scholarly journals Effort Required to Contact Primary Care Providers After Newborn Screening Identifies Sickle Cell Trait

2012 ◽  
Vol 104 (11-12) ◽  
pp. 528-534 ◽  
Author(s):  
Stephanie A. Christopher ◽  
Jenelle L. Collins ◽  
Michael H. Farrell
Keyword(s):  
Primary Care ◽  
Newborn Screening ◽  
Sickle Cell ◽  
Sickle Cell Trait ◽  
Primary Care Providers ◽  
Care Providers

Primary Care Providers’ Comfort Levels in Caring for Patients with Sickle Cell Disease

2015 ◽  
Vol 108 (9) ◽  
pp. 531-536 ◽  
Author(s):  
Lauren N. Whiteman ◽  
Carlton Haywood ◽  
Sophie Lanzkron ◽  
John J. Strouse ◽  
Leonard Feldman ◽  
...  
Keyword(s):  
Primary Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Primary Care Providers ◽  
Care Providers ◽  
Cell Disease ◽  
Comfort Levels

In the loop: Primary care providers' role in newborn screening for cystic fibrosis

2014 ◽  
Vol 47 (15) ◽  
pp. 147-148
Author(s):  
Robin Z. Hayeems ◽  
Fiona A. Miller ◽  
Carolyn J. Barg ◽  
Yvonne Bombard ◽  
Peter Durie ◽  
...  
Keyword(s):  
Primary Care ◽  
Cystic Fibrosis ◽  
Newborn Screening ◽  
Primary Care Providers ◽  
Care Providers

scholarly journals Using Project Echo Telementoring to Improve Sickle Cell Disease Care in the Midwest

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5923-5923
Author(s):  
Lisa Marie Shook ◽  
Christina Bennett Farrell ◽  
Karen A. Kalinyak ◽  
Stephen C Nelson ◽  
Brandon M. Hardesty ◽  
...  
Keyword(s):  
Primary Care ◽  
Sickle Cell Disease ◽  
Medical Care ◽  
Sickle Cell ◽  
Research Funding ◽  
Primary Care Providers ◽  
Healthcare Outcomes ◽  
Care Providers ◽  
Cell Disease ◽  
Project Echo

Abstract Sickle Treatment and Outcomes Research in the Midwest (STORM) is a regional sickle cell network, funded by the Health Resources and Services Administration Treatment Demonstration Project (HRSA U1EMC27863), established to improve outcomes for individuals with sickle cell disease (SCD) living in Indiana, Illinois, Michigan, Minnesota, Ohio and Wisconsin. The STORM network is led by pediatric and adult hematologists who coordinate network activities in each state, along with a Regional Coordinating Center that organizes efforts throughout the Midwest. The goal of the STORM network is to increase the number of pediatric and adult primary care providers (PCP) who are knowledgeable about the management and treatment of SCD, and who are willing to prescribe and manage hydroxyurea therapy as a means to improve medical care for the approximately 15,000 individuals living with SCD in the Midwest. One PCP engagement strategy that has been implemented to increase provider knowledge in the region is replication of the Project ECHOTM (Extension for Community Healthcare Outcomes) telementoring model. Project ECHO was developed by the University of New Mexico to utilize low-cost, high-impact video technology to link expert inter-disciplinary specialist teams with primary care providers to improve management of chronic diseases. This guided practice telementoring model delivers complex specialty medical care to underserved areas, reduces health disparities, and increases workforce capacity. Project ECHO's methodology is based on 1) using telehealth technology to build healthcare resources where they are scarce; 2) sharing best practices to reduce variation in clinical care; 3) utilizing practice-based learning to develop specialty expertise among providers; and 4) monitoring and evaluating provider outcomes. Project ECHO has demonstrated improved healthcare outcomes in Hepatitis C and several other chronic diseases, and is now being piloted by STORM to test its feasibility and applicability for SCD by using a regional approach with CME accreditation. STORM network site physician leads in each state are recruiting multi-disciplinary primary care teams to participate as "spokes" in monthly SCD TeleECHO clinics. The "hub" led by the STORM Regional Coordinating Center, located at Cincinnati Children's Hospital Medical Center, coordinates implementation and evaluation of the telementoring clinics, delivered through monthly teaching sessions. STORM TeleECHO participants log onto an internet-based virtual meeting site, using a webcam to interact during the session. STORM TeleECHO clinics include brief didactic presentations from nationally-recognized SCD content experts with topics and curriculum based on the National Heart Lung and Blood Institute Evidence-Based Management of Sickle Cell Disease guidelines released in 2014. TeleECHO teaching clinics also include 1-2 de-identified, HIPAA protected case discussions (pediatric and adult) presented by providers who would like medical and psychosocial feedback on management of challenging clinical scenarios. Providers participating in the STORM TeleECHO complete an initial survey assessing knowledge and comfort levels, practice behaviors (including hydroxyurea prescribing practices) and clinic demographics. Satisfaction surveys are sent to participants after each session as part of the CME-credit evaluation. Follow-up surveys at 6 months and 1 year will assess satisfaction, knowledge, comfort level and changes in practice. STORM's TeleECHO was launched in March 2016. Preliminary data indicate an interest in STORM TeleECHO teaching sessions by both pediatric and adult providers across the Midwest region. Future efforts will expand the network to more PCPs in the region, while improving the applicability and utility of STORM TeleECHO in SCD through provider assessment. Disclosures Ware: Global Blood Therapeutics: Consultancy; Biomedomics: Research Funding; Bristol Myers Squibb: Research Funding; Addmedica: Research Funding; Nova Laboratories: Consultancy; Bayer Pharmaceuticals: Consultancy.

