Parents’ experiences of children’s health care for hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders

Abstract

Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are underdiagnosed hereditary connective tissue disorders requiring health care across specialties. Using mixed methods, we explored how parents have experienced children's health care for hEDS/HSD. Surveyed parents (N = 297) reported varying experiences, though professional understanding was negatively appraised by most parents. Themes identified from interviews (n = 13) were: (1) awareness and understanding are fundamental, (2) the importance of the therapeutic relationship, (3) limitations of healthcare systems, and (4) diagnostic labels are meaningful. Findings suggest that achieving person-centered care may broadly improve health care for families with hEDS/HSD.

Ehlers–Danlos syndromes, hypermobility spectrum disorders, and associated co‐morbidities: Reports from EDS ECHO

“…In addition, misconceptions that the issues are solely mental health concerns are commonly reported. Too often there is more than a decade delay in diagnosis, and the negative impact on quality of life from living with under-managed disease is significant (Bell & Pearce, 2021;Berglund, Pettersson, Pigg, & Kristiansson, 2015;Castori, Camerota, Celletti, Grammatico, & Padua, 2010;Demmler et al, 2019;Mu et al, 2019).…”

The value of dynamic elastomeric fabric orthoses in the management of a complex hypermobile Ehlers‐Danlos syndrome patient: A case report

“…The consultant Rheumatologist also liaised with the patient's orthopedic hip surgeon as there is a strong correlation between joint hypermobility and hip dysplasia 44 . The patient reported that she felt listened to, felt the value of understanding her own body better, and felt having a “label” helped her explain her problems to family, friends, and work colleagues 9 . She shared with us that she had previously “lost her faith” in physiotherapy, as exercises prescribed by past practitioners had caused pain exacerbation, so it was important for us to build trust and a relationship to help find a way of improving her strength, proprioception, and function.…”

The value of Dynamic Movement Orthoses in the management of a complex Hypermobile Ehlers-Danlos Syndrome patient: a case report

“…Therefore, they made an onward referral to a Cardiologist and for a tilt table test [4,22,23]. The patient reported that she felt listened to, felt the value of understanding her own body better and felt having a 'label' helped her explain her problems to family, friends and work colleagues [9]. She shared with us that she had previously 'lost her faith' in physiotherapy, as exercises prescribed by past practitioners had caused pain exacerbation, so it was important for us to build trust and a relationship to help find a way of improving her strength, proprioception and function.…”

“…This group of patients are poorly recognised and poorly understood, as highlighted in recent studies of healthcare experiences [9,10,11]. Physiotherapists play a central role in management, yet many practitioners fail to recognise the complexity of these patients and that inappropriate treatment may be detrimental to their management [7,12].…”

“…Physiotherapists play a central role in management, yet many practitioners fail to recognise the complexity of these patients and that inappropriate treatment may be detrimental to their management [7,12]. Existing studies have highlighted the psychological impact of this condition and recommend early detection to assist optimum management [9,13]. Health care practitioners therefore need increased awareness of hEDS.…”