General US Population Research Articles

Ensuring Racial and Ethnic Inclusivity in Facial Vascularized Composite Allotransplantation.

A comprehensive literature review was conducted by the authors of this review on PubMed/MEDLINE, and Embase databases from database inception to December 1, 2022 for studies published in the English and French languages. The search terms were (1) "face" OR "facial" AND (2) "transplant" OR "VCA" OR "vascularized composite allotransplantation" OR "vascularized composite allograft" OR "graft." Upon assessment of the racial and ethnic demographics of the 47 global cases of fVCA between 2005 and 2020, 36 were White, 10 were Asian, and one was Black. Sixteen of the 17 fVCA procedures performed in the United States involved White patients. The other patient self-identified as Black, equaling 6% of all US fVCA recipients. Our analysis showed that the ethnic and racial distribution of fVCA has not proportionally reflected the racial and ethnic demographics of the general US population, underscoring the risk of such healthcare imbalances. Although large-scale studies are needed before drawing definitive conclusions, leaders in the field should take preventive steps to avoid potential disparities. Further investigations into the factors that facilitate or prohibit access to fVCA referral and surgery will be necessary moving forward.

Fundraising from couples: New research on how households make giving decisions

This paper explores the question: ‘who decides?’ to provide a deeper look at how households make charitable giving decisions. The Women's Philanthropy Institute fielded a survey of the general US population to ask about charitable decision making. Couples are most likely to use joint decision making, but when one partner makes giving decisions for the household, it is more likely to be a woman. Going beyond previous research, this paper further unpacks the decision-making process. It also situates charitable giving within the context of other household financial decisions, finding that for many households, charitable giving may function similarly to a household bill. The study results have implications for a broad audience, including development professionals who want to better engage donor couples and households and encourage them to increase their giving and approach it in a more strategic way.

Hyperhidrosis: A targeted literature review of the disease burden.

Hyperhidrosis is a chronic skin condition characterized by excessive sweating. It poses a burden on affected people, reducing their quality of life and productivity. We undertook a targeted literature review (TLR) to gather current evidence on the epidemiology as well as the human and economic burden posed on patients with hyperhidrosis. Searches were performed in Medline database (access via OVID interface) and ICHUSHI database. Articles published between January 2000 and September 2020 that analyzed at least 50 patients were included. Sixty-four publications were identified and 38 publications covering a unique domain were selected to inform this TLR. The incidence of hyperhidrosis ranged from 0.13% in the UK to 0.28% in the USA, with a higher rate in females. The prevalence of hyperhidrosis varied from 2.8%-4.8% in the US general population to 18.40% in Chinese inpatients, while the prevalence of axillary hyperhidrosis varied from 1.4% in the US general population to 5.75% in Japanese employees/students. Due to excessive sweating, hyperhidrosis was reported to be a moderate-to-extreme limitation at work for the US patients, with 33.5% feeling unhappy. Patients' satisfaction was high post-treatment. Considerable costs were related to the treatment with botulinum toxin and surgery. Hospital stays for surgery lasted from 10 h to 3 days. The percentage of patients who sought a medical consultation varied from 6.3% for Japanese patients with primary focal hyperhidrosis to 51% for the US general population with any type of hyperhidrosis. There is limited evidence of the hyperhidrosis burden, particularly among Japanese patients; however, the burden was high and limited patients' daily functioning. Future actions should include implementation of educational programs to raise awareness of the condition, conduct of larger studies, and generation of more evidence. Understanding the nature of hyperhidrosis and the burden it poses is of utmost importance.

Quality of Life and Gastrointestinal Symptoms in Long-term Survivors of Pancreatic Cancer Following Pancreatoduodenectomy.

To describe long-term quality of life (QOL) and gastrointestinal (GI) symptoms in patients who underwent pancreatoduodenectomy for pancreatic cancer in the modern era. As advances in pancreatic cancer management improve outcomes, it is essential to assess long-term patient-reported outcomes after surgery. Patients who underwent curative intent pancreatoduodenectomy for pancreatic cancer between January 2011 and June 2019 from a single center were identified. Patients alive ≥3 years after surgery were considered long-term survivors (LTS). LTS who were alive in June 2022 received a 55-question survey to assess their QOL (EORTC-QLQ-C30) and GI symptoms (EORTC-PAN26 and Problem Areas in Diabetes Questionnaire). Responses were compared against population norms. Clinicodemographic characteristics in LTS versus non-LTS and survey completion were compared. Six hundred seventy-two patients underwent pancreatoduodenectomy for pancreatic cancer; 340 were LTS. One hundred thirty-seven patients of the 238 eligible to complete the survey responded (response rate: 58%). Compared to the US general population, LTS reported significantly higher QOL (75 vs 64; P <0.001), less nausea/vomiting, pain, dyspnea, insomnia, appetite loss, and constipation, but more diarrhea (all P <0.001). Most patients (n=136/137, 99%) reported experiencing postoperative GI symptoms related to pancreatic insufficiency (n=71/135, 53%), reflux (n=61/135, 45%), and delayed gastric emptying (n=31/136, 23%). Most patients (n=113/136, 83%) reported that digestive symptoms overall had little to no impact on QOL, and 91% (n=124/136) would undergo surgery again. Despite known long-term complications following pancreatoduodenectomy, cancer survivors appear to have excellent QOL. Specific long-term gastrointestinal symptoms data should be utilized for preoperative education and follow-up planning.

