Background
Joint hypermobility affects approximately 30% of the population [
1] and is characterised by joints that are able to move actively and/or passively beyond the normal physiological limits [
2]. Conditions associated with joint hypermobility include hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndrome (EDS) [
3,
4], with prevalence varying from 0.2% in Wales [
5] to 3% in the UK [
6]. Alongside flexibility of the joints, another common accompanying physical complaint from those with hypermobility is joint pain [
4]. Individuals with hypermobility can experience a broad range of symptoms, meaning presentations often vary from person to person. It is because the symptoms are so varied that patients can be seen by and referred to a number of different healthcare professionals (HCPs); examples include orthopaedic clinicians [
7], rheumatologists [
8] and physiotherapists [
8].
These connective tissue disorders are lifelong conditions that affect individuals across physical, psychological and social levels with a number of daily consequences [
9]. A focus group by Terry et al. [
8] provided invaluable insights into the lived experiences of individuals with joint hypermobility syndrome (JHS), highlighting the negative biopsychosocial impact of the condition. The group reported unpredictable and debilitating symptoms of fatigue and pain. As a result of these symptoms, participants would subsequently experience pain catastrophising, increased levels of anxiety and activity restrictions. Due to a lack of understanding of JHS amongst HCPs, the sample experienced delays to diagnosis which cause them to feel fraudulent and stigmatised. This finding has been supported and further explained in that pain and fatigue are non-observable symptoms [
10]. Once diagnosed, however, the participants in the focus group described their symptoms feeling validated and were ultimately psychologically relieved.
Research has further evidenced that individuals with HSD and EDS are much more likely to experience psychosocial implications such as anxiety, depression and a lower health-related quality of life [
11,
12]. Furthermore, these patients have demonstrated a significantly lower level of participation in societal activities when compared to a healthy group of individuals [
13]. This can be attributed to the aforementioned debilitating symptoms such as chronic pain in patients with HSD/EDS. In addition, an individual’s pain experience tends to be exacerbated by comorbid psychological conditions [
9]. Despite the literature citing the significance of these psychosocial factors [
10], little effort has been made to develop an in-depth understanding of these factors and how to effectively manage them, with the focus primarily being on a physical level. Developing the understanding of HSD and EDS on a broader, biopsychosocial level is essential in order to increase awareness amongst HCPs, allowing them to provide better quality of care and the necessary psychological support [
10]. This has the potential to improve the overall quality of life for the individual living with this long-term condition [
9].
The primary objective of this scoping review is to therefore systematically scope the known biological, psychological and social (biopsychosocial) impact of HSD and EDS in an adult population. Increasing the understanding of the impact will benefit HCPs and the individual’s themselves and allow for the development of appropriate interventions to assist management and improve information provision [
10,
12].
A preliminary search for existing scoping and systematic reviews on hypermobility within the last 10 years in the English language was conducted using a single electronic database, MEDLINE. The search terms used were “joint hypermobility” OR “Ehlers-Danlos syndrome” AND “scoping review” OR “systematic review”. The search generated 401 articles, following screening of the titles, and 34 articles were relevant to the above criteria. Just one scoping review was retrieved relating to urogenital and pelvic complications in EDS and associated HSD [
14]. The remaining 33 articles were systematic reviews on various topics relating to joint hypermobility and EDS. Therefore, there is limited evidence, if not no evidence, for previous scoping reviews on joint hypermobility as a whole, including a lack of reviews that examine the biopsychosocial impact exclusively.
Discussion
The primary research question and objective of the scoping review are to explore and understand the biological, psychological and social (biopsychosocial) factors and impact of joint hypermobility within adults as reported within the literature. Due to the inclusive eligibility criteria and wide range of terms proposed to use for the search strategy, the review will seek to additionally record measurements used, management of the condition and the HCPs involved as reported by the included studies. This extensive data collection and recording will assist in increasing the understanding of the condition beyond the primary research question, aiming to meet the additional outlined objectives of the scoping review. This will be the first scoping review for the biopsychosocial impact of joint hypermobility conditions. The findings of this review will be used to increase the understanding of the condition for both HCPs and individuals, develop a holistic assessment and inform appropriate pathways to effectively manage the condition.
Limitations
The scoping review aims to cover a broad range of areas within hypermobility and a wide range of study designs. Depending on the journal articles available, this may be difficult to collate and summarise. The pilot phase should ensure the latter is mitigated to an extent.
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