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

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 t...

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Main Authors: Stephanie O. Ibemere, Paula Tanabe, Emily Bonnabeau, Gary Rains, Kern Eason, Marian F. Earls, Nirmish Shah
Format: Article
Language:English
Published: SAGE Publishing 2021-10-01
Series:Journal of Primary Care & Community Health
Online Access:https://doi.org/10.1177/21501327211049050
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author Stephanie O. Ibemere
Paula Tanabe
Emily Bonnabeau
Gary Rains
Kern Eason
Marian F. Earls
Nirmish Shah
author_facet Stephanie O. Ibemere
Paula Tanabe
Emily Bonnabeau
Gary Rains
Kern Eason
Marian F. Earls
Nirmish Shah
author_sort Stephanie O. Ibemere
collection DOAJ
description 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.
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spelling doaj.art-44c5499d24e34fd0834b2ed8f67235772022-12-21T21:53:01ZengSAGE PublishingJournal of Primary Care & Community Health2150-13272021-10-011210.1177/21501327211049050Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North CarolinaStephanie O. Ibemere0Paula Tanabe1Emily Bonnabeau2Gary Rains3Kern Eason4Marian F. Earls5Nirmish Shah6Duke University School of Nursing, Durham, NC, USADuke University School of Medicine, Durham, NC, USADuke University School of Nursing, Durham, NC, USADuke University School of Medicine, Durham, NC, USAPreviously Community Care North Carolina, Cary, NC, USAMarian F. Earls Consulting LLC, Greensboro, NC, USADuke University School of Medicine, Durham, NC, USABackground 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.https://doi.org/10.1177/21501327211049050
spellingShingle Stephanie O. Ibemere
Paula Tanabe
Emily Bonnabeau
Gary Rains
Kern Eason
Marian F. Earls
Nirmish Shah
Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina
Journal of Primary Care & Community Health
title Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina
title_full Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina
title_fullStr Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina
title_full_unstemmed Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina
title_short Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina
title_sort awareness and use of the sickle cell disease toolbox by primary care providers in north carolina
url https://doi.org/10.1177/21501327211049050
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