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1.
Am J Med Genet C Semin Med Genet ; 193(2): 147-159, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36896471

RESUMEN

Pathogenic variants in COL1A1 and COL1A2 are involved in osteogenesis imperfecta (OI) and, rarely, Ehlers-Danlos syndrome (EDS) subtypes and OI-EDS overlap syndromes (OIEDS1 and OIEDS2, respectively). Here we describe a cohort of 34 individuals with likely pathogenic and pathogenic variants in COL1A1 and COL1A2, 15 of whom have potential OIEDS1 (n = 5) or OIEDS2 (n = 10). A predominant OI phenotype and COL1A1 frameshift variants are present in 4/5 cases with potential OIEDS1. On the other hand, 9/10 potential OIEDS2 cases have a predominant EDS phenotype, including four with an initial diagnosis of hypermobile EDS (hEDS). An additional case with a predominant EDS phenotype had a COL1A1 arginine-to-cysteine variant that was originally misclassified as a variant of uncertain significance despite this type of variant being associated with classical EDS with vascular fragility. Vascular/arterial fragility was observed in 4/15 individuals (including one individual with an original diagnosis of hEDS), which underscores the unique clinical surveillance and management needs in these patients. In comparison to previously described OIEDS1/2, we observed differentiating features that should be considered to refine currently proposed criteria for genetic testing in OIEDS, which will be beneficial for diagnosis and management. Additionally, these results highlight the importance of gene-specific knowledge for informed variant classification and point to a potential genetic resolution (COL1A2) for some cases of clinically diagnosed hEDS.


Asunto(s)
Síndrome de Ehlers-Danlos , Osteogénesis Imperfecta , Humanos , Cadena alfa 1 del Colágeno Tipo I , Mutación , Colágeno Tipo I/genética , Síndrome de Ehlers-Danlos/genética , Síndrome de Ehlers-Danlos/diagnóstico , Síndrome de Ehlers-Danlos/patología , Osteogénesis Imperfecta/diagnóstico , Osteogénesis Imperfecta/genética , Osteogénesis Imperfecta/patología , Fenotipo
2.
Telemed J E Health ; 29(2): 261-269, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-35687402

RESUMEN

Background: We present an innovative care model for telehealth by creating a video conference group telemedicine program for patients with chronic disease and discuss findings from a post-program survey that was instrumental in understanding the response to telemedicine in a group setting. Methods: All patients who attended the group telemedicine program had a diagnosis of Hypermobile Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder and were requested to complete survey responses at the close of the program. Surveys were completed anonymously and electronically by REDCap. Elements of the Press Ganey, Consumer Assessment of Healthcare Providers and Systems, and Utah Telehealth Network patient satisfaction surveys were modified to construct the survey. Results: A total of 102 patients completed the post-telehealth program survey between August 20, 2021, and February 11, 2022. Around 93.1% stated that they gained a better understanding of the chronic condition, 88.3% stated that the program gave them the tools to improve, and 76.5% indicated the program addressed their specific needs. Approximately 92.1% found it easy to interact with the program facilitator and 79.4% found it easy to interact with program members. Around 93.1% said they would recommend the program to others. Discussion: We created a group telemedicine program for a complex chronic medical condition. The foundation of knowledge provided by the telemedicine program allowed more time during face-to-face encounters for individual assessment of the patient, and increased access to care. Overall, the program has improved the treatment process by reducing treatment burden and empowering patients with self-management skills to help reach our fundamental treatment goal of improving quality of life.


Asunto(s)
Síndrome de Ehlers-Danlos , Telemedicina , Humanos , Estudios Retrospectivos , Calidad de Vida , Síndrome de Ehlers-Danlos/diagnóstico , Enfermedad Crónica
3.
J Relig Health ; 60(5): 3177-3192, 2021 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-34338954

RESUMEN

Approximately 80% of Americans identify as religious. As physicians caring for patients with COVID-19, we have seen both positive and negative effects of religious activity during the pandemic. Religious worship generally supports close social interaction, which provides many benefits, especially in mental health, but it can also contradict infection control measures. These forces do not necessarily have to be in opposition to each other. Herein, we present three case vignettes of religious patients who were infected with and recovered from COVID-19. We review the potential benefits and risks of religious activity in the current pandemic, as supported by the medical literature. Finally, we offer some thoughts on how to engage with patients so that the benefits of both religious activity and public health measures are optimized.


