; (4) the effects of comorbid conditions such as arthritis, memory loss, and irritable bowel syndrome; (5) changes in HAE with menopause; and (6) changing perspective on HAE with age, the effect of HAE on interpersonal relationships including the decision to have children, and goals for future care and research including support groups and a desire to be included in clinical trials. CONCLUSION: Older adults with HAE have specific challenges and concerns that may be unique compared with younger populations. Health care providers should address these to provide optimal care.
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Angioedemas Hereditarios , Médicos , Niño , Femenino , Humanos , Persona de Mediana Edad , Anciano , Angioedemas Hereditarios/tratamiento farmacológico , Calidad de Vida , Enfermedades RarasRESUMEN
Background: Mask use is recommended to reduce the transmission of severe acute respiratory syndrome coronavirus 2. The safety of mask use in adults and children with asthma is unknown. Objective: The objective of this study is to evaluate the effect of mask use on peripheral oxygen saturation (SpO2) in those with and those without asthma. Methods: A two-stage cross-sectional study was performed. In the first stage, the SpO2 concentration in adults and children with and without asthma was measured with the adults and children at rest during mask use. In the second stage, children years 6-17 performed a 6-minute walk test while wearing masks. The SpO2 concentration was measured before the exercise and at 3 and 6 minutes into exercise. Subjective dyspnea was evaluated by using the Pediatric Dyspnea Scale (PDS). Results: In the first stage, SpO2 levels in 393 subjects were analyzed. In the second stage, 50 pediatric subjects were included, 25 with and 25 without asthma. There was no difference in SpO2 levels between those with and those without asthma in adults and children wearing masks while at rest, with median SpO2 98% in both groups. There was no difference in oxygen saturation or reported level of dyspnea between the children with asthma and children without asthma performing the 6-minute walk test while wearing masks. Median SpO2 levels were at or near 99% in the asthma and non-asthma groups at all time points. Median PDS scores were similar between the asthma and non-asthma groups. Conclusion: Mask use did not affect SpO2 in adults and children at rest or in children performing low-to-moderate intensity exercise. These findings were consistent in those with and without asthma.
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Asma , Saturación de Oxígeno , Adulto , Humanos , Niño , Estudios Transversales , Disnea/etiología , SARS-CoV-2RESUMEN
The NF-κB pathway is a cardinal signaling pathway that has been implicated in the development of a diverse range of clinical diseases. Numerous cellular processes converge on this pathway, which results in cell proliferation and survival. Defects in this pathway and in its upstream regulators have been described as causing immunodeficiency. However, there is a growing body of literature connecting autoimmune and autoinflammatory conditions to NF-κB pathway dysfunction. This review serves as a current appraisal of the literature of these disorders.
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Enfermedades Autoinmunes , Enfermedades Autoinflamatorias Hereditarias , Humanos , FN-kappa B , Autoinmunidad , Transducción de Señal , Enfermedades Autoinflamatorias Hereditarias/genética , InflamaciónRESUMEN
BACKGROUNDFood allergy (FA) is a growing health problem requiring physiologic confirmation via the oral food challenge (OFC). Many OFCs result in clinical anaphylaxis, causing discomfort and risk while limiting OFC utility. Transepidermal water loss (TEWL) measurement provides a potential solution to detect food anaphylaxis in real time prior to clinical symptoms. We evaluated whether TEWL changes during an OFC could predict anaphylaxis onset.METHODSPhysicians and nurses blinded to the TEWL results conducted and adjudicated the results of all 209 OFCs in this study. A study coordinator measured TEWL throughout the OFC and had no input on the OFC conduct. TEWL was measured 2 ways in 2 separate groups. First, TEWL was measured using static, discrete measurements. Second, TEWL was measured using continuous monitoring. Participants who consented provided blood samples before and after the OFCs for biomarker analyses.RESULTSTEWL rose significantly (2.93 g/m2/h) during reactions and did not rise during nonreacting OFCs (-1.00 g/m2/h). Systemic increases in tryptase and IL-3 were also detected during reactions, providing supporting biochemical evidence of anaphylaxis. The TEWL rise occurred 48 minutes earlier than clinically evident anaphylaxis. Continuous monitoring detected a significant rise in TEWL that presaged positive OFCs, but no rise was seen in the OFCs that resulted in no reaction, providing high predictive specificity (96%) for anaphylaxis against nonreactions 38 minutes prior to anaphylaxis onset.CONCLUSIONSDuring OFCs, a TEWL rise anticipated a positive clinical challenge. TEWL presents a monitoring modality that may predict food anaphylaxis and facilitate improvements in OFC safety and tolerability.