Understanding hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders in the context of childbearing: An international qualitative study

Pezaro, Sally; Pearce, Gemma; Reinhold, Emma

doi:10.1016/j.midw.2020.102749

Cited by 15 publications

(54 citation statements)

References 33 publications

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“…[the doctor] basically said, ‘No, you can't.’ and… carried on” (Bennett et al, 2021, p. 798). Another stated, “I can still vividly remember the feeling of the thread [suturing] being pulled through my skin” (Pezaro et al, 2020, p. 8).…”

Section: Resultsmentioning

confidence: 99%

“…Six studies had primary authors from the field of rehabilitation (Bennett et al, 2021; De Baets et al, 2017, 2019; Palmer et al, 2016, 2019; Sætre & Eik, 2019). Other disciplines represented in the studies' authors included genetics (Bovet et al, 2016; De Baets et al, 2017, 2019), psychology (De Baets et al, 2017, 2019; Friedner, 2020; Pezaro et al, 2020; Schmidt et al, 2015; Terry et al, 2015), rheumatology (Schmidt et al, 2015), podiatry (Palomo-Toucedo et al, 2020), nursing (Palomo-Toucedo et al, 2020; Pezaro et al, 2020), community medicine (Terry et al, 2015), neuroscience (Schmidt et al, 2015; Terry et al, 2015), and child health (Terry et al, 2015). Only one study reported the time from symptom onset to diagnosis in their participants.…”

Section: Resultsmentioning

confidence: 99%

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The diagnostic journey in adults with hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders

Anderson

Lane

2021

J Am Assoc Nurse Pract

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Background: Researchers have identified lengthy diagnosis delays in patients with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders (hEDS/HSD), but the reason for these delays is unclear.Objective: This review seeks to synthesize the existing qualitative research about hEDS/HSD to understand the reasons for diagnosis delay.Data sources: We searched PubMed, Scopus, CINAHL, Google Scholar, and Dissertations and Theses databases for all qualitative studies about hEDS/HSD that mentioned the diagnosis process. A total of 283 studies were retrieved, from which we identified 13 studies to include in this synthesis. Conclusions:The reviewers identified and organized diagnosis delay themes under four overarching categories: disease, patient, provider, and system. Disease factors included the nature of the symptoms and lack of a confirmatory test. Patient factors included psychological and emotional responses, seeing multiple providers, and receiving multiple diagnoses. Provider factors related to limited knowledge and attitudes. System factors included silobased health care systems and bureaucratic barriers.Implications for practice: Diagnosis delays result from complex, overlapping, and interacting factors. Nurse practitioners have a critical role in improving care and reducing diagnosis delays in patients with hEDS/HSD. Further research is needed to understand the causes and consequences of diagnosis delays in hEDS/HSD.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

The diagnostic journey in adults with hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders

Anderson

Lane

2021

J Am Assoc Nurse Pract

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“…There is anecdotal evidence that the latent phase of labor can be longer in EDS, while the active phase of labor is rapid. The second stage of labor is shorter, presumably due to the elasticity of the pelvic tissue (Pezaro, Pearce, & Reinhold, 2020). Hypermobility was associated with decreased odds of cesarean delivery or operative vaginal delivery once complete cervical dilatation was achieved (Knoepp, McDermott, Munoz, reported six of eight hEDS patients had a cesarean delivery.…”

Section: Labormentioning

confidence: 99%

“…Looking for a better biopsychosocial understanding of childbearing, qualitative data were acquired through narrative interviews of 40 women with hEDS or HSD who had given birth (Pezaro et al, 2020). The participants were recruited through social media, and most interviews were conducted using a secure text-based instant messaging method.…”

Section: Labormentioning

confidence: 99%

Obstetrics and gynecology in Ehlers‐Danlos syndrome: A brief review and update

Blagowidow

2021

American J of Med Genetics Pt C

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The Ehlers-Danlos syndromes (EDSs) are a group of hereditary disorders affecting collagen and connective tissue. Gynecologic and obstetric complications occur with increased frequency and severity due to these abnormalities. Recent studies suggest that some complications, including endometriosis and premature rupture of the membranes may occur less often than previously thought. In addition, having a known diagnosis allows anticipatory planning, resulting in lower morbidity from hemorrhage and tissue injury. With continued progress in understanding the underlying mechanisms of EDS, more effective treatments can be developed.

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“…In this article, we investigate the lived experiences of patients who have received clinical diagnoses of hEDS, something that has received little attention to this point (Bennett, Walsh, Moss, & Palmer, 2019; but see Pezaro, Pearce, & Reinhold, 2020;Terry et al, 2015). Our aim is to examine the diagnostic odyssey, its pitfalls and complexity, and the features that lead encounters along its path to be viewed as "difficult" by clinicians and patients.…”

mentioning

confidence: 99%

Patients with Ehlers–Danlos syndrome on the diagnostic odyssey: Rethinking complexity and difficulty as a hero's journey

Halverson

Clayton

Sierra

et al. 2021

American J of Med Genetics Pt C

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Patients with hypermobile Ehlers-Danlos syndrome, an hereditary disorder of the connective tissue, often face a long and difficult diagnostic odyssey in pursuit of a name for their condition. Clinicians may dismiss subjective symptoms of chronic pain, thus prolonging patients' odysseys and worsening their care and satisfaction and creating antagonisms in the patient-provider relationship. A greater understanding of patient experiences is necessary in order to decrease burdens of this relationship and to improve care. To that end, we conducted 22 in-depth, semistructured interviews with individuals who had undergone this diagnostic odyssey. We focused on the impact that the odyssey had on their lives, both inside and outside the clinic. Through narrative analysis, we found a sort of "hero's journey" in the description of their cases, highlighting issues of uncertainty and integration as well as honoring their struggles. Interviewees had encountered difficulties in working with clinicians, in multiplying symptoms, and in negative psychosocial consequences. Attention to patients' lived experience may help to build empathy and understanding for the difficult and complex clinical situation presented by Ehlers-Danlos syndrome. Using the hero's journey as a lens onto this experience allows for a more patient-centered approach to this understanding and has potential value for comprehension of other complex diseases and invisible illnesses.

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Understanding hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders in the context of childbearing: An international qualitative study

Cited by 15 publications

References 33 publications

The diagnostic journey in adults with hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders

The diagnostic journey in adults with hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders

Obstetrics and gynecology in Ehlers‐Danlos syndrome: A brief review and update

Patients with Ehlers–Danlos syndrome on the diagnostic odyssey: Rethinking complexity and difficulty as a hero's journey

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