Does Long-Term Bowel Function Change After Colectomy for Colon Malignancy?

IntroductionCurrent understanding of bowel function after colectomy for colon cancer is informed by conflicting data, making preoperative patient counseling difficult. Our previous work demonstrates bowel movement frequency increases by postoperative follow-up, while overall function does not change. Long-term changes are unknown. We aimed to evaluate changes to patient-reported bowel function after colectomy for colon malignancy. MethodsThis is an observational study of patients that underwent colectomy for colon malignancy and completed the Colorectal Functional Outcome (COREFO) questionnaire at preoperative and 30-d postoperative clinic visits. Long-term bowel function was assessed using the same questionnaire via telephone or surveillance clinic visit. Mean domain and Total COREFO scores were compared baseline to long-term using paired t-tests. Quality of life analysis was obtained using the Patient Reported Outcome Measurement Information System-10 Global Health questionnaire for patients who completed this measure at surveillance visits or via telephone. ResultsSixty-six patients met inclusion criteria. Median time between baseline and long-term questionnaire completion was 16 mo (interquartile range 11-30). Stool-related aspects (pain and bleeding with bowel movements, anal skin irritation) improved significantly from baseline to long-term. There were no other differences in any domain or Total COREFO score. Patient Reported Outcome Measurement Information System-10 scores demonstrated quality of life equivalent to the general US population. ConclusionsOver the long-term, after colectomy for colon cancer, patients report improvements in stool-related aspects (pain and bleeding with bowel movements, anal skin irritation). Evidence-based preoperative patient counseling should include these findings.

Diversity in United States medical faculty relative to population trends, 2005–2019

Increasing diversity is essential not only for equal healthcare among all individuals but also for equal socio-economic potential for all genders and ethnicities. With changing demographics over the years, we tried to assess the impact of university programs for the promotion of equality in ethnic representation in the medical community. The US population, based on the data taken from the US Census Bureau, was compared to the Faculty Administrative Management Online User System (FAMOUS) data to analyze the representation of the medical community to the general US population. Females have reached near parity in their representation within the medical community faculty. Underrepresented in medicine individuals have not come far enough to reach parity in their representation within the medical community. As compared to the general US population, while Asians are overrepresented, Black and Hispanic proportions in the medical community are still underrepresented.

Oral fluoroquinolones and risk of aortic aneurysm or dissection: A nationwide population-based propensity score-matched cohort study.

To investigate risk of aortic aneurysm or dissection in patients using oral fluoroquinolones compared to those using macrolides in real-world clinical practice among a large US general population. Retrospective cohort study design. MarketScan commercial and Medicare supplemental databases. Adults patients with at least one prescription fill for fluoroquinolone or macrolide antibiotics. Fluoroquinolone or macrolide antibiotics. The primary outcome was estimated incidence of aortic aneurysm or dissection associated with the use of fluoroquinolones compared with macrolides during a 60-day follow-up period in a 1:1 propensity score-matched cohort. We identified 3,174,620 patients (1,587,310 in each group) after 1:1 propensity score matching. Crude incidence of aortic aneurysm or dissection was 1.9 cases per 1000 person-years among fluoroquinolone users and 1.2 cases per 1000 person-years among macrolide users. In multivariable Cox regression, compared with macrolides, the use of fluoroquinolones was associated with an increased risk of aortic aneurysm or dissection (aHR: 1.34; 95% CI: 1.17-1.54). The association was primarily driven by a high incidence of aortic aneurysm cases (95.8%). Results of sensitivity (e.g., fluoroquinolone exposure ranging from 7 to 14 days (aHR: 1.47; 95% CI: 1.26-1.71)) and subgroup analyses (e.g., ciprofloxacin (aHR: 1.26; 95% CI: 1.07-1.49) and levofloxacin (aHR: 1.44; 95% CI: 1.19-1.52)) remained consistent with main findings. Fluoroquinolone use was associated with a 34% increased risk of aortic aneurysm or dissection compared with macrolide use among a general US population.

