PLoS ONE (Jan 2020)

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

  • Sumedha Arya,
  • Pamela Wilton,
  • David Page,
  • Laurence Boma-Fischer,
  • Georgina Floros,
  • Katie N Dainty,
  • Rochelle Winikoff,
  • Michelle Sholzberg

DOI
https://doi.org/10.1371/journal.pone.0229099
Journal volume & issue
Vol. 15, no. 2
p. e0229099

Abstract

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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.