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Patients' perspectives on how to improve endometriosis care: A large qualitative study within the ComPaRe-Endometriosis e-cohort

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  • معلومة اضافية
    • Contributors:
      Centre de recherche en épidémiologie et santé des populations (CESP); Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay; Hôpital Hôtel-Dieu Paris; Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP); Université de Versailles Saint-Quentin-en-Yvelines (UVSQ); ENDOmind France Antony; Centre for Research in Epidemiology and Statistics; Conservatoire National des Arts et Métiers CNAM (CNAM); HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE); Mailman School of Public Health Columbia University New-York; APHP; Crédit Agricole Ile-de-France Mécénat; EndoFrance; EndoMind; French Ministry of Research; Hôpitaux de Paris; La Belle et L'endo; Les Chroniques Endométriques; Assistance Publique - Hôpitaux de Paris, AP-HP; Université de Paris
    • بيانات النشر:
      HAL CCSD
      Mary Ann Liebert
    • الموضوع:
      2023
    • نبذة مختصرة :
      International audience ; Endometriosis is a chronic gynecological condition that affects about 10% of women of reproductive age. Despite its prevalence, diagnosis is often delayed, misdiagnosis is common, and treatment options are poor. This study aimed at capturing ideas to improve endometriosis care from the patients' perspectives. Materials and Methods: We analyzed cross-sectional data from 1,000 adult patients in ComPaRe-Endometriosis (a French prospective e-cohort focused on endometriosis) who answered to the open-ended question: "If you had a magic wand, what would you change about your health care?". The free-text responses were analyzed by qualitative thematic analysis using an inductive approach. Results: Patients had a mean age of 34.1 years (standard deviation = 8.1); 56% and 42% had stage IV disease or deep endometriosis, respectively. They elicited 2,487 ideas to improve the management of endometriosis, which were categorized into 61 areas of improvement, further grouped into 14 themes. The top five areas of improvement were mentioned by >10% of the patients and were to (1) train caregivers to develop their knowledge on the disease, (2) provide better management of daily pain and pain attacks, (3) take patient-reported symptoms seriously, (4) standardize diagnostic processes to improve early detection, and (5) have caregivers listen more to the patients. Conclusions: We identified 61 areas for improvement in endometriosis care. These results reflect patients' expectations in terms of management of their disease and will be useful to design a better global care for endometriosis from the patients' perspectives.
    • Relation:
      info:eu-repo/semantics/altIdentifier/pmid/36656556; hal-04233267; https://hal.science/hal-04233267; https://hal.science/hal-04233267/document; https://hal.science/hal-04233267/file/Patients%27%20Perspectives%20Manuscript.pdf; PUBMED: 36656556; WOS: 000915446800001
    • الرقم المعرف:
      10.1089/jwh.2022.0323
    • Rights:
      http://creativecommons.org/licenses/by/ ; info:eu-repo/semantics/OpenAccess
    • الرقم المعرف:
      edsbas.E0F80E8