Poster 383: Incidence of Sports Related Tendon Ruptures in the United States

Objectives: Physical activity is known to have multiple beneficial health effects, including a reduced risk of cardiovascular disease, improved insulin sensitivity and cognitive function [1,2]. Sports participation inherently increases the risk of musculoskeletal injury, including tendon rupture [3]. Tendon ruptures can be debilitating injuries and often require multidisciplinary treatment and long recovery periods and potentially lead to significant reductions in quality of life, lost productivity, and considerable healthcare costs [4]. Previous studies have been focused primarily on specific types of tendon injuries and/or specific patient populations such as high-level athletes and military trainees, which is not generalizable to the US population [5-8]. There currently exist no updated, population-based studies describing the incidence and demographics of all athletic/sports-related tendon ruptures in the general US population. The purpose of this study was to describe the contemporary epidemiology of athletic tendon ruptures in the US in the most recent two decades using a nationally representative sample. Methods: The NEISS database, a nationally representative sample of US hospital emergency departments was used to ascertain the incidence rates of various types of tendon ruptures in the Unites States. All cases from 2001-2020 were reviewed for case narratives to select only those cases with a clear diagnosis of an acute primary tendon rupture. After exclusions, a total of n=5,765 unweighted cases were identified, representing a national estimate of N=235,189 tendon ruptures (95% CI=186,833- 283,546). Finally, each case narrative was manually reviewed and cross-referenced with the case’s product codes to assign a primary injury mechanism to each patient record, and only those cases involving exercise-/sports-related injury mechanisms were included in the final analyses. Statistical analysis was performed using the survey data commands in Stata/IC, version 17.0 (StataCorp, College Station, TX, US), accounting for sample weights and the complex survey designs. The incidence rate (IR) of tendon ruptures and mechanism were calculated and chi-square tests were used to compare estimated IRs between groups. Student t-test/analysis of variance and design-adjusted Rao-Scott chi- square analysis was used for direct comparisons of means for continuous variables and proportions for categorical variables, respectively [9,10]. Temporal trends and annual percentage changes were assessed via regression analysis. Results: An estimated total of 141,382 individuals (95% CI=107,478-175,286) presented to US EDs with a sports-related tendon rupture over the study period for an overall incidence of 22.9 Person-Years at-risk (PYR) (95% CI=17.4-28.3). Mean age was 37.7 years (95% CI=37.0-38.5). Peak incidence of tendon ruptures occurred in the fourth decade and persons aged 20-40 years accounted for a majority of cases (78.2%). Achilles tendon rupture was the most common injury, representing over half of all cases (55.9%). Basketball was the most common sports-related injury mechanism, accounting for more than one-third of all injuries (36.6%) and a common mechanism for all tendon ruptures of the lower extremity. For sports-related injuries involving upper extremity tendons, weight lifting was the most common mechanism for most, including biceps, rotator cuff, and triceps/pectoralis tendon ruptures. Nearly half of all injuries occurred in contact sports (46.8%). The annual incidence of all sports-related tendon ruptures in the US increased significantly from 2001 to 2020 (AAPC=1.9, 95% CI=1.0-2.8; P&lt;0.01). For comparison, the annual incidence of all non-sports-related tendon ruptures also increased significantly over the same time period (AAPC=4.9, 95% CI=3.7-6.1; P&lt;0.01), and in fact increased at a significantly higher rate than that of all sports-related ruptures (P&lt;0.01). Complete national injury estimate data for each specific type of sport or recreational activity, overall and for each type of tendon rupture, is reported in the Supplement Tables (Supplement 5,6). Conclusions: Tendon ruptures can be debilitating injuries for all patients and can especially affect personal and team performance of competitive athletes to differing degrees depending on the athlete’s particular sport [11]. There is a paucity of population-based studies describing the incidence and demographics of all athletic/exercise-related tendon ruptures in the general US population. This study highlights an increasing annual incidence of athletic tendon ruptures over the last two decades in the US, primarily affecting males of many different age groups. The incidence of nearly all types of tendon ruptures was significantly higher in males when compared with females, which is generally consistent with previous studies involving other large patient populations [12-16]. Previous population-based studies demonstrating an increased incidence of tendon ruptures in recent years have attributed these trends in part to increased athletic participation among adults of various ages [16–18]. Our results show the same trends and are likely attributed to increased participation in athletics, as well as the growing popularity of unconventional sports. [Table: see text][Table: see text][Table: see text][Table: see text]

