Resource utilization and multidisciplinary care needs for patients with Ehlers–Danlos syndrome

Jones, Jordan T.; Black, William R.; Cogan, Wendy; Callen, Elisabeth

doi:10.1002/mgg3.2057

Cited by 11 publications

(9 citation statements)

References 26 publications

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“…30 Additionally, there are multiple reports of how to development a multidisciplinary clinic and provide care for patients with EDS 31,32 ; however, these options are not available in all areas, which may lead to diagnostic and management delays. Patients and families with EDS do report a willingness to travel to obtain subspecialty or EDS-specific care, 24 but this comes at a significant time and cost-burden to families and is not a sustainable solution to improve consistent and available care and management of patients with EDS. Clear guidance needs to be established on co-management of patients and symptoms, and consultation with subspecialists that can be applied to any community regardless of resources available.…”

Section: Discussionmentioning

confidence: 99%

Barriers to the Diagnosis, Care, and Management of Pediatric Patients With Ehlers-Danlos Syndrome in the United States: A Qualitative Analysis

Black,

Jones

2023

Global Pediatric Health

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Objectives: Ehlers-Danlos Syndromes (EDS) are a family of heritable connective tissue diseases. Primary practitioners are capable of diagnosing and managing EDS; however, few are knowledgeable and comfortable enough to see patients with EDS, resulting in delays in diagnosis and care. This study explores the barriers physicians experience with diagnosing, managing, and caring for patients with EDS, and potential resolutions to those barriers. Methods: As part of a larger online study, providers (n = 107) in the United States were asked to specify “What information would improve (their) comfort” in diagnosing, caring for, and managing EDS via open-ended questions. Results: Providers reported wanting clinical practice guidelines, in formats that were easily accessible and usable, information on their roles in the management of EDS, the best ways to coordinate with specialty care, and available specialty consultation. Conclusions: Providers overall are willing to diagnose and treat EDS; however, additional supports and training are needed.

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Section: Discussionmentioning

confidence: 99%

Barriers to the Diagnosis, Care, and Management of Pediatric Patients With Ehlers-Danlos Syndrome in the United States: A Qualitative Analysis

Black,

Jones

2023

Global Pediatric Health

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“…There were also many other visits across several other specialties, which can be common as healthcare utilization is high for patients with EDS. 5 Of the subspecialty care, 18% were seen in the endocrine gender specialty clinic, which provides GAMC. Subspecialty care and multidisciplinary care teams 28 are integral to the diagnosis and care of patients with EDS and are well positioned to be a referral source for gender-affirming care clinics, to help connect patients with needed clinical care.…”

Section: Discussionmentioning

confidence: 99%

“…Due to the complex needs and multisystem involvement, children and adolescents with EDS often seek care from multiple health-care providers. 4 , 5 Multidisciplinary care is recommended for the treatment of EDS to improve coordination of care, reduce medical visits, and improve outcomes. 6 However, the development of a multidisciplinary care team is predicated on identifying the healthcare needs expressed by patients to inform which specialties are needed for inclusion in these clinics.…”

Section: Introductionmentioning

confidence: 99%

Gender dysphoria in adolescents with Ehlers–Danlos syndrome

et al. 2022

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Objectives: Ehlers–Danlos Syndrome represents a family of heritable connective tissue disorders that include joint hypermobility, tissue fragility, and skin hyperextensibility. Ehlers–Danlos Syndrome presents with clinical sequela across multiple body systems that require multidisciplinary care. Little is known about adolescents with Ehlers–Danlos Syndrome who are transgender and gender diverse. To date, there have been no reports of transgender and gender diverse youth in pediatric patients with Ehlers–Danlos Syndrome. The objective of this study was to characterize transgender and gender diverse adolescents with Ehlers–Danlos Syndrome seen in a pediatric multidisciplinary specialty clinic. Methods: A retrospective chart review was performed and it was found that 28 patients were seen in the Ehlers–Danlos Syndrome multidisciplinary clinic were reported being transgender and gender diverse. Chart review included analysis of all documents in the electronic medical record, including demographic data, gender identity, chosen pronouns, specialty care previously received for Ehlers–Danlos Syndrome, symptoms and conditions related to it, and medications. Results: Of the 166 total adolescents seen in the pediatric multidisciplinary Ehlers–Danlos Syndrome clinic during the study period, 17% reported gender dysphoria. The average age at Ehlers–Danlos Syndrome diagnosis was 13.5 years (range 8–17 years). Most (61%) reported their gender identity as transgender, followed by nonbinary (14%). Most had preferred male (he/him) pronouns (47%), followed by nonbinary (they/them) pronouns (39%). The vast majority reported fatigue (75%), musculoskeletal issues (96%), psychiatric issues (86%), cardiac issues (71%), gastrointestinal issues (68%), and neurologic issues (79%). Conclusions: Here we report the first cohort of transgender and gender diverse adolescents in the Ehlers–Danlos syndrome population and show an association between the two. This report increases awareness for providers who care for patients with Ehlers–Danlos Syndrome. As care for those with Ehlers–Danlos Syndrome is often complex and multidisciplinary, providers should adopt practices of gender-affirming medical care that contribute to improved care and outcomes.

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“…With each symptom more specialty referrals are added, which leads to a need for coordinated multidisciplinary care from EDS knowledgeable providers. 6 …”

Section: Introductionmentioning

confidence: 99%

Development of a Multidisciplinary Clinic for Patients with Ehlers Danlos Syndromes: Considerations and Strategies

Black¹,

Jones²,

Rush³

et al. 2023

JMDH

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Ehlers-Danlos Syndromes (EDS) is a group of connective tissue disorders often encountered within rheumatology clinics and is associated with several overlapping symptoms, which may require attention from other medical subspecialities. Barriers exist to implementing multidisciplinary care for EDS, including a lack of knowledge, comfort, and time managing EDS. In the absence of multidisciplinary care, patients are often forced to self-coordinate care. This can lead to gaps in care and a lack of clarity of medical ownership over the patient’s care. Integrated multidisciplinary clinics are sorely needed, but the development and implementation of such clinics is limited by resources and personnel. As such, the development of a multidisciplinary clinic can be daunting and may serve to discourage providers with competencies in EDS from attempting to develop this service. In this editorial, we share our experiences in developing a multidisciplinary clinic for EDS at a moderately-sized children’s hospital, relying on several core disciplines with established EDS clinical loads (ie, rheumatology, cardiology, genetics, and psychology). We discuss considerations for the expansion of this service, pitfalls, and barriers throughout the development of the clinic, and our rationale underlying our process-related decisions. Development of a greater number of multidisciplinary EDS clinics, even in the potential absence of larger institutional support, is both possible and imperative for improving EDS care globally.

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Resource utilization and multidisciplinary care needs for patients with Ehlers–Danlos syndrome

Cited by 11 publications

References 26 publications

Barriers to the Diagnosis, Care, and Management of Pediatric Patients With Ehlers-Danlos Syndrome in the United States: A Qualitative Analysis

Barriers to the Diagnosis, Care, and Management of Pediatric Patients With Ehlers-Danlos Syndrome in the United States: A Qualitative Analysis

Gender dysphoria in adolescents with Ehlers–Danlos syndrome

Development of a Multidisciplinary Clinic for Patients with Ehlers Danlos Syndromes: Considerations and Strategies

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