Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care

Abstract

Background.Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with ‘everyday’ non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation.Objective.The aim of the study was to examine patients’ lived experience of JHS, their views and experiences of JHS diagnosis and management.Methods.Focus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data.Results.Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential.Conclusions.Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.

The feasibility of a randomised controlled trial of physiotherapy for adults with joint hypermobility syndrome

“…Patients reported difficulties in being diagnosed and how they had encountered health professionals who they felt did not believe or understand their descriptions or their experiences of JHS. 49 The data indicate the importance of a timely diagnosis of JHS and referral for specialist care in order to facilitate effective treatment of JHS. Physiotherapy was viewed as beneficial if used to manage JHS holistically rather than to treat acute injuries in isolation.…”

“…Findings from this component have previously been published as peer-reviewed journal articles. 49,50 Objectives The specific objectives were as follows:…”

A humanisation approach for the management of Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT)

“…Objectification relates to a person being described or categorsied in an objective way with a label or stamp. Those with JHS/EDS-HT report being labelled as “psychosomatic” or told the symptoms they are reporting are “all in the mind” (Terry et al, 2015). This may occur when a patient presents with an acute set of symptoms that are difficult to clinically reason.…”

“…This lack of choice may impact on a person’s sense of control, which contributes to feelings of anxiety. Those with JHS/EDS-HT have reported being prescribed treatments that provide little benefit and reduce their control of the situation (Terry et al, 2015), forcing them into being passive recipients of an intervention they do not understand. As HPs juggle the many competing elements of their roles there are benefits in encouraging those with JHS/EDS-HT to become active participants in the management of their condition (Alder, 2002; Charon, 2001; Peterkin, 2012).…”

Síndrome De Hipermobilidade Articular Nos Pacientes Com Disfunções Do Diafragma Da Pelve: Revisão De Literatura

“…É ocasionada pela frouxidão ou comprimento excessivo do tecido, que leva ao aumento da amplitude de movimento além do normal, e pode estar acompanhada de queixas dolorosas (1) . Descrita pela primeira vez em 1967, a Síndrome de Hipermobilidade Articular (SHA) identifica-se pela associação da Hipermobilidade Articular (HA) com doenças musculoesqueléticas (2) e é caracterizada como uma desordem hereditária do tecido conectivo que pode desencadear luxação, subluxação, artralgia, artrite, tendinite, tenossinovite, ligamentos danificados e fraturas, existindo associação com dor nas articulações e instabilidade (5) e, geralmente, é avaliada utilizando-se os critérios de Brighton, que inclui a pontuação de Beighton (6) . Os critérios de Brighton são divididos em critérios maiores e critérios menores.…”