Asunto(s)
COVID-19 , Pandemias , Humanos , Salud Mental , Pandemias/prevención & control , Religión , SARS-CoV-2 , Estados Unidos
4.
Telemed J E Health ; 26(11): 1419-1423, 2020 11.
Artículo en Inglés | MEDLINE | ID: mdl-32516070

RESUMEN

The coronavirus disease 2019 (COVID-19) pandemic is taking a massive toll on health care systems globally. We developed the COVID-19 virtual clinic (CVC) in conjunction with drive through testing to cope with this situation. There are two arms of the CVC: (1) a screening arm and (2) positive patient arm. Screening is performed over the phone based on the Centers for Disease Control and Prevention screening guideline. Positive patients are followed at regular intervals by video appointments where concerns can be addressed by a provider while also tracking symptom progression. We enrolled 63 positive patients out of 1,153 screened for COVID-19 as of this writing. The CVC continues to address patients' concerns and symptoms in an effort to minimize emergency department and hospital patient volumes, as incidence increases. Drive through testing in conjunction with a virtual clinic allows us to provide high-quality care in an anxious time without consuming excessive personal protective equipment or unnecessarily exposing health care workers. This article could serve as a model to guide other practices to cope with this and future pandemics.


Asunto(s)
Instituciones de Atención Ambulatoria/organización & administración , COVID-19/diagnóstico , COVID-19/epidemiología , Telemedicina/organización & administración , COVID-19/terapia , Humanos , Pandemias , Calidad de la Atención de Salud , SARS-CoV-2
6.
Phlebology ; 39(3): 202-213, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38050791

RESUMEN

OBJECTIVES: Comorbidities associated with venous origin chronic pelvic pain (VO-CPP) were evaluated pre and post venous treatment to assess change. MATERIALS AND METHODS: 45 women with VO-CPP were treated with venous stenting and/or embolization. Four surveys assessed symptoms pre- and post-treatment: IPPS (chronic pelvic pain), PUF (interstitial cystitis), OHQ (dysautonomia), and modified ROME III (IBS). Prevalence of joint hypermobility was investigated. RESULTS: Ages were 18-65. Pretreatment, 64% and 49% of women were in the severe range for PUF and OHQ, respectively. 40% and 56% met criteria for IBS and Ehlers-Danlos syndrome/Hypermobility Spectrum Disorder (EDS/HSD), respectively. 17eceived an iliac stent, 5 pelvic embolization, and 23 both. Post-treatment, average scores improved: IPPS (by 55%), PUF (34%), and OHQ (49%). Rome III improved only slightly. CONCLUSION: Pelvic pain, interstitial cystitis, and dysautonomia were frequently found with VO-CPP and improved after venous treatment. EDS/HSD and IBS were common in these women.


Asunto(s)
Dolor Crónico , Cistitis Intersticial , Intolerancia Ortostática , Humanos , Femenino , Cistitis Intersticial/complicaciones , Cistitis Intersticial/diagnóstico , Cistitis Intersticial/epidemiología , Intolerancia Ortostática/complicaciones , Dolor Pélvico/complicaciones , Pelvis
7.
Orphanet J Rare Dis ; 19(1): 122, 2024 Mar 14.
Artículo en Inglés | MEDLINE | ID: mdl-38486236

RESUMEN

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.


Asunto(s)
Enfermedades del Tejido Conjuntivo , Síndrome de Ehlers-Danlos , Inestabilidad de la Articulación , Humanos , Síndrome de Ehlers-Danlos/diagnóstico , Inestabilidad de la Articulación/diagnóstico , Encuestas y Cuestionarios
8.
Laryngoscope ; 134(2): 773-778, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37597175

