Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome”

Baets, Stijn De; Verhoost, Liesbeth; Coussens, Marieke; Dewandele, Inge; Malfait, Fransiska; Vanderstraeten, Guy; Hove, Geert Van; Velde, Dominique Van de

doi:10.1080/09638288.2019.1636316

Cited by 7 publications

(8 citation statements)

References 45 publications

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“…Participating in work contributes to the well-being and has positive health consequences. Need to udnerstand of the needs of people with hEDS and their participation in working life Nee, et al (2019) [ 44 ] Gastroenterology: Functional gastrointestinal disorder (FGIDs): IBS (57.8% vs 27%), IBS-C (13.4% vs 7.5%), IBS-D (11.8% vs 5.5%), dyspepsia (55.4% vs 25%), postprandial distress (49.9% vs 21.7%), epigastric pain (0.1% vs 0.2%), functional constipation (7.3% vs 5.3%), functional diarrhoea (0.7% vs 1.5%), heartburn (33.1% vs 16.8%), chest pain (2.1% vs 1%), dysphagia (28.5% vs 18.3%), globus (2.3% vs 1.2%), CVS (20.6% vs 10%), rumination (5.1% vs 1.7%), bloating (12.4% vs 16.3%), aerophagia (24.7% vs 12.3%), chronic idiopathic nausea (24.7% vs 7.2%), functional vomiting (4% vs 1.5%); Gynaecology: Pelvic floor symptoms: haemorrhoids (59.2% vs 42.5%), anal fissure (47.7% vs 20.5%), rectal prolapse (16.4% vs 6%), faecal incontinence (19.2% vs 11.2%), incomplete evacuation (83.3% vs 65.8%), suggestive of functional defecation (60.2% vs 34.5%), chronic proctalgia (14.3% vs 5.3%), proctalgia fugax (24.7% vs 14.7%), urinary incontinence (60% vs 38.8%), incomplete urinary voiding (75.3% vs 50.5%), hysterectomy for bleeding (13.5% vs 8.2%), uterine prolapse (13.1% vs 5.8%), endometriosis (24.1% vs 10.2%), rectocele (14.3% vs 3.7%) Miscellaneous: unhealthy mental health days QoL Prevalence of some FGIDs in MFS is high, similar to the prevalence in the general US population. EDS were significantly more likely to suffer from FGIDs compared MFS and the prevalence was higher than in the general population.…”

Section: Resultsmentioning

confidence: 99%

“…Similarly, these individuals also face difficulties in their professional lives, feeling unable to pursue their desired careers [ 20 ] or having to change their current role and handle less responsibilities [ 19 ]. These individuals additionally need to consider the accessibility of their workplace and their working environment to ensure it meets their needs and capabilities [ 44 ]. Changes to the individuals desired career path and working environment can contribute to reduced job satisfaction and feeling a lack of financial independence [ 44 ].…”

Section: Resultsmentioning

confidence: 99%

“…These individuals additionally need to consider the accessibility of their workplace and their working environment to ensure it meets their needs and capabilities [ 44 ]. Changes to the individuals desired career path and working environment can contribute to reduced job satisfaction and feeling a lack of financial independence [ 44 ].…”

Section: Resultsmentioning

confidence: 99%

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The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review

et al. 2023

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Joint hypermobility affects approximately 30% of the United Kingdom (UK) population, characterised by the ability to move joints beyond the physiological limits. Associated conditions include Ehlers-Danlos syndrome and hypermobility spectrum disorders, affecting individuals across physical, psychological and social levels detrimentally impacting their health and wellbeing. The scoping review aims to describe the known biopsychosocial impact of joint hypermobility conditions in adults over the last decade. Additional objectives include to (1) identify the types of studies that address these factors, (2) to understand how the impact of the condition is measured and managed and (3) what healthcare professionals (HCPs) are involved. The scoping review was conducted using the five-stage framework by Arksey and O’Malley. The search strategy related to two main keywords, “hypermobility” and, “biopsychosocial” across a number of electronic databases. A pilot search was conducted to determine the suitability of the databases and terms. Following the search, the data was extracted and charted, summarised and narratively reported. 32 studies met the inclusion criteria. The majority were conducted in either the UK or United States of America and case–control in design. The biopsychosocial impact was wide-ranging including, but not limited to, musculoskeletal system and dermatology, gastroenterology, mood and anxiety disorders, education and employments. This review is the first of its kind to summarise all reported symptoms and impact of joint hypermobility conditions in adults, highlighting a clear need to promote a multidisciplinary and holistic approach in raising awareness of these conditions and improving their management.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review

et al. 2023

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“…Most studies were conducted in the United Kingdom, with the remainder from Belgium, Norway, Spain, and the United States. 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).…”

Section: Resultsmentioning

confidence: 99%

“…Also, one study included patients and health care providers (Palmer et al, 2016), and another study used patients and their family members (Friedner, 2020). Data collection methods included individual in-person, telephone, or video conferencing interviews (Bennett et al, 2021; De Baets et al, 2017, 2019; Friedner, 2020; Palmer et al, 2016; Palomo-Toucedo et al, 2020; Pezaro et al, 2020; Schmidt et al, 2015; Sætre & Eik, 2019), synchronous text-message interviews (Pezaro et al, 2020), focus groups (Bovet et al, 2016; Palmer et al, 2016; Terry et al, 2015), and free-text responses to open-ended survey questions (Clark, 2012; Palmer et al, 2019). One study was a case analysis of a single family that used both individual and family group interviews (Friedner, 2020).…”

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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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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Gezondheid, welzijn en participatie

Arts-Tielemans¹,

Satink²,

Velde³

2022

Grondslagen Van Ergotherapie

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Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome”

Cited by 7 publications

References 45 publications

The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review

The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review

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

Gezondheid, welzijn en participatie

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