Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines
Rattachement africain : gb, au, us, nl, fr, ca. Niveau de preuve : code pays fourni par la source.
Le résumé fourni par la source
OBJECTIVE: To co-create expert guidelines for the management of pregnancy, birth, and postpartum recovery in the context of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). DESIGN: Scoping Review and Expert Co-creation. SETTING: United Kingdom, United States of America, Canada, France, Sweden, Luxembourg, Germany, Italy, and the Netherlands. SAMPLE: Co-creators (n = 15) included expertise from patients and clinicians from the International Consortium on the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders, facilitated by the Ehlers-Danlos Society. METHODS: A scoping review using Embase, Medline, the Cochrane Central Register of Controlled Trials and CINHAL was conducted from May 2022 to September 2023. Articles were included if they reported primary research findings in relation to childbearing with hEDS/HSD, including case reports. No language limitations were placed on our search, and our team had the ability to translate and screen articles retrieved in English, French, Spanish, Italian, Russian, Swedish, Norwegian, Dutch, Danish, German, and Portuguese. The Mixed Methods Appraisal Tool was used to assess bias and quality appraise articles selected. The co-creation of guidelines was based on descriptive evidence synthesis along with practical and clinical experience supported by patient and public involvement activities. RESULTS: Primary research studies (n = 14) and case studies (n = 21) including a total of 1,260,317 participants informed the co-creation of guidelines in four overarching categories: 1) Preconceptual: conception and screening, 2) Antenatal: risk assessment, management of miscarriage and termination of pregnancy, gastrointestinal issues and mobility, 3) Intrapartum: risk assessment, birth choices (mode of birth and intended place of birth), mobility in labor and anesthesia, and 4) Postpartum: wound healing, pelvic health, care of the newborn and infant feeding. Guidelines were also included in relation to pain management, mental health, nutrition and the common co-morbidities of postural orthostatic tachycardia syndrome, other forms of dysautonomia, and mast cell diseases. CONCLUSIONS: There is limited high quality evidence available. Individualized strategies are proposed for the management of childbearing people with hEDS/HSD throughout pregnancy, birth, and the postpartum period. A multidisciplinary approach is advised to address frequently seen issues in this population such as tissue fragility, joint hypermobility, and pain, as well as common comorbidities, including dysautonomia and mast cell diseases.
Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.
Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines
- Date Crossref
- 15/05/2024
- Éditeur
- Public Library of Science (PLoS)
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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Coventry University Research Centre for Healthcare and Communities pays non établi dans la noticeUniversité ou école supérieure
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The University of Notre Dame Australia pays non établi dans la noticeUniversité ou école supérieure
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Ehlers-Danlos Society pays non établi dans la noticeOrganisation à but non lucratif
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Main Line Health pays non établi dans la noticeÉtablissement de santé
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Erasmus University Rotterdam pays non établi dans la noticeUniversité ou école supérieure
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Lehigh Valley Hospital-Pocono pays non établi dans la noticeÉtablissement de santé
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Lehigh Valley Health Network pays non établi dans la noticeÉtablissement de santé
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Université de Strasbourg pays non établi dans la noticeUniversité ou école supérieure
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Toronto General Hospital GoodHope EDS Program pays non établi dans la noticeÉtablissement de santé
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Brown University Women and Infants Hospital pays non établi dans la noticeUniversité ou école supérieure
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Greater Baltimore Medical Center pays non établi dans la noticeÉtablissement de santé
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Nova Combian Research Institute Department of Connective Tissue pays non établi dans la noticeStructure de recherche
Research Centre for Healthcare and Communities — Coventry University, The University of Notre Dame Australia et Ehlers-Danlos Society, avec 9 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.