RESUMEN

OBJECTIVE: The aim was to study laryngological complaints in patients with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorders (HSD). METHODS: A total of 363 patients met inclusion for the study by completing questions related to voice, upper airway, and swallowing between July 7, 2020 and July 13, 2022. Demographic data, voice-related questions, and hypermobility diagnosis were analyzed retrospectively. From those, 289 patients were diagnosed with hEDS or HSD with 74 that did not meet the diagnostic criteria for either diagnosis serving as controls. RESULTS: There were no statistically significant differences between patients with hEDS and HSD regarding Voice Handicap Index (VHI-10) scores, voice, upper airway, or swallow complaints. However, more hEDS/HSD patients answered positively to the laryngeal dysfunction question versus controls (p = 0.031). 22.5% of hEDS/HSD patients (n = 65) reported hoarseness, of which 52.3% reported hoarseness >2 days/month. 33.9% (n = 98) with hEDS/HSD reported symptoms of dysphagia, and 27.0% (n = 78) reported laryngeal dysfunction symptoms. Controls demonstrated 20.3% prevalence of hoarseness, of which 46.7% reported hoarseness >2 days/month. 24.3% of controls had dysphagia and 14.9% laryngeal dysfunction symptoms. Of the 363 patients, VHI-10 scores >11 were more likely in patients reporting >2 days of hoarseness/month (p = 0.001) versus those with <2 days of hoarseness/month. There was an increased prevalence of voice, upper airway, and dysphagia symptoms in hEDS/HSD patients compared with previously reported prevalence data in the general population. CONCLUSION: A significant proportion of patients diagnosed with hypermobility due to hEDS or HSD were found to have voice, upper airway, and dysphagia symptoms. These rates are higher than those previously reported in the general population. LEVEL OF EVIDENCE: 3 Laryngoscope, 134:773-778, 2024.


Asunto(s)
Trastornos de Deglución , Síndrome de Ehlers-Danlos , Inestabilidad de la Articulación , Humanos , Prevalencia , Ronquera , Trastornos de Deglución/epidemiología , Trastornos de Deglución/etiología , Estudios Retrospectivos , Inestabilidad de la Articulación/epidemiología , Inestabilidad de la Articulación/diagnóstico , Síndrome de Ehlers-Danlos/complicaciones , Síndrome de Ehlers-Danlos/epidemiología , Síndrome de Ehlers-Danlos/diagnóstico
9.
Front Cardiovasc Med ; 11: 1332508, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38562189

RESUMEN

Background: Defective connective tissue structure may cause individuals with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorders (HSD) to develop cardiac defects. Methods: We conducted a retrospective chart review of adult patients treated in the EDS Clinic from November 1, 2019, to June 20, 2022 to identify those with cardiac defects. Echocardiogram data were collected using a data collection service. All EDS Clinic patients were evaluated by a single physician and diagnosed according to the 2017 EDS diagnostic criteria. Patient demographic, family and cardiac history were extracted from self-reported responses from a REDCap clinical intake questionnaire. Patients with at least 1 available echocardiogram (ECHO) were selected for the study (n = 568). Results: The prevalence of aortic root dilation in patients with hEDS was 2.7% and for HSD was 0.6%, with larger measurements for males than females and with age. Based on self-reported cardiac history that was verified from the medical record, patients with hEDS with bradycardia (p = 0.034) or brain aneurysm (p = 0.015) had a significantly larger average adult aortic root z-score. In contrast, patients with HSD that self-reported dysautonomia (p = 0.019) had a significantly larger average aortic root z-score. The prevalence of diagnosed mitral valve prolapse in patients with hEDS was 3.5% and HSD was 1.8%. Variants of uncertain significance were identified in 16 of 84 patients that received genetic testing based on family history. Conclusions: These data reveal a low prevalence of cardiac defects in a large cohort of well-characterized hEDS and HSD patients. Differences in cardiovascular issues were not observed between patients with hEDS vs. HSD; and our findings suggest that cardiac defects in patients with hEDS or HSD are similar to the general population.

10.
Res Sq ; 2023 Jul 14.
Artículo en Inglés | MEDLINE | ID: mdl-37503006

RESUMEN

Background: The Ehlers-Danlos Syndromes (EDS) are a set 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 the Chicagoland region. In order to explore and begin to address barriers to seeking out 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, that 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, HSD, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and generate revenue for medical facilities.

