The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders—validation in adults
Introduction Hypermobility 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 comorbidi...
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| Veröffentlicht in: | Clinical rheumatology 2024-09, Vol.43 (9), p.3005-3017 |
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| creator | Ewer, E. R. De Pauw, R. Kazkazk, H. Ninis, N. Rowe, P. Simmonds, J. V. De Wandele, I. |
| description | Introduction
Hypermobility 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.
Method
A 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.
Results
A 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
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| doi_str_mv | 10.1007/s10067-024-07071-7 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_11330398</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>3086955194</sourcerecordid><originalsourceid>FETCH-LOGICAL-c356t-3b76be78c9d9bfb57e22f8633323789da1946eea7f22083be206a92d002f2ed13</originalsourceid><addsrcrecordid>eNp9kc1u1TAQhS0EopfCC7BAlth0gcE_SRyzQVUFFKkSC8racuJJrysnDrZzUXbseAGekCfB7W3Lz4KNvZhvzsyZg9BTRl8ySuWrVN5GEsorQiWVjMh7aMMqURGlKnUfbaiUlAim2gP0KKVLSilvFXuIDoSibS1pvUHfz7eAP83OQnyNDd65tBj_Ao-Lzy6tKcPoepzWcc5hxG6cTZ_xlwVSdmGajIuAhxDxDGH2gL-6vMXbdYY4hs55l1cSwZsMFluXQixD0s9vP3bGO2uuFLCbsLFlVnqMHgzGJ3hy8x-iz-_enp-ckrOP7z-cHJ-RXtRNJqKTTQey7ZVV3dDVEjgf2kYIwYVslTVMVQ2AkQPntBUdcNoYxW1xPnCwTByiN3vdeelGsD1MORqv5-hGE1cdjNN_Vya31RdhpxkTggrVFoWjG4UYri-hR5d68N5MEJakBW0bVddlkYI-_we9DEucir9CKaGqmtWiUHxP9TGkFGG424ZRfRW03getS9D6OmgtS9OzP33ctdwmWwCxB1IpTRcQf8_-j-wvImm4qw</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>3093945153</pqid></control><display><type>article</type><title>The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders—validation in adults</title><source>MEDLINE</source><source>SpringerLink Journals - AutoHoldings</source><creator>Ewer, E. R. ; De Pauw, R. ; Kazkazk, H. ; Ninis, N. ; Rowe, P. ; Simmonds, J. V. ; De Wandele, I.</creator><creatorcontrib>Ewer, E. R. ; De Pauw, R. ; Kazkazk, H. ; Ninis, N. ; Rowe, P. ; Simmonds, J. V. ; De Wandele, I.</creatorcontrib><description>Introduction
Hypermobility 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.
Method
A 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.
Results
A 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.
Conclusions
Convergent 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.</description><identifier>ISSN: 0770-3198</identifier><identifier>ISSN: 1434-9949</identifier><identifier>EISSN: 1434-9949</identifier><identifier>DOI: 10.1007/s10067-024-07071-7</identifier><identifier>PMID: 39085705</identifier><language>eng</language><publisher>Cham: Springer International Publishing</publisher><subject>Adolescent ; Adult ; Aged ; Anxiety - diagnosis ; Comorbidity ; Cross-Sectional Studies ; Depression - diagnosis ; Dysautonomia ; Ehlers-Danlos syndrome ; Ehlers-Danlos Syndrome - complications ; Ehlers-Danlos Syndrome - diagnosis ; Fatigue - diagnosis ; Female ; Humans ; Joint Instability - diagnosis ; Joint Instability - epidemiology ; Male ; Medicine ; Medicine & Public Health ; Middle Aged ; Original ; Original Article ; Primary Dysautonomias - diagnosis ; Questionnaires ; Reproducibility of Results ; Rheumatology ; Statistical analysis ; Surveys and Questionnaires ; Symptom management ; Validity ; Young Adult</subject><ispartof>Clinical rheumatology, 2024-09, Vol.43 (9), p.3005-3017</ispartof><rights>The Author(s) 2024</rights><rights>2024. The Author(s).</rights><rights>The Author(s) 2024. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>The Author(s) 2024 2024</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c356t-3b76be78c9d9bfb57e22f8633323789da1946eea7f22083be206a92d002f2ed13</cites><orcidid>0009-0001-0038-5612 ; 0000-0002-4242-9062 ; 0000-0003-0377-0150 ; 0000-0003-0930-4193</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10067-024-07071-7$$EPDF$$P50$$Gspringer$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10067-024-07071-7$$EHTML$$P50$$Gspringer$$Hfree_for_read</linktohtml><link.rule.ids>230,314,780,784,885,27923,27924,41487,42556,51318</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39085705$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Ewer, E. R.</creatorcontrib><creatorcontrib>De Pauw, R.</creatorcontrib><creatorcontrib>Kazkazk, H.</creatorcontrib><creatorcontrib>Ninis, N.</creatorcontrib><creatorcontrib>Rowe, P.</creatorcontrib><creatorcontrib>Simmonds, J. V.</creatorcontrib><creatorcontrib>De Wandele, I.</creatorcontrib><title>The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders—validation in adults</title><title>Clinical rheumatology</title><addtitle>Clin Rheumatol</addtitle><addtitle>Clin Rheumatol</addtitle><description>Introduction
Hypermobility 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.
