Two decades of patient advocacy.

The European Federation of Neurological Associations (EFNA) brings together European umbrella organizations of pan-European neurological patient advocacy groups (www.efna.net) and strives to improve the quality of life of people living with neurological conditions and to work towards relieving the immense social and economic burden on patients, carers and society in general. This article provides an overview of EFNA's activities and achievements over the past two decades, the evolution of patient advocacy during those years, and the increased role and impact of the European patient voice in the neurological arena.

Dietary Exposure to Environmentally Relevant Levels of Chemical Contaminants Reduces Growth and Survival in Juvenile Chinook Salmon.

Chemical pollution can degrade aquatic ecosystems. Chinook salmon in contaminated habitats are vulnerable to health impacts from toxic exposures. Few studies have been conducted on adverse health outcomes associated with current levels and mixtures of contaminants. Fewer still address effects specific to the juvenile life-stage of salmonids. The present study evaluated contaminant-related effects from dietary exposure to environmentally relevant concentrations and mixture profiles in juvenile Chinook salmon from industrialized waterways in the U.S. Pacific Northwest using two end points: growth assessment and disease susceptibility. The dose and chemical proportions were reconstituted based on environmental sampling and analysis using the stomach contents of juvenile Chinook salmon recently collected from contaminated, industrialized waterways. Groups of fish were fed a mixture with fixed proportions of 10 polychlorinated biphenyls (PCBs), 3 dichlorodiphenyltrichloroethanes (DDTs), and 13 polycyclic aromatic hydrocarbons (PAHs) at five concentrations for 35 days. These contaminant compounds were selected because of elevated concentrations and the widespread presence in sediments throughout industrialized waterways. Fork length and otolith microstructural growth indicators were significantly reduced in fish fed environmentally relevant concentrations of these contaminants. In addition, contaminant-exposed Chinook salmon were more susceptible to disease during controlled challenges with the pathogen Aeromonas salmonicida. Our results indicate that dietary exposure to contaminants impairs growth and immune function in juvenile Chinook salmon, thereby highlighting that current environmental exposure to chemicals of potential management concern threatens the viability of exposed salmon.

Citrin: a novel food allergen in citrus seeds and citrus-derived pectin that shows cross-reactivity with cashew and pistachio.

BACKGROUND: Patients exquisitely sensitive to cashew/pistachio are at risk for allergic reactions to citrus seeds and pectin. OBJECTIVE: In this study, we sought to evaluate whether pectin is contaminated with citrus seeds, to identify a culprit antigen in citrus seeds, and to assess for cross-reactivity among allergens in citrus seeds, citrus pectin, and cashew or pistachio. METHODS: Proteins from orange seed coats, orange seed endosperms, lemon seeds, grapefruit seeds, citrus pectin, apple pectin, and grapefruit pectin were extracted. Protein concentrations in all extracts were determined and visualized using sodium dodecyl sulfate-polyacrylamide gel electrophoresis technique. Immunoglobulin E-binding capacity was determined with Western blot analyses and tandem mass spectrometry for the identification of the culprit allergen in citrus seeds and pectin. RESULTS: In subjects with citrus seed, pectin, and cashew allergies, there was strong immunoglobulin E-reactivity to bands between 17 to 28 kDa and 28 to 38 kDa. The tandem mass spectrometry analysis of these bands indicated the presence of citrin as the culprit allergen. Citrin and Ana o 2 are both 11S globulins belonging to the cupin superfamily, and significant homology was found between these proteins. CONCLUSION: Citrus pectin may be contaminated with citrus seeds. Citrin, a newly identified allergen in citrus seeds, seems to be the culprit antigen in citrus seeds and contaminated citrus pectin. Citrin is highly homologous with Ana o 2 in cashew and Pis v 2 in pistachio, suggesting potential for cross-reactivity and providing an explanation for co-allergenicity of cashew or pistachio, citrus seeds, and citrus pectin.

Investigating disparities in compliance of nursing pain reassessment for obstetrics and gynecology patients.

