Healthcare provider perspectives on inequities in access to care for patients with inherited bleeding disorders

PLoS One. 2020 Feb 20;15(2):e0229099. doi: 10.1371/journal.pone.0229099. eCollection 2020.

Abstract

Introduction: The ways in which social determinants of health affect patients with inherited bleeding disorders remains unclear. The objective of this study was to understand healthcare provider perspectives regarding access to care and diagnostic delay amongst this patient population.

Methods: A healthcare provider survey comprising 24 questions was developed, tested, and subsequently disseminated online with recruitment to all members of The Association of Hemophilia Clinic Directors of Canada (N = 73), members of the Canadian Association of Nurses in Hemophilia Care (N = 40) and members of the Canadian Physiotherapists in Hemophilia Care (N = 44).

Results: There were 70 respondents in total, for a total response rate of 45%. HCPs felt that there were diagnostic delays for patients with mild symptomatology (71%, N = 50), women presenting with abnormal uterine bleeding as their only or primary symptom (59%, N = 41), and patients living in rural Canada (50%, N = 35). Fewer respondents felt that factors such as socioeconomic status (46%, N = 32) or race (21%, N = 15) influenced access to care, particularly as compared to the influence of rural location (77%, N = 54).

Discussion: We found that healthcare providers identified patients with mild symptomatology, isolated abnormal uterine bleeding, and residence in rural locations as populations at risk for inequitable access to care. These factors warrant further study, and will be investigated further by our group using our nation-wide patient survey and ongoing in-depth qualitative patient interviews.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Canada
  • Delayed Diagnosis / statistics & numerical data
  • Female
  • Health Care Surveys / statistics & numerical data*
  • Health Personnel / statistics & numerical data*
  • Health Services Accessibility / statistics & numerical data*
  • Healthcare Disparities / statistics & numerical data*
  • Hemophilia A / complications
  • Hemophilia A / diagnosis
  • Hemophilia A / therapy*
  • Humans
  • Quality of Life
  • Social Determinants of Health / statistics & numerical data
  • Time Factors

Grants and funding

SA received support for this research through the American Society of Hematology (ASH) HONORS award and the University of Toronto Postgraduate Medical Education (PGME) research award.