Barriers to Care Amongst Patients with Inherited Bleeding Disorders: Results from Two Nation-Wide Canadian Surveys
Authors: Arya Sumedha , Wilton Pamela , Page David , Boma-Fischer Laurence , Floros Georgina , Dainty Katie , Winikoff Rochelle , Sholzberg Michelle 
Published: November 2019

Introduction: The literature surrounding inequity in healthcare is robust, with factors such as socioeconomic status (SES), race, immigration status, and geographic access being extensively documented as influencers of both healthcare access and healthcare outcomes. However, the ways in which social determinants of health (SDOH) affect patients with inherited bleeding disorders remains unclear. To the best of our knowledge, no study has specifically examined for health inequities or barriers to care amongst this patient population. The objective of this study was to survey Canadian patients and healthcare providers (HCPs) regarding their perceptions around access to care and diagnostic delay.

Methods: A 40 question bilingual patient survey and a 24 question HCP survey were developed and tested with experienced hematologists, a mixed-methodology research expert, and patient advocates from the Canadian Hemophilia Society (CHS). Surveys were launched online on January 1st, 2019. The HCP survey remained live for 2 months, and the patient survey for 6 months. Patient recruitment occurred through e-mails, newsletters and social media announcements through the CHS, a nation-wide patient advocacy group comprised of patients, caregivers, and supporters (N=2261). HCP recruitment occurred via e-mail to all members of The Association of Hemophilia Clinic Directors of Canada (N=73), the Canadian Association of Nurses in Hemophilia Care (N=40) and the Canadian Physiotherapists in Hemophilia Care (N=44).

Results: There were 46 patient respondents (exact response rate unknown) and 70 HCP respondents (response rate of 45%). Patient ages ranged from 18-75, with 56% (N=26) of respondents being women. Diagnoses amongst patients included von Willebrand disease (VWD) (29%, N=12), hemophilia A (32%, N=13), hemophilia B (10%, N=4), hemophilia A carrier (10%, N=4), disorders of platelet function (10%, N=4), factor 7 deficiency (5%, N=2), and bleeding disorders not yet diagnosed (5%, N=2). All patient respondents described being symptomatic, with easy bruising (90%, N=38), bleeding from gums (67%, N=28), bleeding into joints (57%, N=24), and hospitalization due to bleeding being most common (60%, N=25). The majority of patients (90%, N=38) described symptoms of bleeding prior to age 18; however, 25% (N=10) estimated it took over 10 years to reach a correct diagnosis. Female gender, distance from a hemophilia treatment centre (HTC), and being sent home from the emergency room without a treatment plan or referral were identified as barriers to care. Of the HCP respondents, 76% (N=53) were women, 46% (N=32) physicians, 28% (N=20) nurses, and 26% (N=18) physiotherapists. 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 HCP respondents felt that factors such as SES (46%, N=32) or race (21%, N=15) influenced access to care, particularly as compared to rural location (77%, N=54).

Conclusion: To our knowledge, this is the first study to assess patient and HCP perceptions of barriers to care for patients with inherited bleeding disorders. Vulnerable patient populations identified by patients and healthcare providers alike included women, particularly those with isolated abnormal uterine bleeding, and patients living in rural Canada, who may have less access to a HTC. This study highlights that, in order to provide equitable and person-centered care for patients with inherited bleeding disorders, SDOH should be taken into consideration. These factors warrant additional study, and will be investigated further using in-depth qualitative patient interviews with Canadian men and women.

Disclosures

Sholzberg: Novartis: Honoraria; Amgen: Honoraria, Research Funding.