The prevalence of undiagnosed anxiety: A national survey

Generalized anxiety disorder (GAD) is a chronic condition characterized by excessive, unrealistic worry and anxiety about multiple events or activities and leads to significant impairment in daily functioning and quality of life. Effective treatments for GAD exist, but the first step is identification of the disorder. The current study aims to document the frequency of GAD symptoms amongst the general US population. A web-based survey was conducted to assess the frequency of daily anxiety symptoms amongst adults residing in the United States. Questions from the GAD-7 were used to be able to quantify the burden of diagnosed and undiagnosed generalized anxiety disorder. JMP 16.0 for Mac OS was used to perform statistical analyses. Institutional Board Review gave the study an exempt determination (#2022–569). The median GAD-7 score was 16 (IQR 12–19) with a range from to 7 to 28. GAD-7 scores stratified by diagnosed (median=14) vs. undiagnosed (median =18) demonstrated a significant difference (P<0.0001) with a robust goodness-of-fit coefficient (R2= 14.3%).Persons who were retired (p = 0.0262) or older (p = 0.0356) were significantly less likely to experience GAD symptoms. Conversely, sex, age, income and the use of depressants, stimulants or benzodiazepines were not significantly correlated with a GAD score of ≥15. The present findings are based on cross-sectional survey data. This study suggests that more than 50% experience symptoms concerning for GAD, without a formal diagnosis. The relevance of this research is it underscores the importance of mental health outreach, and removal of stigma surrounding mental health.

Poster 375: Incidence of Tendon Ruptures in the US: Comparison of Differences Across Racial Groups

Poster 375: Incidence of Tendon Ruptures in the US: Comparison of Differences Across Racial Groups

Poster 396: Barriers and facilitators to national licensure for US medical professionals: what Covid has taught us and using sports medicine as a launch pad

Objectives: GLOBAL AIM: Increase license portability across state lines for all US medical professionals. SPECIFIC AIM: Increase the ability to provide medical care nationwide for all US sports medicine physicians (who have a CAQ for their specialty) across state lines and set a precedent for other licensed healthcare professionals by 2026. The aim is to extend the portability of medical licensure across state lines to all sports medicine professionals (not just those who care for professional teams) and use this as a precedent eventually for all types of healthcare workers. Currently sports medicine physicians for professional teams are allowed to provide care across state lines which is legislated by “The Sports Medicine Licensure Clarity Act” (SMLCA) in 2018. As July 22, 2022, licensure is allowed for at least telemedicine across state lines for 23 states and has been extended by the HHS as part of Covid healthcare measures that were implemented in 2020. Methods: Review of current policies, barriers and facilitators has been performed using various search strategies and qualitative techniques. Current state and national laws were reviewed and will be presented. California has a large population where there is no reciprocity for other medical professionals, therefore meetings have been set with the Business Professions Committee with a plan to submit a bill sponsored by a state assemblyman to expand access to licensure across state lines in 2023. Results: One barrier is the loss of states’ autonomy as well as the individual authority and stature a medical professional may gain from being on a licensing board. Most US states have no reciprocity and not all have the licensure process standardized. Some states have a non-transparent process and others do not wish to participate in regional compacts such as California. Even more concerning, some states are found to more-likely censure doctors of color and perform sham peer review. This is an example of bias in medical credentialing that can impede diversity and inclusion efforts. The European Union allows medical licensure across national borders. Doctors need to pass a language proficiency test for the country they wish to practice in, regardless of which European country they received their medical training. Given that English is the only language of instruction in the US, proficiency can be easily evaluated. Language should not be a barrier to license portability, especially if one is already licensed in one US state even for foreign medical graduates. The Covid pandemic showed licensure is obtainable in a relatively rapid fashion across state lines. In addition, federal health care facilities such as the VA system already allow practitioners licensed in one state to practice in another without a license to that specific state. Portability across state-lines aids practitioners who practice on state borders in both rural and urban areas, such as the NH and VT border(rural), and NY and DC metro areas (urban) as well as telehealth for both an immobile and mobile populations, enhancing equitable healthcare access. This also removes financial barriers of cost for licensing fees for practitioners and staff resources to process licenses. Conclusions: The US has one of the most restrictive medical licensures of all developed countries, making mobilization of healthcare workers extremely difficult. Removing this barrier will be beneficial when medical staff is needed across state lines for pandemics, natural disasters, intake of refugees/immigrants, and global sporting events held in the US such as the World Cup in 2026, and Olympics in 2028. This could also extend access for the general US population to healthcare providers via “tele-medicine” (virtual/video visits), to essentially all populations (socio-economically disadvantaged, immigrants, those with mobility and transportation barriers, rural locations etc). This will ensure higher quality care, better follow-up along with more timely and equitable healthcare, which are all currently limited by restricting portability and requiring licenses for each individual state.

