SEARCHSYSTEMATIC_REVIEWrheumatology, gastroenterology

systematic_review·rheumatology, gastroenterology, psychiatry, neurology, cardiology, dermatology, gynaecology, orthopaedics, respiratory medicine, pain medicine·PMC10126066

The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review

Rheumatology International · 5 authors, 3 centres

AI SUMMARY

FIDELITY 100%

POPULATIONAdults (≥18 years) with a clinical diagnosis of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD), including subtypes such as joint hypermobility syndrome (JHS) and benign joint hypermobility syndrome (BJHS). Sample sizes ranged from 1 to 2404; predominantly female (97% of studies).

INTERVENTIONNot applicable — this is a scoping review mapping reported symptoms, impact, and management; no single intervention was tested.

COMPARISONNot applicable — studies included case–control designs (31%), cross-sectional (25%), qualitative, and case reports; comparisons varied by study (e.g., healthy controls, migraine controls, Marfan syndrome controls).

This summary was generated by AI from a single paper. It has not been reviewed by a clinician and is not clinical advice. Verify against the source before acting on it.

AGENT 01 · STRUCTURED SUMMARY

TRACE TO SOURCE

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TL;DR

This scoping review of 32 studies maps the wide-ranging biopsychosocial impact of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) in adults. Gastrointestinal symptoms, mood disorders (depression 22–69%), and anxiety disorders (up to 75%) were the most frequently reported physical and psychological manifestations, with significant impacts on quality of life, employment, and social relationships. The findings highlight the need for a multidisciplinary, holistic approach to improve awareness, early diagnosis, and coordinated management of these conditions.

Full summary

4,618 CHARS

**Background:** Joint hypermobility affects approximately 30% of the UK population. The two most common associated conditions are Ehlers-Danlos syndrome (EDS), specifically hypermobile EDS (hEDS), and hypermobility spectrum disorders (HSD). Prevalence estimates range from 0.2% to 3% in the UK general population. These conditions affect individuals across physical, psychological, and social levels, yet remain underdiagnosed and poorly understood by healthcare professionals (HCPs). Diagnostic delays can extend to 10 years, contributing to health deterioration.

**Methods:** This scoping review was conducted using the five-stage framework by Arksey and O’Malley. Eight electronic databases (MEDLINE, EMBASE, AMED, CINAHL, PsycINFO, Cochrane Library, PubMed, PEDro) were searched on 30 May 2022, with a secondary search of clinical trial registries and reference lists on 30 July 2022. Search terms combined "hypermobility" and "biopsychosocial" with Boolean operators. Inclusion criteria: adults (≥18 years) with a clinical diagnosis of a joint hypermobility condition; studies investigating physical, psychological, and/or social impact; literature published 2012–2022. Exclusion criteria: inaccessible full-text, non-English articles, systematic/literature reviews. The search identified 1451 articles; after title review, duplicate removal, abstract review, and full-text assessment, 32 studies met inclusion criteria.

**Key Results:** Of the 32 included studies, most were conducted in the UK or USA (n=6 each, 19%) or France (n=4, 13%). Study designs were predominantly case–control (n=10, 31%) or cross-sectional (n=8, 25%). Sample sizes ranged from 1 to 2404; 97% of studies had predominantly female samples; mean age range was 20–68.5 years (SD 5.71–13.9). Diagnosis was most frequently confirmed using the Beighton Scoring System (31%) and Brighton Diagnostic criteria (28%).

Physical manifestations were reported in 97% of studies. Musculoskeletal symptoms were universal, including joint pain, dislocations, and hypermobility. Pain intensity was described as tiring/exhausting (93%), chronic/constant (67%), and severe/very severe (66%). Fatigue prevalence reached 77–92%. Gastrointestinal symptoms were reported in over half of studies; abdominal pain (50–79%) and nausea (50–71%) were most common. Dysautonomia prevalence was 70% in one hEDS/HSD sample, with postural tachycardia syndrome (PoTS) ranging from 8% to 64%. Fibromyalgia comorbidity ranged from 5% to 41%. Gynaecological issues included pelvic organ prolapse (p<0.01) and urinary incontinence (>70%, p<0.01). Neurological manifestations included migraines (earlier onset: 13 vs 17 years, p<0.01; more days/month: 15 vs 9, p=0.01). Obstructive sleep apnoea was more prevalent in HSD vs controls (32% vs 6%, p<0.01).

