Evidence map›Paper›PMID 39085705›Full record

Observational studyClinical rheumatology2024

The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders-validation in adults.

E R Ewer, R De Pauw, H Kazkazk, N Ninis, P Rowe, J V Simmonds, I De Wandele

Registry-linked trialAbstract readObservational StudyValidation Study
In one paragraph

Observational study in Clinical rheumatology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07657507 (Prospective Study of Symptoms in People With and Without Joint Hypermobility), which is not on this map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT07657507 not yet recruitingnot on this mapstarted 2026, after this paper: background citation

Prospective Study of Symptoms in People With and Without Joint Hypermobility

Typeobservational_patient_registrySponsorClarkson UniversityRan2026 to 2036Enrolled100ConditionsHypermobile Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS)
3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

E R EwerUCL Great Ormond Street Institute of Child Health, London, UK. Ellen.ewer.20@ucl.ac.uk.ORCID http://orcid.org/0009-0001-0038-5612
R De PauwDepartment of Epidemiology, Sciensano, Brussels, Belgium.ORCID http://orcid.org/0000-0002-4242-9062
H KazkazkUCL Great Ormond Street Institute of Child Health, London, UK.
N NinisSt Mary's Hospital, Imperial College Healthcare NHS Trust, London, UK.
P RoweJohns Hopkins University, Baltimore, USA.
J V Simmonds *UCL Great Ormond Street Institute of Child Health, London, UK.ORCID http://orcid.org/0000-0003-0930-4193
I De Wandele *Centre for Medical Genetics, Ghent University Hospital, Ghent, Belgium.ORCID http://orcid.org/0000-0003-0377-0150

Funding

Association of Paediatric Chartered Physiotherapists APCP research bursaryEhlers-Danlos Society Spring Microgrants 2020Ehlers-Danlos Society The Ehlers-Danlos Society 2023 Mirco Grant RoundPrivate Physiotherapy Education Fund grant 388Private Physiotherapy Education Fund Scheme A2
6 · The paper itself

Abstract

introductionHypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are often accompanied by varied and complex multisystemic comorbid symptoms/conditions. The Spider questionnaire was developed to evaluate the presence and impact of eight common multisystemic comorbidities. Thirty-one questions across eight symptom domains assess neuromusculoskeletal, pain, fatigue, cardiac dysautonomia, urogenital, gastrointestinal, anxiety, and depression symptoms. This study aimed to evaluate the Spider's construct validity in adults.

methodA cross-sectional observational study was conducted over four stages. Three international patient charities aided recruitment of participants through social media and website advertisements. Adults aged 18 to 65 years, with and without HSD/hEDS, were invited to participate. Validated, frequently used comparator questionnaires were used to establish convergent validity of Spider symptom domains. A control group was recruited for known-group validity analysis. Participants answered each Spider domain and the corresponding comparator questionnaire via surveys hosted by REDCap. Anonymous data were analysed using SPSS. Convergent validity was assessed through Spearman's correlational analysis and known-group validity through Mann-Whitney U analysis.

resultsA total of 11,151 participants were recruited across the four stages. Statistically significant, moderate-to-strong correlations were found between all Spider domains and their comparators (p < 0.001, r = 0.63 to 0.80). Known-group validity analysis showed statistically significant differences (p < 0.001) between the hypermobile and control groups in all eight domains.

conclusionsConvergent and known-group validity of the Spider was established with adults. These results suggest the Spider can measure the presence and impact of multisystemic comorbid symptoms/conditions in adults with HSD/hEDS, providing a tool which guides multidisciplinary management. Key Points • The Spider questionnaire is a novel tool assessing the presence and impact of the multisystemic comorbid symptoms/conditions associated with HSD/hEDS. • Convergent and known-group validity of the Spider questionnaire was established in adults aged 18 to 65. • This tool provides a quick and easy method to visualise the symptom profile of those with HSD/hEDS to guide symptom management.

Indexed as

Joint InstabilityAdolescentAdultAgedAnxietyComorbidityCross-Sectional StudiesDepressionEhlers-Danlos SyndromeFatigueFemaleHumansMaleMiddle AgedPrimary DysautonomiasReproducibility of ResultsEhlers-Danlos syndromeHypermobilityMultisystemic comorbiditiesScreening toolSpider questionnaire

Identifiers

PMID39085705
PMCPMC11330398

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.