A model to guide successful living with venous thromboembolism (VTE): Recommendations derived from the qualitative phase of a study of diagnostic Delay of VTE(DOVE)

Frost A. C., BARIŞ V. K., Sainlaire M., Chen J., Shukla M. V., Apurba M. S. A., ...Daha Fazla

Thrombosis Research, cilt.258, 2026 (SCI-Expanded, Scopus) identifier identifier

  • Yayın Türü: Makale / Tam Makale
  • Cilt numarası: 258
  • Basım Tarihi: 2026
  • Doi Numarası: 10.1016/j.thromres.2026.109585
  • Dergi Adı: Thrombosis Research
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Scopus, BIOSIS, Chemical Abstracts Core, EMBASE
  • Anahtar Kelimeler: Patient activation, Patient self-management, Patient-provider engagement, Venous thromboembolism
  • Dokuz Eylül Üniversitesi Adresli: Evet

Özet

Introduction: Delayeddiagnosis (DDx) ofVenousthromboembolism (VTE) contributes to preventable mortality. Our prior work resulted in an electronic Clinical Quality Measure (eCQM) for DiagnosticDelayofVTE(DOVE) [1] and a phenotyping algorithm to identify cases of VTE [2]. Current work incorporates voices of VTE survivors to extend that research. Methods: We interviewed 8 and surveyed 68 VTE survivors, coded and categorized text, and uploaded data into the DOVE qualitative database. Drawing on this database and patient self-management literature, notably the concepts: patient engagement [3,4] and patient activation [5,6] we developed a model to guide “Successful Living with VTE.” Results: The 76 VTE survivors provided rich descriptions of their journeys from questioning that something may be wrong to making recommendations to help others. Participants were articulate, highly educated, mostly female and white, and geographically diverse. Recommendations were defined as “Recommendations for patients, providers and health care sites targeted to achieve timely VTE diagnosis and treatment across the trajectory from first concern through follow-up care.” Patients are advised tobe assertive,obtain educationandbring a support person. Providers are advised to listen,be knowledgeableandconsider genetic testing. Conclusions: The recommendations make common sense, do not require expensive equipment or intensive training or extra staff. VTE survivors' recommendations merged with the science of patient self-management provided the model's structure. The model will inform a VTE curriculum and clinical decision support application, and guide research to promote successful living with VTE.