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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:ObjectiveTo provide a research agenda and recommendations to address inequities in access to health care.Data sources and study settingThe Agency for Healthcare Research and Quality (AHRQ) organized a Health Equity Summit in July 2022 to evaluate what equity in access to health care means in the context of AHRQ's mission and health care delivery implementation portfolio. The findings are a result of this Summit, and subsequent convenings of experts on access and equity from academia, industry, and the government.Study designMulti-stakeholder input from AHRQ's Health Equity Summit, author consensus on a framework and key knowledge gaps, and summary of evidence from the supporting literature in the context of the framework ensure comprehensive recommendations.Data collection/extraction methodsThrough a stakeholder-engaged process, themes were developed to conceptualize access with a lens toward health equity. A working group researched the most appropriate framework for access to care to classify limitations identified during the Summit and develop recommendations supported by research in the context of the framework. This strategy was intentional, as the literature on inequities in access to care may itself be biased.Principal findingsThe Levesque et al. framework, which incorporates multiple dimensions of access (approachability, acceptability, availability, accommodation, affordability, and appropriateness), is the backdrop for framing research priorities for AHRQ. However, addressing inequities in access cannot be done without considering the roles of racism and intersectionality. Recommendations include funding research that not only measures racism within health care but also tests burgeoning anti-racist practices (e.g., co-production, provider training, holistic review, discrimination reporting, etc.), acting as a convener and thought leader in synthesizing best practices to mitigate racism, and forging the path forward for research on equity and access.ConclusionsAHRQ is well-positioned to develop an action plan, strategically fund it, and convene stakeholders across the health care spectrum to employ these recommendations.

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:BackgroundA frequently used feature of electronic patient portals is the viewing of test results. Research on patient portals is abundant and offers evidence to help portal implementers make policy and practice decisions. In contrast, no comparable comprehensive summary of research addresses the direct release of and patient access to test results.ObjectiveThis scoping review aims to analyze and synthesize published research focused on patient and health care provider perspectives on the direct release of laboratory, imaging, and radiology results to patients via web portals.MethodsPRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Searches were conducted in CINAHL, MEDLINE, and other databases. Citations were screened in Covidence using the inclusion and exclusion criteria. Primary studies that focused on patient and health care provider perspectives on patient access to laboratory and imaging results via web portals were included. An updated search was conducted up to August 2023. Our review included 27 articles-20 examining patient views, 3 examining provider views, and 4 examining both patient and provider views. Data extraction and inductive data analysis were informed by sensitizing concepts from sociomaterial perspectives, and 15 themes were generated.ResultsPatient perspectives (24 papers) were synthesized using nine themes: (1) patterns of use and patient characteristics; (2) emotional response when viewing the results and uncertainty about their implications; (3) understanding test results; (4) preferences for mode and timing of result release; (5). information seeking and patients' actions motivated by viewing results via a portal; (6) contemplating changes in behavior and managing own health; (7) benefits of accessing test results via a portal; (8) limitations of accessing test results via a portal; and (9) suggestions for portal improvement. Health care provider perspectives (7 papers) were synthetized into six themes: (1) providers' view of benefits of patient access to results via the portal; (2) effects on health care provider workload; (3) concerns about patient anxiety; (4) timing of result release into the patient portal; (5) the method of result release into the patient portal: manual versus automatic release; and (6) the effects of hospital health information technology system on patient quality outcomes.ConclusionsThe timing of the release of test results emerged as a particularly important topic. In some countries, the policy context may motivate immediate release of most tests directly into patient portals. However, our findings aim to make policy makers, health administrators, and other stakeholders aware of factors to consider when making decisions about the timing of result release. This review is sensitive to the characteristics of patient populations and portal technology and can inform result release framework policies. The findings are timely, as patient portals have become more common internationally.

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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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