11.
J Investig Med ; 71(8): 896-906, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37485961

RESUMEN

Identifying risk factors for post-acute sequelae of COVID-19 (PASC) is important. We conducted a multicenter cross-sectional survey study to define and characterize risk factors for severe COVID-19 in adults (≥18 years) treated at our virtual COVID-19 clinic from March 1, 2020, through March 31, 2021. We assessed patient demographics, symptom types, and persistence, incidence of PASC, and COVID-19-caused hospitalizations. Surveyed patients were also asked to rate their perception of the severity of their acute COVID-19 symptoms. Continuous variables were summarized descriptively. Differences among groups categorized by acute COVID-19 symptom severity level (mild/very mild, moderate, and severe/very severe) were evaluated with the Kruskal-Wallis rank sum test for continuous measures and the Pearson χ2 test for categorical measures. A total of 3094 adults completed the survey. More respondents with severe/very severe acute COVID-19 symptoms reported having PASC than did those with mild/very mild and moderate acute symptoms. A significantly greater proportion of respondents with PASC were women (68.4% vs 56.7%, p < 0.001), had been hospitalized (12.2% vs 4.4%, p < 0.001), reported having negative psychological COVID-19-related repercussions (39.9% vs 15.3%, p < 0.001), and required more than 1 month to resume normal activities (38.8% vs 12.9%, p < 0.001) than did those without PASC. These findings may improve our understanding of PASC and provide a framework for early recognition of and intervention for patients at higher risk for PASC. Further research is needed to understand the predictors of persistent symptoms after acute SARS-CoV-2 infection and the risk of PASC.


Asunto(s)
COVID-19 , Adulto , Humanos , Femenino , Masculino , COVID-19/complicaciones , Estudios Transversales , Centros de Atención Terciaria , SARS-CoV-2 , Síndrome Post Agudo de COVID-19 , Progresión de la Enfermedad , Factores de Riesgo
12.
Front Med (Lausanne) ; 10: 1301944, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38288305

RESUMEN

Background: This retrospective study was designed to analyze the prevalence and impact of associated comorbidities on fibromyalgia (FM) outcomes (functionality, pain, depression levels) for patients who participated in an intensive multicomponent clinical program in a tertiary care center. Methods: Participants included a sample of 411 patients diagnosed with FM at a large tertiary medical center using the 2016 ACR criteria. Patients completed an intensive 2-day cognitive behavioral treatment (CBT) program, filled out the Fibromyalgia Impact Questionnaire Revised (FIQR), the Center for Epidemiologic Studies Depression Scale (CES-D), the Pain Catastrophizing Scale (PCS), and were followed for 6 months after treatment completion. T-tests were performed to analyze differences between the presence or absence of select comorbidities for the three outcomes at follow-up. Statistically significant comorbidities (p < 0.05) were used as predictors in multivariable logistic regression models. Results: The FM associated comorbidities in this cohort that had significant impact on the measured outcome domains after treatment program completed were Obesity (FIQR p = 0.024), Hypothyroidism (CES-D p = 0.023, PCS p = 0.035), Gastroesophageal reflux disease GERD (PCS p < 0.001), Osteoarthritis (CES-D p = 0.047). Interestingly, Headache, the most frequent FM associated comorbidity in this cohort (33.6%), did not have a significant impact on the outcome domains at follow-up. Obesity (18.2%) was the only FM associated comorbidity significantly impacting all three outcome domains at follow-up. Conclusion: The present study suggests that addressing obesity may significantly impact outcomes in FM patients.

