Patient- and Health-Care-Provider-Reported Outcomes to Consider in Research on Pregnancy-Associated Venous Thromboembolism

Thromb Haemost. 2021 Sep;121(9):1228-1236. doi: 10.1055/s-0041-1722855. Epub 2021 Feb 10.

Abstract

Background: Venous thromboembolism (VTE) in pregnancy can have numerous adverse impacts on patients and health care systems. Ongoing research aimed at improving maternal and fetal/neonatal outcomes is hampered by the lack of patient perspective in determining which outcomes are considered important to assess the effectiveness of interventions.

Objectives: The objective of this study was to elicit outcomes from those who experienced or were at risk for pregnancy-associated VTE (health service users, HSUs) and health care providers (HCPs) involved in their care.

Methods: Canadian HSUs and HCPs were recruited using convenience and purposive sampling, respectively. Individual, semistructured interviews aimed specifically at eliciting pregnancy-related outcomes were conducted until data saturation was attained. Interviews were audio-recorded and transcribed verbatim. Written transcripts were de-identified and interpretatively analyzed in duplicate to obtain outcomes related to participant experiences. Outcomes were grouped based on a taxonomy developed for medical research and compared between and across interviews with patients and HCPs, and with those obtained through a systematic review of the published literature.

Results and conclusion: We interviewed 10 HSUs and eight HCPs and elicited 52 outcomes, 21 of which have not been reported in the literature. Although the majority of elicited outcomes were in the clinical/physiological core outcome area, both HSUs and HCPs highlighted the importance of outcomes related to functioning/life impact and general wellbeing of mother and baby. These outcomes representing the perspectives of HSUs and HCPs should be considered while conducting trials on pregnancy-associated VTE.

Publication types

  • Systematic Review

MeSH terms

  • Adult
  • Attitude of Health Personnel
  • Biomedical Research*
  • Canada
  • Female
  • Health Personnel*
  • Humans
  • Interviews as Topic
  • Middle Aged
  • Patient Participation
  • Patient Reported Outcome Measures*
  • Pregnancy
  • Pregnancy Complications, Cardiovascular / physiopathology
  • Pregnancy Complications, Cardiovascular / psychology
  • Pregnancy Complications, Cardiovascular / therapy*
  • Research Design*
  • Venous Thromboembolism / physiopathology
  • Venous Thromboembolism / psychology
  • Venous Thromboembolism / therapy*