Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina

Author:

Ibemere Stephanie O.1ORCID,Tanabe Paula12,Bonnabeau Emily1,Rains Gary2,Eason Kern3,Earls Marian F.4,Shah Nirmish2

Affiliation:

1. Duke University School of Nursing, Durham, NC, USA

2. Duke University School of Medicine, Durham, NC, USA

3. Previously Community Care North Carolina, Cary, NC, USA

4. Marian F. Earls Consulting LLC, Greensboro, NC, USA

Abstract

Background Sickle cell disease (SCD) is a complex chronic blood disorder characterized by severe disease complications ideally managed by both hematologists and primary care providers (PCP’s). PCP’s report knowledge gaps and discomfort with SCD management. Our team developed and a decision support tool for SCD management (SCD Toolbox) based on the National Heart, Lung, and Blood Institute’s SCD guidelines. We surveyed PCPs in North Carolina (NC) prior to formal dissemination to determine current co-management practices, assess toolbox acceptability, use, format preferences, and understand which algorithms would be most helpful. Method A 23-item baseline needs assessment survey was disseminated to PCPs throughout NC. Results A total of 63 medical providers responded to the survey and of these respondents, 64% reported caring for 1 to 10 patients with SCD. Only 39% of PCPs reported regular communication with an SCD specialist. Providers reported the highest level of awareness of the pediatric and adult health maintenance tools (41% and 39% respectively) and highest use of the pediatric (26%) and adult (28%) health maintenance tools. Respondents also expressed a desire to have access to multiple toolbox formats (37%) (website, mobile app and/or paper). Limitations The use of a convenience sample and low survey response are study limitations which hinder generalizability. Conclusions PCPs rarely co-managed with a specialist, had low awareness and use of SCD toolbox, and requested multiple formats for the toolbox.

Funder

Agency for Healthcare Research and Quality

Publisher

SAGE Publications

Subject

Public Health, Environmental and Occupational Health,Community and Home Care

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