13.
Front Med (Lausanne) ; 10: 1096180, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37181352

RESUMEN

Background: Joint pain is a common symptom in patients with hypermobile Ehlers-Danlos Syndrome (hEDS), hypermobility spectrum disorders (HSD) and fibromyalgia. The goal of this study was to determine whether symptoms and comorbidities overlap in patients diagnosed with hEDS/HSD and/or fibromyalgia. Methods: We retrospectively examined self-reported data from an EDS Clinic intake questionnaire in patients diagnosed with hEDS/HSD, fibromyalgia, or both vs. controls with an emphasis on joint issues. Results: From 733 patients seen at the EDS Clinic, 56.5% (n = 414) were diagnosed with hEDS/HSD and fibromyalgia (Fibro), 23.8% (n = 167) hEDS/HSD, 13.3% (n = 98) fibromyalgia, or 7.4% (n = 54) none of these diagnoses. More patients were diagnosed with HSD (76.6%) than hEDS (23.4%). Patients were primarily White (95%) and female (90%) with a median age in their 30s (controls 36.7 [18.0, 70.0], fibromyalgia 39.7 [18.0, 75.0], hEDS/HSD 35.0 [18.0, 71.0], hEDS/HSD&Fibro 31.0 [18.0, 63.0]). There was high overlap in all 40 symptoms/comorbidities that we examined in patients diagnosed with fibromyalgia only or hEDS/HSD&Fibro, regardless of whether they had hEDS or HSD. Patients that only had hEDS/HSD without fibromyalgia had far fewer symptoms/comorbidities than patients with hEDS/HSD&Fibro. The top self-reported issues in patients that only had fibromyalgia were joint pain, hand pain when writing or typing, brain fog, joint pain keeping from daily activities, allergy/atopy and headache. Five issues that significantly and uniquely characterized patients diagnosed with hEDS/HSD&Fibro were subluxations (dislocations in hEDS patients), joint issues like sprains, the need to stop sports due to injuries, poor wound healing, and migraine. Conclusion: The majority of patients seen at the EDS Clinic had a diagnosis of hEDS/HSD plus fibromyalgia that was associated with more severe disease. Our findings indicate that fibromyalgia should be routinely assessed in patients with hEDS/HSD and vis-a-versa to improve patient care.

14.
SN Compr Clin Med ; 4(1): 90, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35402784

RESUMEN

Coronavirus Disease 2019 (COVID-19) is caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Over 220 countries and territories have been affected by this virus, and the infection rate has continued to rise. As patients recover from the virus, many are experiencing lingering symptoms. Understanding the impact of demographics and comorbidities on symptom prevalence, manifestations, and severity is not only relevant during acute infection, it is critical to the clinical management of patients with post-acute sequelae of COVID-19, also known as PASC. Herein, we provide a comprehensive review on the most recent research related to PASC. Specifically, we focus on the description of the disorder itself, compared to acute COVID-19, and which types of patients are most affected by long-term sequelae. Further, we share recommendations for management of the most common complications of PASC.

15.
Am J Med Sci ; 363(4): 295-304, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-35016849

RESUMEN

BACKGROUND: The aim of the study was to assess, characterize, and describe the prevalence and predicting factors of patient-reported severe coronavirus disease 2019 (COVID-19) infection and post-acute sequelae of COVID-19 (PASC). METHODS: We prospectively surveyed patients who received care in our outpatient clinic for COVID-19 from March 13, 2020, through August 17, 2020, and then retrospectively reviewed their electronic health records. We collected data for age, sex, and persistence of symptoms and compared data for hospitalized and nonhospitalized patients. Continuous and categorical variables were summarized, including time from COVID-19 onset, time to resuming normal activities, and length of time away from work. RESULTS: Of those receiving the survey, 437 adult patients with different degrees of severity of COVID-19 illness responded: 77% were between 3 and 6 months from the onset of infection. In total, 34.9% had persistent symptoms, and 11.5% were hospitalized. The most common symptom was fatigue (75.9%), followed by poor sleep quality (60.3%), anosmia (56.8%), dysgeusia (55%), and dyspnea (54.6%). Predicting factors for PASC were female sex and a negative psychological impact of the disease. Age, hospitalization, persistent symptoms, psychological impact (e.g., anxiety and depression), and time missed from work were significantly associated with perception of having severe COVID-19 illness. Hospitalization was not significantly associated with PASC. CONCLUSIONS: Over one-third of patients in our study had PASC. Persistent symptoms correlated with severity of disease and were significantly more common for women, for patients who had psychological symptoms (depression and/or anxiety), and for patients reporting inability to resume normal activities.


