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

Abstract

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.

Translating Research into Change: Reporting the Lived Experience of hEDS and HSD in Scotland

“…A 2023 paper found that people with hEDS who report lower satisfaction with their healthcare providers experience a marked reduction in their healthrelated quality of life. This research also found that the most commonly reported theme when patients were asked about what changes they would make to improve healthcare services was improved education and awareness of hEDS and HSD among HCPs [70].…”

Looking back and beyond the 2017 diagnostic criteria for hypermobile Ehlers‐Danlos syndrome: A retrospective cross‐sectional study from an Italian reference center

“…A typical multidisciplinary team should include medical geneticists to confirm diagnosis, provide genetic counseling, and identify associated conditions; rheumatologists to evaluate and manage joint pain, instability, and other orthopedic issues; pain specialists to develop pain management strategies; physiotherapists to develop tailored exercise programs that minimize joint strain; neurologists to evaluate neurological symptoms and provide treatment for conditions such as headaches and neuropathic pain; psychiatrists to diagnose and medically manage mental health conditions through pharmacological interventions; psychotherapists and psychologists to develop coping strategies and lifestyle interventions for managing anxiety, depression, and other mental health challenges; gastroenterologists to assess and treat gastrointestinal issues such as dysmotility, nausea, vomiting, and abdominal pain; nutritionists to recommend dietary changes that may alleviate symptoms and promote overall health; hematologists to evaluate and manage easy bruising and excessive bleeding; and cardiologists to monitor for signs of vascular abnormalities, heart valve problems, and rhythm issues. Each specialist contributes unique expertise, perspectives and interventions that collectively aim to improve patients' quality of life by broadly targeting their multiple sources of suffering (Atwell et al, 2021; Demes et al, 2020; Estrella & Frazier, 2023; Spanhove et al, 2023; Yew et al, 2021).…”

“…Thus, the high frequency of comorbidities in chronic illnesses like chronic fatigue syndrome or hEDS/HSD present challenges for researchers trying to identify primary causes and effective treatments. Another Each specialist contributes unique expertise, perspectives and interventions that collectively aim to improve patients' quality of life by broadly targeting their multiple sources of suffering (Atwell et al, 2021;Demes et al, 2020;Estrella & Frazier, 2023;Spanhove et al, 2023;Yew et al, 2021).…”

“…Currently, for physicians treating these patients, the principles and types of multidisciplinary management, including the identification of the JHM‐associated comorbidities that often are more debilitating than joint symptoms, are essentially the same for hEDS and HSD, as both conditions require awareness, recognition, validation, and care (Anderson & Lane, 2021; Atwell et al, 2021; Bennett et al, 2022; Demes et al, 2020; Estrella & Frazier, 2023; Robbins, 2022; Spanhove et al, 2023; Yew et al, 2021).…”

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

“…Patients with EDS may be misdiagnosed, poorly understood, and inadequately managed by healthcare professionals [ 16 , 17 ]. There are several common comorbid conditions, including: dysautonomia, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome/disorder (MCAS/MCAD), craniocervical instability (CCI), anxiety, depression [ 18 ], migraine [ 19 ], gastrointestinal distress [ 20 ], temporomandibular joint disorder (TMJ), fibromyalgia, and arthritis [ 21 ], and in this paper these conditions will be referred to as “related disorders.” Patients with EDS therefore need clinical support from a wide range of medical experts.…”