Psychological manifestations were reported in 91% of studies. Depression prevalence ranged from 22% to 69%; anxiety from 23.6% to 75%. Both were significantly more frequent than in the general population (p<0.01). Additional diagnoses included major depression (8–37%), bipolar disorder (<10%), PTSD (<5%), and ADHD (5–11%). Pain catastrophising and fear of movement (kinesiophobia) were significantly elevated (p<0.01). Suicidal behaviour was notable: 31% of one hEDS sample had attempted suicide; 60% presented with mild suicidal risk. Eating disorders (e.g., anorexia nervosa) were described in case studies, often linked to gastrointestinal symptoms.

Social impact was documented across qualitative studies. Individuals reported dropping out of education, inability to pursue careers, reduced job responsibilities, and financial dependence. Social isolation, strained relationships, and inability to participate in hobbies or daily activities were common. Negative healthcare experiences, including dismissive treatment and lack of empathy from HCPs, were frequently described.

**Clinical Implications:** The review demonstrates that EDS/HSD are multisystemic conditions requiring a multidisciplinary approach. Gastrointestinal, gynaecological, neurological, and psychiatric symptoms are underrecognised in current clinical practice. HCPs across specialties (gastroenterologists, gynaecologists, neurologists, psychiatrists, rheumatologists) should be trained to recognise these presentations. Early diagnosis is critical to prevent health deterioration and provide psychological validation. The findings support the development of rigorous clinical assessments that account for the full biopsychosocial spectrum, and emphasise the need for empathetic, patient-centred care to improve quality of life and outcomes.

PICO

PPOPULATION

Adults (≥18 years) with a clinical diagnosis of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD), including subtypes such as joint hypermobility syndrome (JHS) and benign joint hypermobility syndrome (BJHS). Sample sizes ranged from 1 to 2404; predominantly female (97% of studies).

IINTERVENTION

Not applicable — this is a scoping review mapping reported symptoms, impact, and management; no single intervention was tested.

OOUTCOME

Biopsychosocial impact including physical (MSK pain, gastrointestinal, autonomic, dermatological, gynaecological, neurological, respiratory symptoms), psychological (mood and anxiety disorders, negative affect, eating disorders, ADHD, psychosis, suicidal ideation), and social (education, employment, hobbies, social relationships, quality of life) outcomes.

STUDY TYPE

systematic_review

SPECIALTY

rheumatology

SUMMARISED BY

AI pipeline

FIDELITY CHECK

100% · A

ORIGINAL PAPER

PMC10126066

The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review

Rheumatology International

READ THE FULL PAPER

ABSTRACT

Joint hypermobility affects approximately 30% of the United Kingdom (UK) population, characterised by the ability to move joints beyond the physiological limits. Associated conditions include Ehlers-Danlos syndrome and hypermobility spectrum disorders, affecting individuals across physical, psychological and social levels detrimentally impacting their health and wellbeing. The scoping review aims to describe the known biopsychosocial impact of joint hypermobility conditions in adults over the last decade. Additional objectives include to (1) identify the types of studies that address these factors, (2) to understand how the impact of the condition is measured and managed and (3) what healthcare professionals (HCPs) are involved. The scoping review was conducted using the five-stage framework by Arksey and O’Malley. The search strategy related to two main keywords, “hypermobility” and, “biopsychosocial” across a number of electronic databases. A pilot search was conducted to determine the suitability of the databases and terms. Following the search, the data was extracted and charted, summarised and narratively reported. 32 studies met the inclusion criteria. The majority were conducted in either the UK or United States of America and case–control in design. The biopsychosocial impact was wide-ranging including, but not limited to, musculoskeletal system and dermatology, gastroenterology, mood and anxiety disorders, education and employments. This review is the first of its kind to summarise all reported symptoms and impact of joint hypermobility conditions in adults, highlighting a clear need to promote a multidisciplinary and holistic approach in raising awareness of these conditions and improving their management.

CITATION EXPORT

Natalie L. Clark, Melissa Johnson, Amar Rangan et al.. The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review. Rheumatology International. (2023). https://doi.org/10.1007/s00296-023-05298-2

AUTHORS

5 · 3 CENTRES

Natalie L. Clark, Melissa Johnson, Amar Rangan, Lucksy Kottam, Katherine Swainston

1grid.440194.c0000 0004 4647 6776South Tees Hospitals NHS Foundation Trust, Middlesbrough, UK
2grid.5685.e0000 0004 1936 9668The Mary Kinross Trust and RCS Chair, Department of Health Sciences and Hull York Medical School, University of York, York, UK
3grid.1006.70000 0001 0462 7212School of Psychology, Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK