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Item The Future of the Multidisciplinary Clinic(Hindawi Publishing Corporation, 2007-11-12) Brei, Timothy J.; Pediatrics, School of MedicineThe multidisciplinary clinic is the accepted model for health care delivery related to spina bifida. This article focuses on the factors affecting multidisciplinary care delivery and future challenges for multidisciplinary programs.Item 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 MedicineBackground: 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.Item Severe asthma in children: Description of a large multidisciplinary clinical cohort(Wiley, 2022) Forero Molina, Maria; Okoniewski, William; Puranik, Sandeep; Aujla, Shean; Celedón, Juan C.; Larkin, Allyson; Forno, Erick; Pediatrics, School of MedicineBackground: Children with severe asthma have substantial morbidity and healthcare utilization. Pediatric severe asthma is a heterogeneous disease, and a multidisciplinary approach can improve the diagnosis and management of these children. Methods: We reviewed the electronic health records for patients seen in the Severe Asthma Clinic (SAC) at UPMC Children's Hospital of Pittsburgh between August 2012 and October 2019. Results: Of the 110 patients in whom we extracted data, 46% were female, 48% were Black/African American, and 41% had ≥1 admission to the pediatric intensive care unit (PICU) for asthma. Compared to patients without a PICU admission, those with ≥1 PICU admission were more likely to be non-White (64.4% vs. 41.5%, p = 0.031) and more atopic (eosinophil count geometric mean = 673 vs. 319 cells/mm3 , p = 0.002; total IgE geometric mean = 754 vs. 303 KU/L, p = 0.003), and to have lower pre-bronchodilator FEV1 (58.6% [±18.1%] vs. 69.9% [±18.7%], p = 0.002) and elevated FeNO (60% vs. 22%, p = 0.02). In this cohort, 84% of patients were prescribed high-dose ICS/LABA and 36% were on biologics. Following enrollment in the SAC, severe exacerbations decreased from 3.2/year to 2.2/year (p < 0.0001); compared to the year before joining the SAC, in the following year the group had 106 fewer severe exacerbations. Conclusions: This large cohort of children with severe asthma had a high level of morbidity and healthcare utilization. Patients with a history of PICU admissions for asthma were more likely to be nonwhite and highly atopic, and to have lower lung function. Our data support a positive impact of a multidisciplinary clinic on patients with severe childhood asthma.Item Survivors of Congenital Diaphragmatic Hernia Repair Face Barriers to Long-Term Follow-Up Care(Elsevier, 2021-11) Tragesser, Cody J.; Hafezi, Niloufar; Kitsis, Michelle; Markel, Troy A.; Gray, Brian W.; Surgery, School of MedicineBACKGROUND: Congenital diaphragmatic hernia (CDH) carries high morbidity and mortality, and survivors commonly have neurodevelopmental, gastrointestinal, and pulmonary sequela requiring multidisciplinary care well beyond repair. We predict that following hospitalization for repair, CDH survivors face many barriers to receiving future medical care. METHODS: A retrospective review was conducted of all living CDH patients between ages 0 to 12 years who underwent repair at Riley Hospital for Children (RHC) from 2010 through 2019. Follow-up status with specialty providers was reviewed, and all eligible families were contacted to complete a survey regarding various aspects of their child's care, including functional status, quality of life, and barriers to care. Bivariate analysis was applied to patient data (P < 0.05 was significant) and survey responses were analyzed qualitatively. RESULTS: After exclusions, 70 survivors were contacted. Thirty-three (47%) were deemed lost to follow up to specialist providers, and were similar to those who maintained follow-up with respect to defect severity type (A-D, P = 0.57), ECMO use (P = 0.35), number of affected organ systems (P = 0.36), and number of providers following after discharge (P = 0.33). Seventeen (24%) families completed the survey, of whom eight (47%) were deemed lost to follow up to specialist providers. Families reported distance and time constraints, access to CDH-specific information and care, access to CDH-specific resources, and access to healthcare as significant barriers to care. All respondents were interested in a multidisciplinary CDH clinic. CONCLUSIONS: CDH survivors require multidisciplinary care beyond initial repair, but attrition to follow-up after discharge is high. A multidisciplinary CDH clinic may address caregivers' perceived barriers.Item Three-Year Experience of a Multidisciplinary Central Nervous System Clinic Model for Radiation Oncology and Neurosurgery (RADIANS) in a Community Hospital Setting(Auctores, 2021) Paez, Wencesley; Gheewala, Rohi; McClelland, Shearwood, III.; Jaboin, Jerry J.; Thomas, Charles R., Jr.; Lucke-Wold, Brandon; Ciporen, Jeremy N.; Mitin, Timur; Radiation Oncology, School of MedicineBackground: As academic centers partner and establish healthcare systems with community hospitals, delivery of subspecialty, multidisciplinary care in community hospital settings remains a challenge. Improving outcomes for central nervous system (CNS) disease is related to integrated care between neurosurgery (NS) and radiation oncology (RadOnc) specialties. Our multidisciplinary community hospital-based clinic, RADIANS, previously reported high patient approval of simultaneous evaluation with NS and RadOnc physicians. Three-year experience is now reported. Methods: Prospectively collected clinical and demographic patient data over three years was done, and surveys administered. Descriptive statistics reported as mean and percentages for patient characteristics, diagnosis, treatment and outcomes. Results: Between August 2016 and August 2019, 101 patients were evaluated. Mean age and distanced traveled was 61.2 years, and 54.9 miles, respectively. Patient Satisfaction Score was 4.79 (0-5 Scale, 5-very satisfied). Most common referral source was medical oncologists. Seventy-two patients had malignant CNS disease (brain mets 28; spine mets 27; both 6; primary brain 9; primary spine 2), 29 had benign CNS disease. Post-evaluation treatment: radiation therapy (RT) only (n=29), neurosurgery (NS) only (n=16), both RT and NS (n=22), and no RT/NS intervention (n=34). Fractionated stereotactic radiosurgery was most common RT delivered; craniotomy with tumor resection was most common NS performed. Treatment outcomes: local control=61/67 (91%); radiation necrosis or radiation-induced myelitis=2/51 (3.9%). Conclusions: The RADIANS multidisciplinary community hospital-based CNS clinic model is first of its kind to be reported, continuing strong patient approval at extended follow-up. Data indicates the model serves as a regional referral center, delivering evidence-based treatment modalities for complex CNS disease in community hospital settings, yielding high rates of local control and low rates of grade 3 or 4 radiation-induced toxicity.