Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome.
Identifieur interne : 000130 ( Main/Exploration ); précédent : 000129; suivant : 000131Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome.
Auteurs : Larissa Kalisch [Royaume-Uni] ; Claude Hamonet [France] ; Caroline Bourdon [France] ; Lucile Montalescot [France] ; Cécile De Cazotte [France] ; Carolina Baeza-Velasco [France]Source :
- Disability and rehabilitation [ 1464-5165 ] ; 2020.
Abstract
Aim: Among the Ehlers-Danlos syndromes, the hypermobile subtype (hEDS) is the most common. The variety, accumulation and duration of the painful symptoms make hEDS a chronic and highly disabling condition. Identifying drivers of pain and mobility disability in hEDS is necessary to provide adapted prevention and intervention programs.Methods: A cross-sectional sample of 75 adults with hEDS according to Villefranche criteria (67 women; 36 years, SD = 11.2) responded to self-assessment questionnaires regarding psychological (negative thoughts and emotions), health (pain, fatigue, diagnostic delay, body mass index, and mobility disability) and socio-demographic variables.Results: Forty-three percent of the participants suffer from severe pain, and two thirds suffer from a high level of mobility disability. Multivariate analyses show that delay of diagnosis, being professionally active and thoughts of helplessness are variables that increase the likelihood of severe pain, whereas age, fatigue, and body mass index predict mobility disability.Conclusion: These results confirm previous research concerning the high disease burden observed in hEDS patients, and highlight the importance of multidisciplinary management that includes nutritional and psychological advice to address this pathology. Increasing awareness of the clinical aspects of hEDS among physicians is necessary to reduce diagnostic delay and minimize negatives outcomes.Implications for RehabilitationA high proportion of patients with hypermobile Ehlers-Danlos syndrome suffer from severe pain (>42%) and a high level of mobility disability (>65%).Different psychosocial and health variables predict pain and mobility disability in patients with hypermobile Ehlers-Danlos syndrome.Awareness concerning the clinical picture of hypermobile Ehlers-Danlos syndrome among health care professionals is necessary to reduce diagnosis delay and the burden of the disease.
DOI: 10.1080/09638288.2019.1608595
PubMed: 31060411
Affiliations:
- France, Royaume-Uni
- Languedoc-Roussillon, Occitanie (région administrative), Île-de-France
- Boulogne-Billancourt, Créteil, Montpellier, Évry (Essonne)
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first="Claude" last="Hamonet">Claude Hamonet</name><affiliation wicri:level="3"><nlm:affiliation>Faculty of Medecine, University Paris-Est Créteil, Créteil, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Faculty of Medecine, University Paris-Est Créteil, Créteil</wicri:regionArea><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Créteil</settlement></placeName></affiliation></author><author><name sortKey="Bourdon, Caroline" sort="Bourdon, Caroline" uniqKey="Bourdon C" first="Caroline" last="Bourdon">Caroline Bourdon</name><affiliation wicri:level="3"><nlm:affiliation>Functional Rehabilitation Center, Evry Hospital, Evry, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Functional Rehabilitation Center, Evry Hospital, Evry</wicri:regionArea><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Évry (Essonne)</settlement></placeName></affiliation></author><author><name sortKey="Montalescot, Lucile" sort="Montalescot, Lucile" uniqKey="Montalescot L" first="Lucile" last="Montalescot">Lucile Montalescot</name><affiliation wicri:level="3"><nlm:affiliation>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt</wicri:regionArea><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Boulogne-Billancourt</settlement></placeName></affiliation></author><author><name sortKey="De Cazotte, Cecile" sort="De Cazotte, Cecile" uniqKey="De Cazotte C" first="Cécile" last="De Cazotte">Cécile De Cazotte</name><affiliation wicri:level="3"><nlm:affiliation>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt</wicri:regionArea><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Boulogne-Billancourt</settlement></placeName></affiliation></author><author><name sortKey="Baeza Velasco, Carolina" sort="Baeza Velasco, Carolina" uniqKey="Baeza Velasco C" first="Carolina" last="Baeza-Velasco">Carolina Baeza-Velasco</name><affiliation wicri:level="3"><nlm:affiliation>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt</wicri:regionArea><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Boulogne-Billancourt</settlement></placeName></affiliation><affiliation