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The lived experience with pulmonary embolism: A qualitative study using focus groups.

Inge Kirchberger1, Sarah Ruile2, Jakob Linseisen1

  • 1Chair of Epidemiology at UNIKA-T, Ludwig-Maximilians-Universität München, Augsburg, Germany; Independent Research Group Clinical Epidemiology, Helmholtz Zentrum München, German Research Center for Environmental Health, Neuherberg, Germany.

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Patients with pulmonary embolism (PE) experience significant physical and mental health challenges, often feeling unsupported by the healthcare system. This qualitative study highlights the need for improved patient care and further research into PE patient experiences.

Keywords:
Delivery of health careMental healthPulmonary embolismQualitative study

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Area of Science:

  • Cardiology
  • Pulmonary Medicine
  • Qualitative Health Research

Background:

  • Pulmonary embolism (PE) is a leading cause of cardiovascular death.
  • Limited understanding exists regarding the lived experiences of PE patients.
  • This study addresses the gap in knowledge concerning patient perspectives on PE.

Purpose of the Study:

  • To explore the multifaceted experiences of patients diagnosed with pulmonary embolism.
  • To identify key themes related to symptoms, well-being, social life, and healthcare interactions in PE survivors.

Main Methods:

  • Qualitative study employing focus group methodology.
  • Maximum variation sampling strategy used for participant selection.
  • Data analyzed using the constant comparative method after verbatim transcription of discussions.

Main Results:

  • Identified themes include dyspnea, pain, loss of physical fitness, depression, fear, and exhaustion.
  • Patients reported varied social support, mixed experiences with anticoagulants, and concerns about diagnosis timeliness.
  • Significant findings include feelings of abandonment by healthcare providers and an unsupportive healthcare system.

Conclusions:

  • Pulmonary embolism is associated with substantial mental health impacts.
  • The current healthcare system is perceived as inadequate by many PE patients.
  • Further large-scale quantitative research is recommended to quantify these patient-reported issues.