Causes of death among patients with cutaneous melanoma: a US population-based study

Research on mortality outcomes and non-cancer-related causes of death in patients with cutaneous melanoma (CM) remains limited. This study aimed to identify the prevalence of non-cancer-related deaths following CM diagnosis. The data of 224,624 patients diagnosed with malignant CM in the United States between 2000 and 2019 were extracted from the Surveillance, Epidemiology, and End Results (SEER) database. We stratified our cohort based on their melanoma stage at diagnosis and further calculated standardized mortality ratios (SMRs) for each cause of death, comparing their relative risk to that of the general US population. The total number of fatalities among melanoma patients was 60,110, representing 26.8% of the total cases. The percentage of deaths is directly proportional to the disease stage, reaching 80% in distant melanoma. The highest fatalities among the localized melanoma group (25,332; 60.5%) occurred from non-cancer causes, followed by melanoma-attributable deaths (10,817; 25.8%). Conversely, melanoma is the leading cause of death in regional and distant melanoma cohorts. Cardiovascular and cerebrovascular diseases were the most prevalent non-cancer causes of death among the three disease-stage cohorts. Compared to the general population, we did not observe an increased risk of death due to non-cancer causes in the localized CM cohort, while patients diagnosed with regional and distant CMs had a statistically significant higher risk of death from all the reported major causes of death.

Support for pictorial health warning labels on cigarette packages in the United States among adults who currently smoke or quit smoking: Findings from the ITC US Smoking and Vaping Surveys.

In March 2020, the US Food and Drug Administration (FDA) finalized new pictorial health warnings (PHWs), covering 50% of the front and back of the pack; however, legal challenges from cigarette manufacturers have prevented the new warnings from being implemented. About 70% of adults in the general US population support PHWs. This study assessed support for PHWs in 2016, 2018 and 2020 among US adults (aged ≥18 years) who currently smoke or formerly smoked cigarettes. We also assessed factors related to support. Respondents included adults who currently or formerly smoked cigarettes and participated in at least one wave of the US ITC Smoking and Vaping Surveys: Wave 1 (2016, n=2557); Wave 2 (2018, n=2685); and Wave 3 (2020, n=1112). We assessed changes in support for PHWs between 2016 and 2020, and assessed factors related to support (support vs oppose/don't know). Analyses were conducted on weighted data. Overall, 38.0% of respondents supported PHWs in 2016, with a significant increase to 44.7% in 2018 (p<0.001), and leveling off to 45.0% in 2020 (2018 vs 2020, p=0.91). Support was highest among former smokers and lowest among daily smokers in all three survey years. Support for PHWs at all survey years was significantly higher among those who formerly smoked, were younger (aged 18-39 vs ≥40 years), those who identified as Black (vs White), and planned to quit smoking (vs not planning to quit). There were no differences by income level, education level, or sex. Nearly half of US adults who smoke cigarettes or quit smoking supported PHWs in 2020, with support being higher among younger adults, ethnic minorities, and those who formerly smoked. Support increased between 2016 and 2018, but not between 2018 and 2020. Similar to other studies, fewer current and former smokers supported PHWs compared to the US adult general population.

Sleep Disturbance Among Adults With Overactive Bladder: A Cross-sectional Survey

To examine differences in sleep disturbance, nocturia, and depression among adults with overactive bladder (OAB) by treatment type. A cross-sectional survey of adults with OAB assessed sleep disturbance, nocturia, and depression using patient-reported outcome measures, including the Patient Reported Outcomes Measurement Information System (PROMIS®)-29 Profile v2.1 (Sleep Disturbance and Depression domains), Lower Urinary Tract Dysfunction Research Network Symptom Index-10, and PROMIS® Sleep Disturbance Short Form 8B. Treatment groups included antimuscarinics, β-3 adrenergic agonists, and no treatment. Analysis of covariance (ANCOVA) was used to test for differences in study endpoints; Bonferroni-adjusted pairwise tests (p<0.05/3) were performed to compare differences in least squares means between groups. One hundred participants were included per treatment group. The overall mean (standard deviation) age across all groups was 47.8 (11.8) years. Symptom scores across all PROMIS domains in all three treatment groups were higher than the US general population. There were no statistically significant differences in outcomes across treatment groups. Adults with OAB reported being affected by sleep disturbance and depression, regardless of treatment. The mirabegron group trended toward the lowest symptom impact across all outcomes, however comparisons were not significant. Future research should examine temporal associations between OAB treatment, sleep disturbance, and outcomes.