wicri:level="3"><nlm:affiliation>Department of Emergency Psychiatry and Acute Care, CHU Montpellier, Montpellier, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Department of Emergency Psychiatry and Acute Care, CHU Montpellier, Montpellier</wicri:regionArea><placeName><region type="region">Occitanie (région administrative)</region><region type="old region">Languedoc-Roussillon</region><settlement type="city">Montpellier</settlement></placeName></affiliation></author></analytic><series><title level="j">Disability and rehabilitation</title><idno type="eISSN">1464-5165</idno><imprint><date when="2020" type="published">2020</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><b>Aim:</b> Among the Ehlers-Danlos syndromes, the hypermobile subtype (hEDS) is the most common. The variety, accumulation and duration of the painful symptoms make hEDS a chronic and highly disabling condition. Identifying drivers of pain and mobility disability in hEDS is necessary to provide adapted prevention and intervention programs.<b>Methods:</b> A cross-sectional sample of 75 adults with hEDS according to Villefranche criteria (67 women; 36 years, SD = 11.2) responded to self-assessment questionnaires regarding psychological (negative thoughts and emotions), health (pain, fatigue, diagnostic delay, body mass index, and mobility disability) and socio-demographic variables.<b>Results:</b> Forty-three percent of the participants suffer from severe pain, and two thirds suffer from a high level of mobility disability. Multivariate analyses show that delay of diagnosis, being professionally active and thoughts of helplessness are variables that increase the likelihood of severe pain, whereas age, fatigue, and body mass index predict mobility disability.<b>Conclusion:</b> These results confirm previous research concerning the high disease burden observed in hEDS patients, and highlight the importance of multidisciplinary management that includes nutritional and psychological advice to address this pathology. Increasing awareness of the clinical aspects of hEDS among physicians is necessary to reduce diagnostic delay and minimize negatives outcomes.Implications for RehabilitationA high proportion of patients with hypermobile Ehlers-Danlos syndrome suffer from severe pain (>42%) and a high level of mobility disability (>65%).Different psychosocial and health variables predict pain and mobility disability in patients with hypermobile Ehlers-Danlos syndrome.Awareness concerning the clinical picture of hypermobile Ehlers-Danlos syndrome among health care professionals is necessary to reduce diagnosis delay and the burden of the disease.</div></front></TEI><pubmed><MedlineCitation Status="In-Data-Review" Owner="NLM"><PMID Version="1">31060411</PMID><DateRevised><Year>2020</Year><Month>11</Month><Day>12</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1464-5165</ISSN><JournalIssue CitedMedium="Internet"><Volume>42</Volume><Issue>25</Issue><PubDate><Year>2020</Year><Month>Dec</Month></PubDate></JournalIssue><Title>Disability and rehabilitation</Title><ISOAbbreviation>Disabil Rehabil</ISOAbbreviation></Journal><ArticleTitle>Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome.</ArticleTitle><Pagination><MedlinePgn>3679-3686</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1080/09638288.2019.1608595</ELocationID><Abstract><AbstractText><b>Aim:</b> Among the Ehlers-Danlos syndromes, the hypermobile subtype (hEDS) is the most common. The variety, accumulation and duration of the painful symptoms make hEDS a chronic and highly disabling condition. Identifying drivers of pain and mobility disability in hEDS is necessary to provide adapted prevention and intervention programs.<b>Methods:</b> A cross-sectional sample of 75 adults with hEDS according to Villefranche criteria (67 women; 36 years, SD = 11.2) responded to self-assessment questionnaires regarding psychological (negative thoughts and emotions), health (pain, fatigue, diagnostic delay, body mass index, and mobility disability) and socio-demographic variables.<b>Results:</b> Forty-three percent of the participants suffer from severe pain, and two thirds suffer from a high level of mobility disability. Multivariate analyses show that delay of diagnosis, being professionally active and thoughts of helplessness are variables that increase the likelihood of severe pain, whereas age, fatigue, and body mass index predict mobility disability.