Asunto(s)
COVID-19 , Adulto , COVID-19/complicaciones , COVID-19/epidemiología , Progresión de la Enfermedad , Femenino , Humanos , Percepción , Prevalencia , Estudios Retrospectivos , SARS-CoV-2
16.
J Prim Care Community Health ; 13: 21501319221120738, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36036260

RESUMEN

BACKGROUND: About 4 out of 10 fibromyalgia patients suffer from depression. The European Alliance of Associations for Rheumatology (EULAR) guidelines recommend using antidepressants to treat fibromyalgia. OBJECTIVE: To determine predictors of improved outcomes following a multicomponent treatment program. DESIGN: We designed this longitudinal treatment outcome study to evaluate the prevalence of depression symptoms in patients diagnosed with fibromyalgia at a tertiary care facility, and the impact of depression on functional outcomes after completing a multicomponent fibromyalgia treatment program. SETTING: Tertiary care center. PATIENTS: This study included 411 adult patients with fibromyalgia who completed a multicomponent treatment program for fibromyalgia. Expert physicians performed comprehensive evaluations following American College of Rheumatology (ACR) criteria to confirm fibromyalgia before referral to the program. INTERVENTION: An intensive outpatient multicomponent treatment program consisting of 16 hours of cognitive behavioral strategies served as the intervention. MEASUREMENTS: Functional status was assessed using the Fibromyalgia Impact Questionnaire Revised (FIQR). Depression was evaluated with the Center for Epidemiologic Study of Depression (CES-D) measure. Measures were administered prior to participation in the program and approximately 5 months following completion of the program. RESULTS: The cohort had a high prevalence of depressive symptoms (73.2% had depression at admission). Higher depression scores at baseline predicted poorer outcomes following multi-component treatment. Effectively treated depression resulted in improved functioning at follow-up. LIMITATIONS: Findings limited to tertiary care center cohort of fibromyalgia patients. Patients did not undergo a structured clinical diagnostic interview to diagnose depression. CONCLUSIONS: The current data links depression to poorer outcomes in patients with fibromyalgia. Depression is an important modifiable factor in the management of fibromyalgia. Guidelines should reflect the importance of assessing and effectively treating depression at the time of diagnosis of fibromyalgia, to improve functional outcomes. REGISTRATION: Specific registry and specific study registration number-Institutional Review Board-(IRB# 19-000495). FUNDING SOURCE: No funding.


Asunto(s)
Fibromialgia , Adulto , Depresión , Humanos , Pacientes Ambulatorios , Factores de Riesgo , Encuestas y Cuestionarios
17.
SN Compr Clin Med ; 4(1): 138, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35811641

RESUMEN

In a large academic medical center, patient requests from the community and internal referrals for evaluation of suspected hypermobility conditions were being denied consultation because services specific to this condition were not available. We identified this gap and developed a comprehensive evaluation for this unique patient population. The objective of this paper is to demonstrate a solution for improving outcomes in a neglected patient population by establishing an innovative outpatient clinic specifically tailored for patients with EDS. We describe the lessons learned on establishing a specialty clinic for treating patients with hypermobility syndromes including hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobile syndrome disorder (HSD). Findings were collected from a patient focus group that was instrumental in understanding common care gaps. We document the firsthand perspective of three patients presenting with hypermobility accompanied by joint pain and denote the complicated state of healthcare in recognizing and treating this condition. A summary of patient demographics and characteristics was collected from patients seen in the clinic from November 14, 2019 to April 13, 2021. The firsthand accounts illustrate the challenges faced in treating this condition and the need for, and success of, this clinic using a coordinated care model. Demographics reveal a primarily white female population under the age of 50 with many comorbidities. Genetic testing was largely negative, with more patients diagnosed with HSD than hEDS. Our shared experience of launching a successful EDS clinic may assist other clinicians in establishing similar care models.