Sickle Cell Trait Knowledge and Health Literacy in Caregivers Who Receive in-Person Sickle Cell Trait Education

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 2340-2340 ◽  
Author(s):  
Susan E Creary ◽  
Ismahan Adan ◽  
Joseph R Stanek ◽  
Sarah O'Brien ◽  
Deena J Chisolm ◽  
...  
Keyword(s):  
Health Literacy ◽  
Sickle Cell ◽  
Conflicts Of Interest ◽  
Sickle Cell Trait ◽  
Primary Care Providers ◽  
The United States ◽  
Care Providers ◽  
Childbearing Age ◽  
Limited Health Literacy ◽  
Limited Health

Abstract Background Sickle cell trait (SCT) affects approximately 8% of African Americans and these individuals are at risk of having children with SCT and sickle cell disease (SCD). Universal newborn screening in the United States detects SCT, but only 16% of individuals of childbearing age with SCT know their status. This is because SCT is not reliably recorded in medical records and SCT may not be consistently or effectively communicated to caregivers. Interventions that increase caregivers' SCT knowledge are important so that individuals with SCT can make informed decisions about their reproductive health. Objectives The objectives of this study were to determine if in-person SCT education with a trained educator improved caregivers' SCT knowledge and to assess caregivers' satisfaction with their SCT education. Methods Nationwide Children's Hospital (NCH) is a SCT referral center in Columbus, OH. At NCH, it is standard that caregivers of infants with SCT who are referred by their primary care providers receive in-person SCT education using visual aids from an educator who has completed a hemoglobinopathy counselor training course. From August 2015-July 2016, we performed a prospective, cross-sectional study of English-speaking caregivers of infants with hemoglobin S-trait who presented for education. Caregivers were excluded if they had SCD or previously received SCT education at NCH. Prior to receiving education, subjects electronically reported their demographic information and completed a health literacy assessment using the Newest Vital Sign (NVS, range 0-6) and an 8-question (true/false, multiple choice) pilot-tested, SCT knowledge assessment (SCTKA) that included items from a published SCT knowledge study and items routinely discussed during NCH SCT education. Lower NVS scores suggest a higher likelihood of limited health literacy. Caregivers with SCTKA scores <75% were considered to have low knowledge. Immediately after receiving education, caregivers repeated the SCTKA and provided feedback about the session. Assessments were not available to the educator during the session. The Wilcoxon Signed-Rank test was used to compare SCTKA scores pre- and post-education. Mann-Whitney tests were used to compare NVS and pre-SCTKA scores between those with high and low SCT knowledge after education. Results We recruited 114/374 eligible caregivers who presented during the study period and 113 completed the study. Subjects were mostly female (77%), 18-39 years of age (95.6%), parents or step parents (95.6%) of the child, and some (34.8%) reported that they had SCT. Many caregivers (52.2%) had NVS scores <4, but most (94.7%) reported the education was easy to understand, their questions were answered (99.1%), and they do intend to inform their child of their SCT status (99.1%). Caregivers' median pre-education SCTKA score significantly improved from 62.5% (IQR=25%) to 87.5% (IQR=12.5%) with education (p <0.0001). Only 38.1% of caregivers had high SCT knowledge pre-education but most (90.3%) achieved high knowledge with education. Caregivers with low SCT knowledge after education had significantly lower NVS scores (median=1, p=0.0286) and baseline SCTKA scores (median=50%, p=0.0032) compared to those with high SCT knowledge after education (NVS=3.5, baseline SCTKA median=62.5%). Discussion Our study suggests that caregivers' baseline SCT knowledge is low and improves with in-person education. Despite overall caregiver satisfaction and intensive in-person education from a trained educator, approximately 10% did not achieve high SCT knowledge and our results show that these caregivers may have lower baseline SCT knowledge and health literacy. Assessing caregivers' health literacy and SCT knowledge prior to education may be useful to allow educators to modify their education to meet the needs of those with limited health literacy and SCT knowledge. Future studies need to determine if tailored education results in high SCT knowledge among all caregivers, if caregivers' SCT knowledge is sustained, and if high caregiver knowledge results in more individuals with SCT knowing their status and using this knowledge to inform their reproductive decision-making. Disclosures No relevant conflicts of interest to declare.

scholarly journals Newborn Screening Long Term Follow-Up in the Medical Home

2019 ◽  
Vol 5 (3) ◽  
pp. 25
Author(s):  
Deborah Badawi ◽  
Katharine Bisordi ◽  
Marilyn J. Timmel ◽  
Scott Sorongon ◽  
Erin Strovel
Keyword(s):  
Primary Care ◽  
Newborn Screening ◽  
Clinical Outcomes ◽  
Data Sharing ◽  
Preventive Care ◽  
Medical Home ◽  
Primary Care Providers ◽  
Care Providers ◽  
Long Term Outcomes

This demonstration project explored the feasibility of utilizing data from pediatric primary care providers to evaluate the long-term outcomes of children with disorders identified by newborn screening (NBS). Compliance with national guidelines for care and the morbidity for this population was also examined. Primary care practices were recruited and patients with sickle cell disease or who were deaf/hard of hearing were given the opportunity to enroll in the study. Data were collected on the quality of the medical home with practice data compared to family responses. Clinical outcomes for each patient were assessed by review of medical records and patient surveys. These data sources were compared to determine accuracy of primary care data, morbidity, and receipt of preventive care. Electronic data sharing was explored through transmission of Clinical Document Architecture (CDA) files. Care coordination was a challenge, even in highly accredited medical homes. Providers did not have complete information regarding clinical outcomes and children were not consistently receiving recommended preventive care. Electronic data sharing with public health departments encountered interface challenges. Primary care providers in the USA should not currently be used as a sole source to evaluate long-term outcomes of children with disorders identified by NBS.

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

2021 ◽  
Vol 12 ◽  
pp. 215013272110490
Author(s):  
Stephanie O. Ibemere ◽  
Paula Tanabe ◽  
Emily Bonnabeau ◽  
Gary Rains ◽  
Kern Eason ◽  
...  
Keyword(s):  
Primary Care ◽  
North Carolina ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Primary Care Providers ◽  
Care Providers ◽  
Cell Disease ◽  
Convenience Sample ◽  
Health Maintenance ◽  
Blood Disorder

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.

Sign in / Sign up

Export Citation Format

Share Document