<b>Conclusion:</b> These results confirm previous research concerning the high disease burden observed in hEDS patients, and highlight the importance of multidisciplinary management that includes nutritional and psychological advice to address this pathology. Increasing awareness of the clinical aspects of hEDS among physicians is necessary to reduce diagnostic delay and minimize negatives outcomes.Implications for RehabilitationA high proportion of patients with hypermobile Ehlers-Danlos syndrome suffer from severe pain (>42%) and a high level of mobility disability (>65%).Different psychosocial and health variables predict pain and mobility disability in patients with hypermobile Ehlers-Danlos syndrome.Awareness concerning the clinical picture of hypermobile Ehlers-Danlos syndrome among health care professionals is necessary to reduce diagnosis delay and the burden of the disease.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Kalisch</LastName><ForeName>Larissa</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>Department of Psychology, Anglia Ruskin University, Cambridge, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hamonet</LastName><ForeName>Claude</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Faculty of Medecine, University Paris-Est Créteil, Créteil, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Bourdon</LastName><ForeName>Caroline</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Functional Rehabilitation Center, Evry Hospital, Evry, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Montalescot</LastName><ForeName>Lucile</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>de Cazotte</LastName><ForeName>Cécile</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Baeza-Velasco</LastName><ForeName>Carolina</ForeName><Initials>C</Initials><Identifier Source="ORCID">http://orcid.org/0000-0002-3279-8366</Identifier><AffiliationInfo><Affiliation>Laboratory of Psychopathology and Health Processes (EA 4057), University Paris Descartes-Sorbonne Paris Cité, Boulogne-Billancourt, France.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Department of Emergency Psychiatry and Acute Care, CHU Montpellier, Montpellier, France.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2019</Year><Month>05</Month><Day>07</Day></ArticleDate></Article><MedlineJournalInfo><Country>England</Country><MedlineTA>Disabil Rehabil</MedlineTA><NlmUniqueID>9207179</NlmUniqueID><ISSNLinking>0963-8288</ISSNLinking></MedlineJournalInfo><CitationSubset>IM</CitationSubset><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">Ehlers-Danlos syndrome</Keyword><Keyword MajorTopicYN="N">delayed diagnosis</Keyword><Keyword MajorTopicYN="N">fatigue</Keyword><Keyword MajorTopicYN="N">joint instability</Keyword><Keyword MajorTopicYN="N">mobility limitation</Keyword><Keyword MajorTopicYN="N">pain</Keyword></KeywordList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="pubmed"><Year>2019</Year><Month>5</Month><Day>8</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2019</Year><Month>5</Month><Day>8</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2019</Year><Month>5</Month><Day>8</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>ppublish</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">31060411</ArticleId><ArticleId IdType="doi">10.1080/09638288.2019.1608595</ArticleId></ArticleIdList></PubmedData></pubmed><affiliations><list><country><li>France</li><li>Royaume-Uni</li></country><region><li>Languedoc-Roussillon</li><li>Occitanie (région administrative)</li><li>Île-de-France</li></region><settlement><li>Boulogne-Billancourt</li><li>Créteil</li><li>Montpellier</li><li>Évry (Essonne)</li></settlement></list><tree><country name="Royaume-Uni"><noRegion><name sortKey="Kalisch, Larissa" sort="Kalisch, Larissa" uniqKey="Kalisch L" first="Larissa" last="Kalisch">Larissa Kalisch</name></noRegion></country><country name="France"><region name="Île-de-France"><name sortKey="Hamonet, Claude" sort="Hamonet, Claude" uniqKey="Hamonet C" first="Claude" last="Hamonet">Claude Hamonet</name></region><name sortKey="Baeza Velasco, Carolina" sort="Baeza Velasco, Carolina" uniqKey="Baeza Velasco C" first="Carolina" last="Baeza-Velasco">Carolina Baeza-Velasco</name><name sortKey="Baeza Velasco, Carolina" sort="Baeza Velasco, Carolina" uniqKey="Baeza Velasco C" first="Carolina" last="Baeza-Velasco">Carolina Baeza-Velasco</name><name sortKey="Bourdon, Caroline" sort="Bourdon, Caroline" uniqKey="Bourdon C" first="Caroline" last="Bourdon">Caroline Bourdon</name><name sortKey="De Cazotte, Cecile" sort="De Cazotte, Cecile" uniqKey="De Cazotte C" first="Cécile" last="De Cazotte">Cécile De Cazotte</name><name sortKey="Montalescot, Lucile" sort="Montalescot, Lucile" uniqKey="Montalescot L" first="Lucile" last="Montalescot">Lucile Montalescot</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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