Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey.

Timely diagnosis is one of the most serious challenges faced by people living with a rare disease (PLWRD), and this study estimates that in Europe, the average total diagnosis time (TDT) is close to 5 years. We investigated the duration of the TDT for PLWRD in Europe, the difficulties associated with their diagnosis odyssey and the main determinants of diagnosis delays for all rare diseases (RD). We conducted a survey of PLWRD and their families using Rare Barometer, the survey initiative of EURORDIS-Rare Diseases Europe. In geographical Europe, we surveyed 6507 people living with 1675 RD in 41 countries. We then performed a descriptive analysis and ordinal logistic regressions to identify the main determinants of diagnosis delays. Average TDT is 4.7 years. 56% of respondents were diagnosed more than 6 months after a first medical contact. The main determinants of diagnosis delays are symptom onset before 30 years of age, especially during childhood (OR = 3.11; 95% CI: 2.4-4.0) and adolescence (OR = 4.79; 95% CI: 3.7-6.2), being a woman (OR = 1.22; 95% CI:1.1-1.4), living in Northern Europe (OR = 2.15; 95% CI:1.8-2.6) or Western Europe (OR = 1.96; 95% CI:1.6-2.3), the number of healthcare professionals consulted (OR = 5.15; 95% CI:4.1-6.4), misdiagnosis (OR = 2.48; 95% CI:2.1-2.9), referral to a centre of expertise (OR = 1.17; 95% CI:1.0-1.3), unmet needs for psychological support (OR = 1.34; 95% CI:1.2-1.5) and financial support (OR = 1.16; 95% CI:1.0-1.3), having a genetic disease (OR = 1.33; 95% CI:1.1-1.5) and a family history of an RD (OR = 1.36; 95% CI:1.1-1.6). These determinants can inform policies and actions to improve access to diagnosis for all PLWRD.

Impact of COVID-19 on Public Transit Accessibility and Ridership.

COVID-19 has radically transformed urban travel behavior throughout the world. Agencies have had to provide adequate service while navigating a rapidly changing environment with reduced revenue. As COVID-19-related restrictions are lifted, transit agencies are concerned about their ability to adapt to changes in ridership behavior and public transit usage. To aid their becoming more adaptive to sudden or persistent shifts in ridership, we addressed three questions: To what degree has COVID-19 affected fixed-line public transit ridership and what is the relationship between reduced demand and -vehicle trips? How has COVID-19 changed ridership patterns and are they expected to persist after restrictions are lifted? Are there disparities in ridership changes across socioeconomic groups and mobility-impaired riders? Focusing on Nashville and Chattanooga, TN, ridership demand and vehicle trips were compared with anonymized mobile location data to study the relationship between mobility patterns and transit usage. Correlation analysis and multiple linear regression were used to investigate the relationship between socioeconomic indicators and changes in transit ridership, and an analysis of changes in paratransit demand before and during COVID-19. Ridership initially dropped by 66% and 65% over the first month of the pandemic for Nashville and Chattanooga, respectively. Cellular mobility patterns in Chattanooga indicated that foot traffic recovered to a greater degree than transit ridership between mid-April and the last week in June, 2020. Education-level had a statistically significant impact on changes in fixed-line bus transit, and the distribution of changes in demand for paratransit services were similar to those of fixed-line bus transit.

Seat and seatbelt accommodation in fire apparatus: Anthropometric aspects.

This study developed anthropometric information on U.S. firefighters to guide fire-apparatus seat and seatbelt designs and future standards development. A stratified sample of 863 male and 88 female firefighters across the U.S. participated in the study. The study results suggested 498 mm in width, 404 mm in depth, and 365-476 mm in height for seat pans; 429-522 mm in width and 542 mm in height for seat back; 871 mm in height for head support; a seat space of 733 mm at shoulder and 678 mm at hip; and a knee/leg clearance of 909 mm in fire truck cab. Also, 1520 mm of lap belt web effective length and 2828 mm of lap-and-shoulder belt web effective length were suggested. These data for fire-truck seats and seatbelts provide a foundation for fire apparatus manufacturers and standards committees to improve firefighter seat designs and seatbelt usage compliance.

Sizing firefighters: method and implications.

OBJECTIVE: This article reports new anthropometric information of U.S. firefighters for fire apparatus design applications (Study 1) and presents a data method to assist in firefighter anthropometric data usage for research-to-practice propositions (Study 2). BACKGROUND: Up-to-date anthropometric information of the U.S. firefighter population is needed for updating ergonomic and safety specifications for fire apparatus. METHOD: A stratified sampling plan of three-age by three-race/ethnicity combinations was used to collect anthropometric data of 863 male and 88 female firefighters across the U.S. regions; 71 anthropometric dimensions were measured (Study I). Differences among original, weighted, and normality transformed data from Study 1 were compared to allowable observer errors (Study 2). RESULTS: On average, male firefighters were 9.8 kg heavier and female firefighters were 29 mm taller than their counterparts in the general U.S. population. They also have larger upper-body builds than those of the general U.S. population. The data in weighted, unweighted, and normality transformed modes were compatible among each other with a few exceptions. CONCLUSION: The data obtained in this study provide the first available U.S. national firefighter anthropometric information for fire apparatus designs. The data represent the demographic characteristics of the current firefighter population and, except for a few dimensions, can be directly employed into fire apparatus design applications without major weighting or nonnormality concerns. APPLICATION: The up-to-date firefighter anthropometric data and data method will benefit the design of future fire apparatus and protective equipment, such as seats, body restraints, cabs, gloves, and bunker gear.