Method
A 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.
Results
A 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.
Conclusions
Convergent 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.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Aged</subject><subject>Anxiety - diagnosis</subject><subject>Comorbidity</subject><subject>Cross-Sectional Studies</subject><subject>Depression - diagnosis</subject><subject>Dysautonomia</subject><subject>Ehlers-Danlos syndrome</subject><subject>Ehlers-Danlos Syndrome - complications</subject><subject>Ehlers-Danlos Syndrome - diagnosis</subject><subject>Fatigue - diagnosis</subject><subject>Female</subject><subject>Humans</subject><subject>Joint Instability - diagnosis</subject><subject>Joint Instability - epidemiology</subject><subject>Male</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Middle Aged</subject><subject>Original</subject><subject>Original Article</subject><subject>Primary Dysautonomias - diagnosis</subject><subject>Questionnaires</subject><subject>Reproducibility of Results</subject><subject>Rheumatology</subject><subject>Statistical analysis</subject><subject>Surveys and Questionnaires</subject><subject>Symptom management</subject><subject>Validity</subject><subject>Young Adult</subject><issn>0770-3198</issn><issn>1434-9949</issn><issn>1434-9949</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>C6C</sourceid><sourceid>EIF</sourceid><recordid>eNp9kc1u1TAQhS0EopfCC7BAlth0gcE_SRyzQVUFFKkSC8racuJJrysnDrZzUXbseAGekCfB7W3Lz4KNvZhvzsyZg9BTRl8ySuWrVN5GEsorQiWVjMh7aMMqURGlKnUfbaiUlAim2gP0KKVLSilvFXuIDoSibS1pvUHfz7eAP83OQnyNDd65tBj_Ao-Lzy6tKcPoepzWcc5hxG6cTZ_xlwVSdmGajIuAhxDxDGH2gL-6vMXbdYY4hs55l1cSwZsMFluXQixD0s9vP3bGO2uuFLCbsLFlVnqMHgzGJ3hy8x-iz-_enp-ckrOP7z-cHJ-RXtRNJqKTTQey7ZVV3dDVEjgf2kYIwYVslTVMVQ2AkQPntBUdcNoYxW1xPnCwTByiN3vdeelGsD1MORqv5-hGE1cdjNN_Vya31RdhpxkTggrVFoWjG4UYri-hR5d68N5MEJakBW0bVddlkYI-_we9DEucir9CKaGqmtWiUHxP9TGkFGG424ZRfRW03getS9D6OmgtS9OzP33ctdwmWwCxB1IpTRcQf8_-j-wvImm4qw</recordid><startdate>20240901</startdate><enddate>20240901</enddate><creator>Ewer, E. R.</creator><creator>De Pauw, R.</creator><creator>Kazkazk, H.</creator><creator>Ninis, N.</creator><creator>Rowe, P.</creator><creator>Simmonds, J. V.</creator><creator>De Wandele, I.</creator><general>Springer International Publishing</general><general>Springer Nature B.V</general><scope>C6C</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7T5</scope><scope>H94</scope><scope>K9.</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0009-0001-0038-5612</orcidid><orcidid>https://orcid.org/0000-0002-4242-9062</orcidid><orcidid>https://orcid.org/0000-0003-0377-0150</orcidid><orcidid>https://orcid.org/0000-0003-0930-4193</orcidid></search><sort><creationdate>20240901</creationdate><title>The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders—validation in adults</title><author>Ewer, E. R. ; De Pauw, R. ; Kazkazk, H. ; Ninis, N. ; Rowe, P. ; Simmonds, J. V. ; De Wandele, I.