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

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.

SUBMITTER: Arya S

PROVIDER: S-EPMC7032703 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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

Arya Sumedha S Wilton Pamela P Page David D Boma-Fischer Laurence L Floros Georgina G Dainty Katie N KN Winikoff Rochelle R Sholzberg Michelle M

PloS one 20200220 2

<h4>Introduction</h4>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.<h4>Methods</h4>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 Direct ...[more]

PMID: 32078655

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Project description:Excessive bleeding at surgery is a feared complication in patients with inherited platelet disorders. However, very few studies have evaluated the frequency of surgical bleeding in these hemorrhagic disorders. We performed a worldwide, multicentric, retrospective study to assess the bleeding complications of surgery, the preventive and therapeutic approaches adopted, and their efficacy in patients with inherited platelet disorders: the Surgery in Platelet disorders And Therapeutic Approach (SPATA) study. We rated the outcome of 829 surgical procedures carried out in 423 patients with well-defined forms of inherited platelet disorders: 238 inherited platelet function disorders and 185 inherited platelet number disorders. Frequency of surgical bleeding was high in patients with inherited platelet disorders (19.7%), with a significantly higher bleeding incidence in inherited platelet function disorders (24.8%) than in inherited platelet number disorders (13.4%). The frequency of bleeding varied according to the type of inherited platelet disorder, with biallelic Bernard Soulier syndrome having the highest occurrence (44.4%). Frequency of bleeding was predicted by a pre-operative World Health Organization bleeding score of 2 or higher. Some types of surgery were associated with a higher bleeding incidence, like cardiovascular and urological surgery. The use of pre-operative pro-hemostatic treatments was associated with a lower bleeding frequency in patients with inherited platelet function disorders but not in inherited platelet number disorders. Desmopressin, alone or with antifibrinolytic agents, was the preventive treatment associated with the lowest bleedings. Platelet transfusions were used more frequently in patients at higher bleeding risk. Surgical bleeding risk in inherited platelet disorders is substantial, especially in inherited platelet function disorders, and bleeding history, type of disorder, type of surgery and female sex are associated with higher bleeding frequency. Prophylactic pre-operative pro-hemostatic treatments appear to be required and are associated with a lower bleeding incidence.

Project description:INTRODUCTION:Many strategies to alleviate racial/ethnic disparities in surgical care target healthcare providers. Yet limited data exists about the perception of disparities among the range of clinical staff who work in perioperative settings. Such information could help initiate conversations about disparities in perioperative care and, if necessary, implement interventions to alleviate them. Our aim was to evaluate the association between sociodemographic characteristics, clinical position (physicians and non-physicians) and perception of perioperative disparities at a large tertiary care center. METHODS:We surveyed perioperative staff at the institution using an anonymous online survey. Primary outcome was respondents' perception of disparities in perioperative care at the institution due to patients' insurance status/type, ability to speak English, education, and racial/ethnic minority status. The association between clinical position (physician vs. non-physician) and perception of disparities was assessed in bivariate and then multivariable analysis, adjusting for respondents' race, sex, age, and years at the institution. Secondary outcomes included perception of disparities in perioperative care in the United States due to patients' insurance status/type, ability to speak English, education, and racial/ethnic minority status. RESULTS:217 completed questions that could be analyzed. Among these responders, 101 were physicians (46.5%), 165 (76.0%) were white, and 144 (66.4.%) were female. Bivariate and multivariate analysis revealed that physicians had higher perception of disparities in perioperative care at the institution based on patients' ability to speak English, education, and racial/ethnic minority status. Physicians also had higher perceptions of disparities in perioperative care in the United States than non-physicians. CONCLUSIONS:Physicians reported higher perceptions of disparities in perioperative care than non-physicians, potentially explained by differences in training or contact with patients. Such findings serve as a first step at examining and discussing disparities in perioperative care and warrant further study.

Dataset Information

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

Publications

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

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