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Harte H1, Thomas H1, Beeton K1
1University of Hertfordshire, Health & Social Work, Hatfield, United Kingdom
Background: Hypermobile Ehlers Danlos Syndrome (hEDS) is considered by many academics and physicians to be an emergent condition; a disease of the 21st Century, which has a significant impact on quality of life for the person living with the condition, their social networks and their sense of self (Murray et al 201; Grahame, 2013). Characterised by excessive joint laxity, pain, fatigue and autonomic dysfunction, these physical signs represent just one challenge to be overcome. The emotional, psychological and social impact of the condition can be enormously disabling as people with hEDS campaign to be understood, battling against the stigma of a frequently contested diagnosis (Terry et al 2015).
Purpose: To explore what is known in the existing literature about how women come to be diagnosed with hEDS, how they feel about it, and how life is affected around this time.
Methods: Over the period June to September 2017, a strategic literature search was conducted of CINAHL Plus, the Cochrane Library, NHS Evidence and Medline using the key terms “Ehlers Danlos”, “Joint Hypermobility”. These terms were then combined with “Diagnosis”, “Impact” and “Experience” and limited to Adult populations and English language.
Twenty-five complete papers were retrieved for review. Lateral searches were conducted on the reference lists of these papers and an additional 6 papers identified. Of the 31 total papers retrieved, 16 were suitable for inclusion in the Narrative review.
Results: 4 major themes were identified in the literature:
· People presenting with pain being greeted with scepticism, treated with suspicion and are left feeling rejected by the medical community.
· Women graft to maintain self-esteem and credibility. Attempting to not appear too assertive nor too meek was effortful.
· Diagnosticians must engage with broader societal themes to provide an integrated public health response and intervention on a macro level.
· Diagnosis should be considered as a socio-political process rather than biomedical practice representing a shift in the balance of power.
Conclusion(s): Little has been published that considers the impact of diagnosis on the person living with hEDS. Many of the studies that have been produced use a questionnaire design to measure either the impact of hEDS, or the Quality of life of people living with EDS. These papers lay claim that life with hEDS is negatively impacted, with social and emotional difficulties endured as an outward expression of biomedical dysfunction (Rombaut et al., 2011; Johannessen et al., 2016; Palmer et al., 2017).
Implications: The lack of depth and authentic insight achieved through structured questionnaire research leaves gaps in the collective understanding which require further scrutiny through the expansion and refinement of qualitative studies in this under-researched area.
Keywords: Ehlers Danlos, Diagnosis, Patient Experience
Funding acknowledgements: A £1500 award from the Chartered Society of Physiotherapy, Educational Award
Purpose: To explore what is known in the existing literature about how women come to be diagnosed with hEDS, how they feel about it, and how life is affected around this time.
Methods: Over the period June to September 2017, a strategic literature search was conducted of CINAHL Plus, the Cochrane Library, NHS Evidence and Medline using the key terms “Ehlers Danlos”, “Joint Hypermobility”. These terms were then combined with “Diagnosis”, “Impact” and “Experience” and limited to Adult populations and English language.
Twenty-five complete papers were retrieved for review. Lateral searches were conducted on the reference lists of these papers and an additional 6 papers identified. Of the 31 total papers retrieved, 16 were suitable for inclusion in the Narrative review.
Results: 4 major themes were identified in the literature:
· People presenting with pain being greeted with scepticism, treated with suspicion and are left feeling rejected by the medical community.
· Women graft to maintain self-esteem and credibility. Attempting to not appear too assertive nor too meek was effortful.
· Diagnosticians must engage with broader societal themes to provide an integrated public health response and intervention on a macro level.
· Diagnosis should be considered as a socio-political process rather than biomedical practice representing a shift in the balance of power.
Conclusion(s): Little has been published that considers the impact of diagnosis on the person living with hEDS. Many of the studies that have been produced use a questionnaire design to measure either the impact of hEDS, or the Quality of life of people living with EDS. These papers lay claim that life with hEDS is negatively impacted, with social and emotional difficulties endured as an outward expression of biomedical dysfunction (Rombaut et al., 2011; Johannessen et al., 2016; Palmer et al., 2017).
Implications: The lack of depth and authentic insight achieved through structured questionnaire research leaves gaps in the collective understanding which require further scrutiny through the expansion and refinement of qualitative studies in this under-researched area.
Keywords: Ehlers Danlos, Diagnosis, Patient Experience
Funding acknowledgements: A £1500 award from the Chartered Society of Physiotherapy, Educational Award
Topic: Disability & rehabilitation; Pain & pain management; Research methodology & knowledge translation
Ethics approval required: No
Institution: University of Hertfordshire
Ethics committee: N/A
Reason not required: Narrative review
All authors, affiliations and abstracts have been published as submitted.
