Dataset Information

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

ABSTRACT:

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.

SUBMITTER: Wagner W

PROVIDER: S-EPMC10938836 | biostudies-literature | 2024 Mar

REPOSITORIES: biostudies-literature

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Publications

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

Wagner Wendy W Doyle Tom A TA Francomano Clair A CA Knight Dacre R T DRT Halverson Colin M E CME

Orphanet journal of rare diseases 20240314 1

<h4>Background</h4>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 b ...[more]

PMID: 38486236

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Project description:ObjectiveChronic pain is a common manifestation of Ehlers-Danlos syndrome and hypermobility spectrum disorders; thus it is often suggested that patients undergo generic interdisciplinary pain rehabilitation, despite there being little evidence to support this decision. The aim of this study is to examine the effectiveness of standard rehabilitation programmes for chronic pain on patients with Ehlers-Danlos syndrome and hypermobility spectrum disorders, compared with patients with other chronic pain disorders.SubjectsData, collected between 2008 and 2016, were extracted from a Swedish national registry. The patient data comprised of 406 cases with Ehlers-Danlos syndrome or hypermobility spectrum disorders, 784 cases with a whiplash-related diagnosis, 3713 cases with diagnoses relating to spinal pain, and 2880 cases of fibromyalgia.MethodsThe differences between groups on key outcome measures from pre- to 1-year follow-up after interdisciplinary pain rehabilitation were analysed using linear mixed effects models. Sensitivity analysis in the form of pattern-mixture modelling was conducted to discern the impact of missing data.ResultsNo significant differences were found in improvements from pre- to 1-year follow-up for patients with Ehlers-Danlos syndrome or hypermobility spectrum disorder compared with other diagnostic groups regarding measures of health-related quality of life, mental health, or fatigue. At follow-up, differences in pain interference (d = -0.34 (95% confidence interval [95% CI] -0.5 to -0.18)), average pain (d = 0.22 (95% CI 0.11-0.62)) and physical functioning (d = 2.19 (95% CI 1.61-2.77)) were detected for the group with spinal-related diagnoses in relation to those with EDS/HSD, largely due to pre-treatment group differences. Sensitivity analysis found little evidence for missing data influencing the results.ConclusionThis study suggests that patients with Ehlers-Danlos syndrome/hypermobility spectrum disorders may benefit from inclusion in an interdisciplinary pain rehabilitation programme.

Project description:BackgroundThis study describes aspects of pain and how pain affects everyday life and examines the relation between chronic pain and activity limitations in people with hypermobility spectrum disorders (HSD) or hypermobility Ehlers Danlos syndrome (hEDS).MethodsThis cross-sectional study used data from 2016 to 2021 obtained from the Swedish quality registry for pain rehabilitation (SQRP), comparing those with HSD/hEDS with the larger group of people with mixed chronic pain conditions as a reference group (RG).ResultsOf the 43,801 people registered in the SQRP, 1211 (2.8%) were diagnosed with HSD/hEDS (88.9% women). The mean age of the HSD/hEDS group was younger (36.3 ± 11.8) than the RG (45.7 ± 12.8). The HSD/hEDS group had a statistically significant (p < 0.001) earlier onset of pain (calculated in years) in contrast to the RG. In the HSD/hEDS group, 80.1% had persistent pain; in the RG, 74.2% had persistent pain. The HSD/hEDS group reported more pain locations (20.0 ± 7.9) than the RG (14.8 ± 8.8). The HSD/hEDS group reported more problems performing leisure, social, and household activities than the RG; however, pain intensity was statistically significantly lower (p < 0.001) in the HSD/hEDS related to the RG.ConclusionsThere were indications that pain affected daily activities for people with HSD/hEDS, who had earlier onset of pain, marked more pain locations, and had more persistent pain, but pain intensity was not as decisive in contrast to the RG.Significance statementIn a comparison yielding statistically significant results (p < 0.001), persons with hypermobility spectrum disorder (HSD) or hypermobility Ehlers-Danlos syndrome (hEDS) reported earlier pain onset, longer pain durations, and a greater number of pain locations but surprisingly, lower pain intensity than the reference group which consisted of a mixed group of pain conditions. These pain characteristics affected daily activities, indicating a substantial impact on daily life for those with HSD/hEDS.

Dataset Information

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

Background

Results

Conclusions

Publications

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets

Dataset Information

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the ﻿Chicagoland region.

Background

Results

Conclusions

Publications

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the ﻿Chicagoland region.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.