330-OR: Healthy Eating Index Correlates with Better Glycemic Control among People with Type 1 Diabetes

The amount and type of food consumed impacts glycemic response and insulin needs of people with type 1 diabetes (T1D). Day to day variation in types of foods consumed or diet quality may acutely impact glycemic levels and insulin needs within an individual with T1D. As part of the Type 1 Diabetes Exercise Initiative (T1Dexi), we examined the impact of overall daily diet quality on glycemic control. Diet quality was assessed by the Healthy Eating Index-2015 (HEI) where a score of 100 indicates highest quality diet characterized by intake of more vegetables, fruits, and whole grains and less intake of saturated fat and added sugar. Dietary intake was captured on up to 12 different days per participant during the one-month study via food photography with the T1Dexi app. Food photos were analyzed for nutrient intake by the Remote Food Photography Method. Mean HEI score for all participants was 57, similar to the general US population. Each day of dietary intake was classified as low (HEI≤57) or high (HEI&amp;gt;57) within a participant and only participants with at least two low and two high HEI days were included in the analysis. CGM and insulin metrics were compared using a linear mixed effect model with a random subject effect. Participants (n=223) were 19-68 years (37±14 years), 76% identified as female, had a mean HbA1C of 6.6±0.7 and a mean body mass index of 25.1±3.6. On high HEI days (mean score: 66±4), total time in range (70-180 mg/dl) was greater (77.2±14% vs 75.7±14% p=0.01), while time above 180 mg/dl (19±14% vs 21±15%, p=0.01) and mean glucose (143±22 vs 145±22 mg/dl, p=0.02) were lower compared to low HEI days (mean score: 47±5). Total daily insulin dose was lower on high HEI days (0.52±0.18 vs 0.54±0.18 U/kg/day p=0.01). Higher diet quality correlates with improved glycemia and lowered insulin needs during that 24-hour period of time within an individual T1D participant but the impact of diet quality was smaller than the impact of exercise and represents an incremental improvement among well-controlled subjects. Disclosure M.B.Gillingham: None. T1dexi study group: n/a. C.Marak: None. P.Calhoun: None. K.E.Neubig: None. S.R.Patton: None. J.R.Castle: Advisory Panel; Novo Nordisk, Zealand Pharma A/S, Research Support; Dexcom, Inc., Stock/Shareholder; Pacific Diabetes Technologies. P.G.Jacobs: Board Member; Pacific Diabetes Technologies, Other Relationship; Pacific Diabetes Technologies, Research Support; Dexcom, Inc. R.L.Gal: None. C.K.Martin: Board Member; EHE Health, Wondr Health, Other Relationship; ABGIL, Research Support; Pack Health, Evidation Health, Lilly, WW International, Inc. Funding The Leona M. and Harry B. Helmsley Charitable Trust; Verily Life Sciences; Dexcom, Inc.

1035-P: Area Deprivation Index and Rates of Specialty Care in Monogenic Diabetes Registry Participants

While diabetes is one of the most common chronic medical conditions, monogenic forms of diabetes represent a rare subtype, and face barriers to timely diagnosis similar to other rare diseases (RD), which are exacerbated by low health literacy (HL) and health care access barriers. The Monogenic Diabetes Registry (MDR) follows more than 1,200 participants with molecular diagnoses of monogenic diabetes who can offer insight into diagnostic barriers and facilitators. Aim: To assess area deprivation index (ADI- a measure of neighborhood disadvantage in the US) as a proxy of HL and health care provider type (specialist versus generalist) as a proxy of health care access in a subset of MDR participants with maturity-onset diabetes of the young (MODY). Methods: Cross-sectional analysis of REDCap data for 79 participants. ADI was constructed for each participant and descriptive statistics were analyzed with RStudio. Kruskal-Wallis was used for comparisons. Results: The median ADI of MDR participants was 26 (less than expected value of 50; p&amp;lt;0.001). Only 20% were from neighborhoods with &amp;gt;50th %ile deprivation. Sixty-two percent were under specialty care for diabetes. The median ADI for those under specialist care was lower than for those under generalist care (23 versus 36), but did not reach statistical significance. There was no difference in median ADI between participants receiving clinical versus research genetic testing or between those referred by providers versus self-referral. Discussion: ADI inversely correlates with HL and SES. MDR participants had ADI percentiles below the national median and a majority were under the care of diabetes specialists compared to ~15% of the general US population living with diabetes. These findings suggest inequity in who finds and enrolls in the Registry, and mimics the broader RD literature. Efforts are needed to better reach populations disproportionately affected by health disparities to ensure equity in monogenic diabetes diagnosis and management. Disclosure R.G.Son: None. R.N.Naylor: None. S.Uiversity of chicago monogenic diabetes registry : n/a. Funding National Institutes of Health (R01DK104942, P30DK020595, K23DK114564, UL1TR000430)

Risk of cerebrovascular disease after cancer diagnosis in the United States

The risk of subsequent cerebrovascular disease among cancer patients of multiple cancers in the US is not well understood. A total of 3,843,261 cancer patients diagnosed from 1975 to 2018, were included from the surveillance, epidemiology, and end results (SEER) database. Standardized mortality ratios (SMRs) and absolute excess risks (AERs) were estimated. The overall cerebrovascular disease SMR was 1.04 (95% CI, 1.03-1.04), and the AER per 10,000 person-years at risk was 0.89. When compared with the US general population, greater cerebrovascular disease risk was correlated with certain cancer sites,American Indian/Alaska Native race, Asian or Pacific Islander race, unmarried marital status, distant metastasis, younger age, and an earlier time of cancer diagnosis. Clinically, more precision and proactive strategies for cerebrovascular disease prevention are required to subgroup of cancer patients witha greater risk of cerebrovascular disease, especially within the first two months.