BACKGROUND: Racial and socioeconomic disparities, exacerbated during the COVID-19 pandemic and surrounding socio-political polarization, affect access to, delivery of, and patient perception of healthcare. Perioperatively, the bedside nurse carries the greatest responsibility of direct care, which includes pain reassessment, a metric tracked for compliance. OBJECTIVE: This study aimed to critically assess disparities in obstetrics and gynecology perioperative care and how these have changed since March 2020 using nursing pain reassessment compliance within a quality improvement framework. STUDY DESIGN: A retrospective cohort of 76,984 pain reassessment encounters from 10,774 obstetrics and gynecology patients at a large, academic hospital from September 2017 to March 2021 was obtained from Tableau: Quality, Safety and Risk Prevention platform. Noncompliance proportions were analyzed by patient race across service lines; a sensitivity analysis was performed excluding patients who were of neither Black nor White race. Secondary outcomes included analysis by patient ethnicity, body mass index, age, language, procedure, and insurance. Additional analyses were performed by temporally stratifying patients into pre- and post-March 2020 cohorts to investigate potential pandemic and sociopolitical effects on healthcare disparities. Continuous variables were assessed with Wilcoxon rank test, categorical variables were assessed with chi-squared test, and multivariable logistic regression analyses were performed (P<.05). RESULTS: Noncompliance proportions of pain reassessment did not differ significantly between Black and White patients as an aggregate of all obstetrics and gynecology patients (8.1% vs 8.2%), but greater differences were found within the divisions of Benign Subspecialty Gynecologic Surgery (Minimally Invasive Gynecologic Surgery + Urogynecology) (14.9% vs 10.70%; P=.03) and Maternal Fetal Medicine (9.5% vs 8.3%; P=.04). Black patients admitted to Gynecologic Oncology experienced lower noncompliance proportions than White patients (5.6% vs 10.4%; P<.01). These differences persisted after adjustment for body mass index, age, insurance, timeline, procedure type, and number of nurses attending to each patient with multivariable analyses. Noncompliance proportions were higher for patients with body mass index ≥35 kg/m2 within Benign Subspecialty Gynecology (17.9% vs 10.4%; P<.01). Non-Hispanic/Latino patients (P=.03), those ≥65 years (P<.01), those with Medicare (P<.01), and those who underwent hysterectomy (P<.01) also experienced greater noncompliance proportions. Aggregate noncompliance proportions differed slightly pre- and post-March 2020; this trend was seen across all service lines except Midwifery and was significant for Benign Subspecialty Gynecology after multivariable analysis (odds ratio, 1.41; 95% confidence interval, 1.02-1.93; P=.04). Though increases in noncompliance proportions were seen for non-White patients after March 2020, this was not statistically significant. CONCLUSION: Significant race, ethnicity, age, procedure, and body mass index-based disparities were identified in the delivery of perioperative bedside care, especially for those admitted to Benign Subspecialty Gynecologic Services. Conversely, Black patients admitted to Gynecologic Oncology experienced lower levels of nursing noncompliance. This may be in part be related to the actions of a Gynecologic Oncology nurse practioner at our institution who helps coordinate care for the division's postoperative patients. Noncompliance proportions increased after March 2020 within Benign Subspecialty Gynecologic Services. Although this study was not designed to establish causation, possible contributing factors include implicit or explicit biases regarding pain experience across race, body mass index, age, or surgical indication, discrepancies in pain management across hospital units, and downstream effects of healthcare worker burnout, understaffing, increased use of travelers, or sociopolitical polarization since March 2020. This study demonstrates the need for ongoing investigation of healthcare disparities at all interfaces of patient care and provides a way forward for tangible improvement of patient-directed outcomes by utilizing an actionable metric within a quality improvement framework.

Recent trends in food protein-induced enterocolitis syndrome (FPIES).

Food protein-induced enterocolitis syndrome (FPIES) was first described in detail in the late 20th century as a non-IgE-mediated food allergy characterized by delayed gastrointestinal symptoms after ingestion of a trigger food. Although the initial case series reported infants reacting to cow's milk- and soy-based formulas, we now recognize that FPIES affects patients across the age spectrum. This brief review highlights our evolving understanding of FPIES with a discussion of triggers, epidemiology, food challenges, and pathophysiology.

Age Differences in Determinants of Self-Rated Health among Recipients of Publicly Funded Home-and-Community-Based Services.