18.
Cureus ; 13(10): e18851, 2021 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-34804705

RESUMEN

BACKGROUND: Our goal was to assess the demographics, risk factors, and hospital admission and length of stay (LOS) among patients with acute COVID-19 and to identify whether age, smoking status, race, risk factors, and sex significantly affect the severity of illness according to hospitalization or admission to the intensive care unit (ICU). Severity was defined as admission to the hospital or ICU. METHODS: This retrospective cohort chart review included patients who received care from March 13 to August 17, 2020, at a single academic medical center. Age, COVID-19 risk factors, sex, race, smoking history, and hospital LOS were analyzed with hospital admission and ICU admission. Categorical variables were summarized. RESULTS: The chart review assessed 1,697 adult patients with various degrees of severity of COVID-19 illness: 23 patients had been admitted to the hospital, and 7 had been admitted to the ICU. Older age and more COVID-19 risk factors, as defined by the Centers for Disease Control and Prevention, were significantly associated with hospital admissions, and longer LOS was statistically associated with ICU admission. CONCLUSIONS: Severe COVID-19 infection was associated with older age and more risk factors. Current smoking status, sex, and race were not significantly different between hospitalized patients with severe COVID-19 infection who were admitted to the ICU and those who were not admitted to the ICU.

19.
SN Compr Clin Med ; 3(1): 247-254, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33469566

RESUMEN

Because most cases of coronavirus disease 2019 (COVID-19) are not severe, understanding the epidemiology of mild cases has important clinical implications. We aimed to describe the symptom profile and associated outcomes in a virtual outpatient COVID-19 clinic. We conducted a prospective cohort study from March through June 2020. We included 106 patients with positive results for SARS-CoV-2, followed up until they had 2 sequential negative tests. Exploratory regression analyses identified potential prognostic symptoms or risk factors associated with outcomes, including emergency department (ED) visits, hospitalizations, and time to resolution of viral shedding. The mean (range) patient age was 51 (18-86) years, 50% were men, and 36.5% had at least 1 risk factor, most commonly asthma (16%) and diabetes (10%). Most patients (98.1%) had symptoms-cough (80.4%), fatigue (67.6%), fever (66.0%), headache (49.0%), and ageusia (46.9%). Nine (8.5%) patients were admitted to the ED, 5 (4.7%) were hospitalized, and none died. Asthma (RR = 7.13, P = .001) and being immunocompromised (RR = 3.44, P = .03) were associated with higher risks of adverse outcomes. Asthma (HR = 0.56, P = .04) and early symptoms of ageusia (HR= 0.50, P = .01) or myalgia (HR = 0.63, P = .04) were associated with significantly longer duration of viral shedding. In contrast to reports about severe cases of COVID-19, we found a higher incidence of sinus symptoms, gastrointestinal symptoms, and myalgia and a lower incidence of fever, anosmia, and ageusia among our mild/moderate cases. Asthma and immunocompromised status were associated with adverse outcomes, and asthma and early symptoms of ageusia or myalgia with significantly longer duration of viral shedding.

20.
Mayo Clin Proc Innov Qual Outcomes ; 5(4): 771-782, 2021 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-34226884

RESUMEN

OBJECTIVE: To evaluate physician perceptions and attitudes toward telemedicine use at a tertiary care academic institution in northeast Florida during the coronavirus disease 2019 pandemic. PATIENTS AND METHODS: An anonymous 38-question cross-sectional survey was developed using Qualtrics survey software (Qualtrics) and e-mailed to all staff physicians from all specialty disciplines at Mayo Clinic in Florida. The survey was open from August 17, 2020, through September 1, 2020. Collected data included general demographic characteristics and employment information, attitude and experience with telemedicine use before and during the coronavirus disease 2019 pandemic, perception of patients' experience, and the effect of telemedicine on burnout. RESULTS: The survey was distributed to 529 eligible physicians at our institution, with 103 physicians responding (20%). The distribution of specialties was 22% primary care specialties, 41% other internal medicine subspecialties, and 18% surgical specialties. Collectively, 63% found comparable quality of care when provided virtually (vs in-person) whereas 80% perceived telemedicine as cost-effective. A total of 76% of physicians felt that telemedicine increased flexibility and control over patient care activities, with 36% reporting improved work-life balance and 30% reporting improved burnout symptoms. Overall, 42% preferred using telemedicine over in-person visits when possible. CONCLUSION: Physicians generally had positive attitudes regarding the adoption of telemedicine and perceived that the quality of health care delivery as generally comparable to in-person care. Future studies are needed to explore attitudes regarding telemedicine after the pandemic and how this virtual technology may be further used to improve physicians' professional and personal well-being.

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