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c356t-3b76be78c9d9bfb57e22f8633323789da1946eea7f22083be206a92d002f2ed13</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Aged</topic><topic>Anxiety - diagnosis</topic><topic>Comorbidity</topic><topic>Cross-Sectional Studies</topic><topic>Depression - diagnosis</topic><topic>Dysautonomia</topic><topic>Ehlers-Danlos syndrome</topic><topic>Ehlers-Danlos Syndrome - complications</topic><topic>Ehlers-Danlos Syndrome - diagnosis</topic><topic>Fatigue - diagnosis</topic><topic>Female</topic><topic>Humans</topic><topic>Joint Instability - diagnosis</topic><topic>Joint Instability - epidemiology</topic><topic>Male</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Middle Aged</topic><topic>Original</topic><topic>Original Article</topic><topic>Primary Dysautonomias - diagnosis</topic><topic>Questionnaires</topic><topic>Reproducibility of Results</topic><topic>Rheumatology</topic><topic>Statistical analysis</topic><topic>Surveys and Questionnaires</topic><topic>Symptom management</topic><topic>Validity</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Ewer, E. R.</creatorcontrib><creatorcontrib>De Pauw, R.</creatorcontrib><creatorcontrib>Kazkazk, H.</creatorcontrib><creatorcontrib>Ninis, N.</creatorcontrib><creatorcontrib>Rowe, P.</creatorcontrib><creatorcontrib>Simmonds, J. V.</creatorcontrib><creatorcontrib>De Wandele, I.</creatorcontrib><collection>Springer Nature OA Free Journals</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Immunology Abstracts</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Clinical rheumatology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Ewer, E. R.</au><au>De Pauw, R.</au><au>Kazkazk, H.</au><au>Ninis, N.</au><au>Rowe, P.</au><au>Simmonds, J. V.</au><au>De Wandele, I.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders—validation in adults</atitle><jtitle>Clinical rheumatology</jtitle><stitle>Clin Rheumatol</stitle><addtitle>Clin Rheumatol</addtitle><date>2024-09-01</date><risdate>2024</risdate><volume>43</volume><issue>9</issue><spage>3005</spage><epage>3017</epage><pages>3005-3017</pages><issn>0770-3198</issn><issn>1434-9949</issn><eissn>1434-9949</eissn><abstract>Introduction
Hypermobility 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.
Method
A 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.
Results
A 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.
Conclusions
Convergent 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.</abstract><cop>Cham</cop><pub>Springer International Publishing</pub><pmid>39085705</pmid><doi>10.1007/s10067-024-07071-7</doi><tpages>13</tpages><orcidid>https://orcid.org/0009-0001-0038-5612</orcidid><orcidid>https://orcid.org/0000-0002-4242-9062</orcidid><orcidid>https://orcid.org/0000-0003-0377-0150</orcidid><orcidid>https://orcid.org/0000-0003-0930-4193</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Clinical rheumatology, 2024-09, Vol.43 (9), p.3005-3017 |
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| language | eng |
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| source | MEDLINE; SpringerLink Journals - AutoHoldings |
| subjects | Adolescent Adult Aged Anxiety - diagnosis Comorbidity Cross-Sectional Studies Depression - diagnosis Dysautonomia Ehlers-Danlos syndrome Ehlers-Danlos Syndrome - complications Ehlers-Danlos Syndrome - diagnosis Fatigue - diagnosis Female Humans Joint Instability - diagnosis Joint Instability - epidemiology Male Medicine Medicine & Public Health Middle Aged Original Original Article Primary Dysautonomias - diagnosis Questionnaires Reproducibility of Results Rheumatology Statistical analysis Surveys and Questionnaires Symptom management Validity Young Adult |
| title | The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders—validation in adults |
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