This research examined determinants of self-rated health (SRH) of publicly funded home-and-community-based services (HCBS) recipients and tested if the effects of determinants differ between older recipients and younger recipients with disabilities. Using Minnesota's data of 2015-2016 National Core Indicators - Aging and Disabilities survey (n = 3,426), this study revealed that functional status and community inclusion had both direct and indirect effects on SRH, with negative mood as a mediator. Community inclusion had a more pronounced effect on SRH in younger recipients than in older recipients. HCBS should address psychosocial needs and be tailored for recipients of different age groups.

Abdominal and robotic sacrocolpopexy costs following implementation of enhanced recovery after surgery.

OBJECTIVE: To compare perioperative costs and morbidity between open and robotic sacrocolpopexy after implementation of enhanced recovery after surgery (ERAS) pathway. METHODS: The present retrospective cohort study of patients undergoing open or robotic sacrocolpopexy (January 1, 2014, through November 30, 2017) used an ERAS protocol with liposomal bupivacaine infiltration of laparotomy incisions. Primary outcomes were costs associated with index surgery and hospitalization, determined with Medicare cost-to-charge ratios and reimbursement rates and adjusted for variables expected to impact costs. Secondary outcomes included narcotic use, length of stay (LOS), and complications from index hospitalization to postoperative day 30. RESULTS: For the total of 231 patients (open cohort, 90; robotic cohort, 141), the adjusted mean cost of robotic surgery was $3239 higher compared with open sacrocolpopexy (95% confidence interval [CI] $1331-$5147; P < 0.001). Rates were not significantly different for intraoperative complications (robotic, 4.3% [6/141]; open, 5.6% [5/90]; P = 0.754), 30-day postoperative complications (robotic, 11.4% [16/141]; open, 16.7% [15/90]; P = 0.322), or readmissions (robotic, 5.7% [8/141]; open, 3.3% [3/90]; P = 0.535). The percentage of patients dismissed on postoperative day 1 was greater in the robotic group (89.4% [126/141] vs. 48.9% [44/90], P < 0.001). CONCLUSIONS: Decreased LOS associated with ERAS provided significant cost savings with open sacrocolpopexy versus robotic sacrocolpopexy without adverse impacts on perioperative complications or readmissions.

Untargeted serum metabolomic analysis reveals a role for purinergic signaling in FPIES.

BACKGROUND: Food protein-induced enterocolitis syndrome (FPIES) is a non-IgE-mediated food allergy with a typical onset in infancy. Its symptoms are distinct from those of IgE-mediated food allergies and include severe repetitive vomiting, lethargy, and pallor. FPIES reactions are associated with TH17 cytokines and a systemic innate immune activation; however, the link between immune activation and symptoms is poorly understood. OBJECTIVE: Our aim was to use an untargeted metabolomics approach to identify novel pathways associated with FPIES reactions. METHODS: Serum samples were obtained before, during, and after oral food challenge (OFC) (10 subjects with FPIES and 10 asymptomatic subjects), and they were analyzed by untargeted metabolomics. Two-way ANOVA with false discovery rate adjustment was used for analysis of metabolites. Stomach and duodenal biopsy specimens from non-FPIES donors were stimulated with adenosine in vitro and serotonin measured by immunoassay. RESULTS: The levels of a total of 34 metabolites, including inosine and urate of the purine signaling pathway, were increased during OFCs performed on the patients with symptomatic FPIES compared with the levels found for asymptomatic subjects. Expression of the purine receptors P2RX7 and P2RY10 and the ectonucleotidase CD73 in peripheral blood was significantly reduced after OFC of the patients with FPIES. The level of the serotonin metabolite 5-hydroxyindoleacetate was significantly elevated after reaction. Adenosine stimulation of gastric and duodenal biopsy specimens from FPIES-free donors induced a significant release of serotonin, suggesting a link between purinergic pathway activation and serotonin release. CONCLUSIONS: Activation of the purinergic pathway during FPIES reactions provides a possible mechanism connecting inflammation and vomiting by triggering serotonin release from gastric and duodenal mucosa.

Update on Food Protein-Induced Enterocolitis Syndrome (FPIES).