Associations of Cardiac Biomarkers With Peripheral Artery Disease and Peripheral Neuropathy in US Adults Without Prevalent Cardiovascular Disease.

NT-proBNP (N-terminal pro-B-type natriuretic peptide), high-sensitivity cardiac troponin T (hs-troponin T), and high-sensitivity cardiac troponin I (hs-troponin I) are increasingly being recommended for risk stratification for a variety of cardiovascular outcomes. The aims of our study were to establish the prevalence and associations of elevated NT-proBNP, hs-troponin T, and hs-troponin I with lower extremity disease, including peripheral artery disease (PAD) and peripheral neuropathy (PN), in the US general adult population without known cardiovascular disease. We also assessed whether the combination of PAD or PN and elevated cardiac biomarkers was associated with an increased risk of all-cause and cardiovascular mortality. We conducted a cross-sectional analysis of the associations of NT-proBNP, hs-troponin T, and hs-troponin I with PAD (based on ankle-brachial index <0.90) and PN (diagnosed by monofilament testing) in adult participants aged ≥40 years of age without prevalent cardiovascular disease in NHANES (National Health and Nutrition Examination Survey) 1999 to 2004. We calculated the prevalence of elevated cardiac biomarkers among adults with PAD and PN and used multivariable logistic regression to assess the associations of each cardiac biomarker, modeled using clinical cut points, with PAD and PN separately. We used multivariable Cox proportional hazards models to assess the adjusted associations of cross categories of clinical categories of each cardiac biomarker and PAD or PN with all-cause and cardiovascular mortality. In US adults aged ≥40 years, the prevalence (±SE) of PAD was 4.1±0.2% and the prevalence of PN was 12.0±0.5%. The prevalence of elevated NT-proBNP (≥125 ng/L), hs-troponin T (≥6 ng/L), and hs-troponin I (≥6 ng/L for men and ≥4 ng/L for women) was 54.0±3.4%, 73.9±3.5%, and 32.3±3.7%, respectively, among adults with PAD and 32.9±1.9%, 72.8±2.0%, and 22.7±1.9%, respectively, among adults with PN. There was a strong, graded association of higher clinical categories of NT-proBNP with PAD after adjusting for cardiovascular risk factors. Clinical categories of elevated hs-troponin T and hs-troponin I were strongly associated with PN in adjusted models. After a maximum follow-up of 21 years, elevated NT-proBNP, hs-troponin T, and hs-troponin I were each associated with all-cause and cardiovascular mortality, with higher risks of death observed among adults with elevated cardiac biomarkers plus PAD or PN compared with elevated biomarkers alone. Our study establishes a high burden of subclinical cardiovascular disease defined by cardiac biomarkers in people with PAD or PN. Cardiac biomarkers provided prognostic information for mortality within and across PAD and PN status, supporting the use of these biomarkers for risk stratification among adults without prevalent cardiovascular disease.

#5300 HUMANISTIC BURDEN OF RARE KIDNEY DISEASES: UNDERSTANDING THE IMPACT OF IGAN AND FSGS ON PATIENTS AND CARE-PARTNERS STUDY (HONUS): A US IGAN RESULTS UPDATE

