Browsing by Author "Knight, Dacre R. T."

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    Estimates of the excess cost burden of Ehlers-Danlos syndromes: a United States MarketScan® claims database analysis
    (Frontiers Media, 2024-07-03) Schubart, Jane R.; Schaefer, Eric W.; Knight, Dacre R. T.; Mills, Susan E.; Francomano, Clair A.; Medical and Molecular Genetics, School of Medicine
    Introduction: Patients with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) have significant health challenges that are well-documented, however their impact in terms of cost is not known. Our research objective was to examine the cost burden of EDS and HSD in the United States. We focused this analysis on those with commercial insurance plans. Methods: We queried the MarketScan® database for year 2021 for claims that contained an ICD-10 diagnosis code for EDS or hypermobility. Excess costs for patients in the EDS and HSD cohorts were determined by matching each patient to one patient in the database that did not have a claim for EDS or HSD and comparing total costs for the calendar year. We determined whether patients had claims for selected comorbid conditions likely to impact costs during the calendar year. Results: Sample sizes were 5,113 for adult (age ≥ 18) patients with EDS, 4,880 for adult patients with HSD, 1,059 for child (age 5-17) patients with EDS, and 2,427 for child patients with HSD. The mean excess costs were $21,100 for adult EDS patients, $11,600 for adult HSD patients, $17,000 for child EDS patients, and $11,000 for child HSD patients. EDS and HSD cohorts, both adults and children, with any of the comorbidities had greater healthcare costs. The largest difference was found in the EDS cohort with gastrointestinal comorbid conditions, with more than double the costs for adults. Discussion: We found that patients in the MarketScan database, adults and children, who had EDS or HSD had substantially higher associated excess healthcare costs than patients without EDS or HSD when considering age, sex, geographic location, and comorbidities. These disproportionate healthcare costs in this population have health policy and economic implications, including the need for rapid diagnosis, access to treatment, and accelerated research to advance treatments.
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    Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region
    (Springer Nature, 2024-03-14) Wagner, Wendy; Doyle, Tom A.; Francomano, Clair A.; Knight, Dacre R. T.; Halverson, Colin M. E.; Medical and Molecular Genetics, School of Medicine
    Background: The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs. In order to explore and begin to address barriers to seeking appropriate care facing EDS patients in this region, we developed an online survey which we circulated through EDS social media groups for Chicagoland patients. Results: Three hundred and nine unique respondents participated. We found that there exists a strong medical need for and interest in the development of a center in the region, and participants reported that, if made available to them, they would make extensive and regular use of such a facility. Conclusions: We conclude that the establishment of a collaborative medical center specializing in the diagnosis and treatment of EDS, Hypermobility Spectrum Disorder, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and contribute to the sustainability of medical facilities.
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    The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022
    (Elsevier, 2024-12-14) Schubart, Jane R.; Schaefer, Eric W.; Mills, Susan E.; Knight, Dacre R. T.; Shen, Chan; Francomano, Clair A.; Medical and Molecular Genetics, School of Medicine
    Objective: To determine the financial impact of Ehlers-Danlos syndromes (EDS) on patients in the United States by examining the medical expenses incurred by patients. Patients and methods: We used a convenience sample approach and disseminated a self-reported survey questionnaire to individuals with EDS via patient advocacy organizations and support groups across the country, social media, and health professionals from April 1, 2023, to December 31, 2023. The survey focused on the out-of-pocket medical expenses incurred by patients. Results: The final analytic data set included 884 responses. Responses were received from individuals in all 50 states and the District of Columbia. More than 50% reported individual income less than $25,000, and more than 30% reported household income less than $50,000. More than 80% of respondents had some type of commercial insurance and 29% reported receiving Medicaid. Respondents received more financial assistance from their family and friends than from government sources. The total median out-of-pocket financial cost by our analysis was $13,450 (IQR: $6500-$25,800). Of the 838 who responded to the question, "Did the affected person receive the health care they needed?", 19% answered "no", 51% answered "yes, sometimes", and 30% answered "yes, most of the time". Conclusion: The factors contributing to financial impact include both direct and indirect costs of accessing and receiving medical care. Our study findings highlight the magnitude of the burden of health care spending on patients with EDS.