Patient experience of chronic illness care and complementary integrative health use: a cross-sectional study of patients with hypermobility spectrum disorders (HSD) and Ehlers–Danlos syndromes (EDS)

Guedry, Sara E.; Langley, Blake O.; Schaefer, Kerry; Hanes, David A.

doi:10.1080/09638288.2022.2131003

Cited by 4 publications

(3 citation statements)

References 37 publications

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“…Accessibility/convenience and financial aspects, two themes derived from the PSQ-18, followed negative attitudes as the most reported themes. Although these themes have been discussed less often in previous research on hEDS and HSD, U.S. patients with HSD/hEDS who had shorter visits with their providers were less satisfied with their care [18], and some parents of children with HSD/hEDS in the UK have described switching to private healthcare when able to afford it [15]. In descending order, the next themes were wanting better treatment options [2,29], better diagnostic processes [10], better coordination of care [15,16], not being given psychological explanations for their symptoms [ 3,17], and wanting better patient education [21].…”

Section: Discussionmentioning

confidence: 91%

“…In another mixed-methods study (N = 234), almost half of the participants (45%) reported having unmet medical needs, and nearly half of those reported experiencing institutional betrayal, including professionals' lack of knowledge or willingness to learn about EDS [17]. Finally, in a recent study examining satisfaction with chronic illness care among HSD and EDS patients from both the US and Canada, participants had scores below the midpoint on almost all scales assessing chronic illness care (e.g., goal setting, follow-up/ coordination) [18].…”

Section: Healthcare Experiences Among Adults With Hypermobile Ehlers-...mentioning

confidence: 98%

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Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States

Estrella

Frazier

2023

Disability and Rehabilitation

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This cross-sectional mixed-method study examined healthcare experiences among individuals in the US with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), genetic connective tissue disorders. We hypothesized that many individuals with these conditions would report low satisfaction with healthcare and low health quality of life, and that lower healthcare satisfaction would be related to lower health-related quality of life and self-efficacy for symptom management.Methods: Adults living in the US with hEDS or HSD (N = 2,125) completed an online survey assessing satisfaction with healthcare, health-related quality of life, and symptom management self-efficacy. Qualitative data also were gathered on desired changes to improve healthcare. Results:Participants reported low satisfaction with healthcare and lower health-related quality of life and symptom management self-efficacy than norm groups. Lower satisfaction with healthcare was associated with lower health-related quality of life and lower symptom management self-efficacy, ps <.001. The most common desired change to improve healthcare was more knowledge about hEDS and HSD among healthcare professionals.Conclusions: U.S. adults with joint hypermobility report negative healthcare experiences and poor health quality of life. Future research should explore ways to improve the healthcare experiences and quality of care for individuals with hEDS and HSD.

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Section: Discussionmentioning

confidence: 91%

Section: Healthcare Experiences Among Adults With Hypermobile Ehlers-...mentioning

confidence: 98%

Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States

Estrella

Frazier

2023

Disability and Rehabilitation

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“…It not only delays appropriate treatment, but also places considerable psychological stress on the patients and families [ 12 ]. After receiving the diagnosis, patients see multiple doctors across specialties at different clinics, and report desires for multi-disciplinary care and support from patient community [ 8 , 10 , 13 ]. The uncoordinated care leads to worsened health outcomes and a significant decline in the quality of life, posing challenges to patients and families, as well as healthcare professionals.…”

Section: Introductionmentioning

confidence: 99%

Diagnosis and treatment of the Ehlers-Danlos syndromes in China: synopsis of the first guidelines

Xu,

Li,

et al. 2024

Orphanet J Rare Dis

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Background The Ehlers-Danlos syndromes (EDS) are a group of rare hereditary connective tissue disorders. EDS is clinically and genetically heterogeneous and usually involves multiple systems. There are 14 subtypes of EDS with hallmark features including joint hypermobility, skin hyperextensibility, and tissue fragility. The clinical manifestations and their severity differ among the subtypes, encompassing recurrent joint dislocations, scoliosis, arterial aneurysm and dissection, and organ rupture. Challenges in diagnosis and management arise from the complexity of the disease, which is further complicated by its rarity. The development of clinical guidelines and implementation of coordinated multi-disciplinary team (MDT) approaches have emerged as global priorities. Main body Chinese Multi-Disciplinary Working Group on the Ehlers-Danlos Syndromes was therefore established. Healthcare professionals were recruited from 25 top hospitals across China. The experts are specialized in 24 fields, including genetics, vascular surgery, dermatology, and orthopedics, as well as nursing care, rehabilitation, psychology, and nutrition. Based on GRADE methodology, the Guidelines were written by the Group supervised by methodologists, following a systemic review of all 4453 articles in PubMed published before August 9, 2023, using the search term “Ehlers Danlos”. A coordinated MDT approach for the diagnosis and management of EDS is highly recommended by the Group, along with 29 specific recommendations addressing key clinical questions. In addition to the treatment plan, the Guidelines also emphasize integrating support from nursing care, rehabilitation, psychology, and nutrition. This integration not only facilitates recovery in hospital settings, but most importantly, the transition from an illness-defined life to a more “normalized” life. Conclusion The first guidelines on EDS will shorten the diagnostic odyssey and solve the unmet medical needs of the patients. This article is a synopsis of the full guidelines.

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Integrative medicine for hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS): a feasibility study

Guedry,

Langley,

Schaefer

et al. 2024

Disability and Rehabilitation

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Patient experience of chronic illness care and complementary integrative health use: a cross-sectional study of patients with hypermobility spectrum disorders (HSD) and Ehlers–Danlos syndromes (EDS)

Cited by 4 publications

References 37 publications

Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States

Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States

Diagnosis and treatment of the Ehlers-Danlos syndromes in China: synopsis of the first guidelines

Integrative medicine for hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS): a feasibility study

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