Abstract Background and Aims While immunoglobulin A nephropathy (IgAN) has been shown to be associated with clinical and economic burden, the humanistic burden associated with IgAN is less understood. HONUS is a multi-national, cross-sectional survey study to evaluate the humanistic burden associated with rare kidney diseases, including IgAN, from the patient and caregiver perspectives in the US and Europe. Method The study recruited adult patients (≥18 years old) with their care-partners and parents/care-partners of youth (8-17 years old) with IgAN or focal segmental glomerulosclerosis (FSGS). Participants completed an online survey with questions on demographic and clinical characteristics, health-related quality of life (HRQoL) (ie, 12-Item Short Form Survey [SF-12]), anxiety and depression (ie, Generalized Anxiety Disorder Assessment [GAD-7], Patient Health Questionnaire [PHQ-9]), most burdensome symptoms, fear and uncertainty for the future, and disease impact on work productivity (ie, Work Productivity and Activity Impairment [WPAI]). The current analysis is based on information from adults with IgAN and their care-partners in the US before September 2022. Descriptive analyses were conducted, with continuous variables summarized using means, medians, and standard deviations (SD), and categorical variables summarized using frequency counts and percentages. Results A total of 96 pairs of adults with IgAN and their care-partners in the US were included in the analysis. The mean age of adult patients was 37.5 and the majority were Caucasian (86.5%) and female (53.1%). Median time since diagnosis was 5.6 years. More than half of patients (59.4%) were in chronic kidney disease stage 3 or 4, while 5.2% were in end-stage renal disease and had received a kidney transplant. Hypertension (31.3%), anemia (25.0%), and depression (18.8%) were the most common comorbidities. In terms of HRQoL, patient's mean (SD) SF-12 physical and mental component scores (PCS, MCS) were reported at 46.9 (7.4) and 41.1 (9.1), respectively, reflecting worse HRQoL (lower score) than previously published US general population scores (PCS and MCS of 50 [10]). Moderate and severe anxiety was reported by 28.1% and 1.0% of patients, respectively; moderate, moderately severe, and severe depression was reported by 51.0%, 2.1% and 1.0% of patients, respectively. The most burdensome symptoms reported by patients were constipation (82.3%), lower back pain (79.2%), and bone or joint pain (77.1%). Based on a 4-week recall period, 25.0% of adult patients reported being ‘very much bothered’ or ‘extremely bothered’ by bone or joint pain (22.9% for lower back pain, 10.4% for constipation). Most patients (96.9%) reported feeling fear and uncertainty for the future due to their disease, of which 52.1% reported the frequency of fear and uncertainty to be ‘often’. Among employed patients (72.9%), percent absenteeism was reported in 6.9%, presenteeism in 27.1%, overall work productivity loss in 31.4%, and activity impairment in 36.2% because of IgAN-related reasons. Most paired care-partners (87.5%) were partners of patients, with a mean age of 39.5 years. The mean SF-12 PCS and MCS of care-partners were 50.4 and 43.6, respectively. Moderate anxiety was reported in 13.5% of care-partners, with none reporting severe anxiety; moderate and moderately severe depression was reported in 35.4% and 5.2% of care-partners, respectively. Almost all care-partners (99.0%) reported feeling fear and uncertainty for the future due to the disease of their cared ones, of which 39.6% reported the frequency of this worry to be ‘often’. Among employed care-partners (93.8%), 9.8% reported absenteeism, 27.3% reported presenteeism, 33.2% reported overall work productivity loss, and 31.9% reported activity impairment due to IgAN-related reasons. Conclusion Patients with IgAN experience impaired HRQoL, depression, anxiety, and poor productivity, compared to previously reported US general population estimates. This also impacts the HRQoL, in terms of mental components, and productivity of care-partners. Both patients with IgAN and their care-partners also report widespread fear and uncertainty for the future.

Seroprevalence and clinical characteristics of SARS-CoV-2 infection in children with cystic fibrosis.

People with cystic fibrosis (PwCF) have chronic lung disease and may be at increased risk of coronavirus disease 2019 (COVID-19)-related morbidity and mortality. This study aimed to determine seroprevalence and clinical characteristics of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in children with cystic fibrosis (CF), and to assess antibody responses following SARS-CoV-2 infection or vaccination. Children and adolescents with CF followed at Seattle Children's Hospital were enrolled between July 20, 2020 and February 28, 2021. SARS-CoV-2 serostatus was determined on enrollment at 6 and 11 months (±2 months) for nucleocapsid and spike IgG. Participants completed intake and weekly surveys inquiring about SARS-CoV-2 exposures, viral/respiratory illnesses, and symptoms. Of 125 PwCF enrolled, 14 (11%) had positive SARS-CoV-2 antibodies consistent with recent or past infection. Seropositive participants were more likely to identify as Hispanic (29% vs. 8%, p = 0.04) and have pulmonary exacerbations requiring oral antibiotics in the year prior (71% vs. 41%, p = 0.04). Five seropositive individuals (35.7%) were asymptomatic, while six (42.9%) reported mild symptoms, primarily cough and nasal congestion. Antispike protein IgG levels were approximately 10-fold higher in participants following vaccination compared with participants who had natural infection alone (p < 0.0001) and resembled levels previously reported in the general population. A majority of PwCF have mild or no symptoms of SARS-CoV-2 making it difficult to distinguish from baseline respiratory symptoms. Hispanic PwCF may be disproportionately impacted, consistent with racial and ethnic COVID-19 disparities among the general US population. Vaccination in PwCF generated antibody responses similar to those previously reported in the general population.