PURPOSE OF REVIEW: Food protein-induced enterocolitis syndrome (FPIES) is a non-IgE-mediated food allergy characterized by delayed, and potentially severe, gastrointestinal symptoms. Since the advent of a specific diagnostic code and establishment of diagnostic guidelines, our understanding of this condition has grown. RECENT FINDINGS: FPIES affects patients from early infancy into adulthood. Any food can be a trigger, and common culprit foods vary geographically and by age. An understanding of the complex underlying immune mechanisms remains elusive, although studies show pan-leukocyte activation, cytokine release, and increased gastrointestinal permeability. Management involves trigger avoidance, and patients may benefit from the support of a dietitian to ensure adequate nutrient intake. Tolerance develops over time for most children, but due to the risk of severe symptoms, re-introduction of a suspected FPIES trigger is recommended only under supervision at an oral food challenge. Studies continue to evaluate the optimal challenge protocol. Caregivers of children with FPIES report high levels of anxiety and stress, which is attributed to the dramatic symptomatology, dietary restrictions, nutritional concerns, lack of confirmatory diagnostic tests, and limited tools for management of reactions. Our understanding of the FPIES diagnosis has improved over the last few decades, but there remain opportunities, particularly regarding discerning the pathophysiology and best management practices.

Impact of enhanced recovery implementation in women undergoing abdominal sacrocolpopexy.

OBJECTIVE: To assess the effect of Enhanced Recovery After Surgery (ERAS) with and without liposomal bupivacaine (LB) on opioid use, hospital length of stay (LOS), costs, and morbidity of women undergoing sacrocolpopexy. METHODS: Retrospective cohort of women who underwent abdominal sacrocolpopexy between April 1, 2009 and November 30, 2017. Costs for relevant healthcare services were determined by assigning 2017 charges multiplied by 2017 Medicare Cost Report's cost to charge ratios. Outcomes were compared among periods with multivariable regression models adjusted for age, American Society of Anesthesiologists score, and concurrent hysterectomy and posterior repair. RESULTS: Patients were subdivided into pre-ERAS (G1, n = 128), post-ERAS (G2, n = 83), and post-ERAS plus LB (G3, n = 91). The proportion of patients needing opioids during postoperative days 0-2 was significantly less for G3 (75.8%) compared with G1 (97.7%) and G2 (92.8%); P < 0.001). The median morphine equivalent units (MEU) with interquartile ranges, mean LOS, and adjusted mean standardized costs were significantly lower in G3 compared with the other two groups (35 [20-75] vs. 67 [31-109], and 60 [30-122] MEUs; 1.8 vs. 2.3 vs. 2.9 days; and $2391, $2975, and $3844, for G3, G2, and G1, respectively; P < 0.001). CONCLUSION: Implementation of an ERAS pathway led to significant decreases in opioid use, LOS, and costs. Supplementation with LB further improved these measures.

Patient perspectives on penicillin allergy and testing.

Background: Most patients who report penicillin allergy are found to tolerate penicillin later in life. Few studies have examined patients' understanding and beliefs about penicillin allergy and testing. Evaluating patients' perspectives may help identify ways to improve patient education and increase testing to de-label those who can tolerate penicillin. Objective: To better understand patient perspectives on penicillin allergy testing and to identify whether patient characteristics and beliefs impact completion of testing. Methods: Patients who were visiting our allergy clinics and had documentation of a penicillin allergy in the electronic medical record (EMR) were approached to complete a survey with regard to their reaction history and knowledge and/or perspectives about penicillin allergy and testing. Eighty-eight patients completed the survey, and their medical records were reviewed to collect results of penicillin testing. Results: Fewer than half of the patients (45.5%) who had EMR-documented penicillin allergy reported awareness that testing for penicillin allergy is available. Awareness of penicillin allergy testing was significantly associated with completion of testing, whereas other patient characteristics, such as education, income, and distance to the hospital, were not. Patients who scheduled a return visit for testing at the time of their initial visit were significantly more likely to follow through with testing. Most patients were interested in penicillin testing. For patients who were not interested, the most frequently cited reason was fear of adverse effects of testing. Conclusion: Among the patients who carried a penicillin allergy label, those who were aware of penicillin allergy testing were more likely to complete testing, and ease of scheduling contributed to higher rates of testing completion. Fear about adverse effects from testing was the most reported barrier. Our findings emphasized the importance of increasing awareness of the availability and safety of penicillin testing through patient education and collaboration with other specialties.