Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers–Danlos syndrome

Berglund, Bo; Mattiasson, Anne‐Cathrine; Randers, Ingrid

doi:10.3109/09638280903178407

Cited by 85 publications

(78 citation statements)

References 23 publications

(43 reference statements)

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“…Results from the present review and the literature in general show that lack of expertise among health care providers runs as a major barrier for people with rare diseases (Aym e et al 2008;Berglund et al 2010;Budych et al 2012;Grut and Kvam 2013). Therefore, people with chronic conditions frequently use the Internet to locate disease information and find peer support (Ayers and Kronenfeld 2007), as was found in the present review.…”

Section: Lack Of Knowledge About Rare Conditionssupporting

confidence: 58%

Living with a rare disorder: a systematic review of the qualitative literature

Lippe

Diesen

Feragen

2017

Molec Gen & Gen Med

206

207

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BackgroundIndividuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. A wide range of different rare conditions has resulted in a myriad of studies investigating the specificities of the diagnosis in focus. The shared psychological experiences of individuals with a rare condition, however, have not been reviewed systematically.MethodsWe performed a systematic review, including qualitative studies on adults, published between 2000 and 2016. Papers including more than one rare genetic or nongenetic diagnosis were included. Studies based on single diagnoses were excluded except for four specific conditions: hemophilia (bleeding disorder), phenylketonuria (metabolic disorder), Fabry disease (lysosomal storage disorder), and epidermolysis bullosa (skin disorder).ResultsThe review identified 21 studies. Findings were synthesized and categorized according to three main themes: (1) Consequences of living with a rare disorder, (2) Social aspects of living with a rare disorder, and (3) Experiences with the health care system. Findings point to several unique challenges, such as the psychological, medical, and social consequences of a lack of knowledge about the condition in health care and social settings.ConclusionThe findings highlight the need for more research on the shared psychological and social impact of living with a rare diagnosis across conditions, in order to identify risk factors and inform clinical practice.

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Section: Lack Of Knowledge About Rare Conditionssupporting

confidence: 58%

Living with a rare disorder: a systematic review of the qualitative literature

Lippe

Diesen

Feragen

2017

Molec Gen & Gen Med

206

207

View full text Add to dashboard Cite

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“…With the increased popularity of wheelchair sports, new wheelchair designs are being continually developed to improve aspects such as acceleration, maximal speed and turning capacity and to prevent tipping over so to fit specific sport needs [21,22]. Wheelchairs can now be altered in many ways and a variety of studies [23-25] have shown that the chair set up can alter propulsion biomechanics in ways that may be beneficial for both sport performance and reducing injury risk.…”

Section: Methodsmentioning

confidence: 99%

“…However, sophisticated biomechanical and physiological measurements outside the lab and on the track are becoming more feasible due to the further development and miniaturisation of monitoring devises, portable metabolic analysers and motion sensor technology [21,43]. Especially in wheelchair sports, this opens up new avenues for performance related research, although the consistency of the environmental conditions may need to be considered in order to ensure sufficient reliability of the acquired data [42].…”

Section: Methodsmentioning

confidence: 99%

Constraints influencing sports wheelchair propulsion performance and injury risk

Churton

Keogh

2013

BMC Sports Sci Med Rehabil

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The Paralympic Games are the pinnacle of sport for many athletes with a disability. A potential issue for many wheelchair athletes is how to train hard to maximise performance while also reducing the risk of injuries, particularly to the shoulder due to the accumulation of stress placed on this joint during activities of daily living, training and competition. The overall purpose of this narrative review was to use the constraints-led approach of dynamical systems theory to examine how various constraints acting upon the wheelchair-user interface may alter hand rim wheelchair performance during sporting activities, and to a lesser extent, their injury risk. As we found no studies involving Paralympic athletes that have directly utilised the dynamical systems approach to interpret their data, we have used this approach to select some potential constraints and discussed how they may alter wheelchair performance and/or injury risk. Organism constraints examined included player classifications, wheelchair setup, training and intrinsic injury risk factors. Task constraints examined the influence of velocity and types of locomotion (court sports vs racing) in wheelchair propulsion, while environmental constraints focused on forces that tend to oppose motion such as friction and surface inclination. Finally, the ecological validity of the research studies assessing wheelchair propulsion was critiqued prior to recommendations for practice and future research being given.

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“…Furthermore, the lack of a diagnosis and inadequate care causes patients to feel defeated, which result in negative impressions about doctors and the health care system. The lasting impact of these impressions can have detrimental consequences on patients' health by deterring them from seeking care, even when symptoms become severe or life-threatening (Berglund, Anne-Cathrine, & Randers, 2010;Clark & Knight, 2017).…”

mentioning

confidence: 99%

Utilization of the 2017 diagnostic criteria for hEDS by the Toronto GoodHope Ehlers–Danlos syndrome clinic: A retrospective review

McGillis

Mittal

Mina

et al. 2019

American J of Med Genetics Pt A

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The new 2017 diagnostic criteria for hypermobile Ehlers–Danlos Syndrome (hEDS) provide a framework for diagnosing hEDS but are more stringent than the previous Villefranche criteria. Our clinical experience at the GoodHope EDS clinic was that the 2017 criteria left many highly symptomatic patients without a diagnosis of hEDS. We conducted a retrospective cohort study to confirm our clinic experience and assess the accuracy of the 2017 diagnostic criteria for hEDS in patients who had a previous hEDS diagnosis based on the Villefranche criteria. Our study found that 15% (n = 20 of 131) of patients with a prior diagnosis of hEDS met the 2017 diagnostic criteria, and many of the traits used to distinguish hEDS were not significantly more frequent in patients who met 2017 criteria versus those who did not. In both groups objective systemic manifestations were found less frequently than subjective systemic manifestations. Beighton score (BS) as assessed by primary care practitioner was found to be higher than assessment by EDS practitioner in 81% (n = 74 of 91) of cases. Generalized joint hypermobility was confirmed in only 46% (n = 51 of 111) of patients who had a previous diagnosis of hEDS. Higher BS did not correlate with increased number of systemic manifestations in our cohort. Common comorbidities of hEDS were found with similar frequency in those who met 2017 criteria and those who did not. Based on our cohort, the 2017 hEDS diagnostic criteria require refinement to improve its diagnostic accuracy.

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Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers–Danlos syndrome

Cited by 85 publications

References 23 publications

Living with a rare disorder: a systematic review of the qualitative literature

Living with a rare disorder: a systematic review of the qualitative literature

Constraints influencing sports wheelchair propulsion performance and injury risk

Utilization of the 2017 diagnostic criteria for hEDS by the Toronto GoodHope Ehlers–Danlos syndrome clinic: A retrospective review

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