Data Collection

Minimum Data Set

During the 2014-17 SCDTDP grant period, the main data project was a collaborative minimum data set. The PSCRC collect data on over 400 patients from 7 states, with 10 individual sites participating. Overall data pertaining to hydroxyurea use, barriers to use, and demographics were gathered to give a better picture of variables associated with hydroxyurea use for individuals with sickle cell disease, and parents of children with sickle cell disease in our region.

SCDTDP Provider Survey

Early in the 2017-18 grant year, HRSA announced the goal to launch a provider survey that would allow us to track the number of providers within each region of the SCDTDP who had participated in the Project ECHO telementoring sessions about sickle cell disease care. The survey asks about comfort level with providing sickle cell disease care and specifics about the number of patients with sickle cell disease seen and whether they were prescribed hydroxyurea. The PSCRC has developed the survey in REDCap so that the data can be directly entered into the database via a public survey link. We will be sending the link to all providers who have participated in past Project ECHO telementoring sessions sponsored by the PSCRC. The survey is longitudinal: it will be re-administered to participating providers 12 months after the first administration.

Telemedicine

With the COVID-19 pandemic, there has been an abrupt shift to telemedicine for the delivery of sickle cell disease care. With this shift has come rapid deployment of technical resources and training as well as temporary improved reimbursement. The potential benefits of this change in the medical practice paradigm for the overall population of adults and children with sickle cell disease is unknown at present.

The Regional Leads of the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program (SCDTDRCP) has designed three studies to investigate the feasibility, utility and acceptability of the use of telemedicine (video or phone) for routine and well visits for children and adults with sickle cell disease. These studies include:

(1) a telemedicine provider survey

(2) a telemedicine quality improvement data capture to track trends in the frequency of use of telemedicine compared to in-person visits and

(3) a telemedicine patient satisfaction survey.

The quality improvement study will allow us to gauge the impact of the option for telemedicine visits in terms of scheduling patterns and visit completion rates. The surveys are designed to capture comfort level with telemedicine, acceptability of telemedicine and overall views on the use of telemedicine for sickle cell disease among patients and providers. In addition, the baseline provider survey is designed to assess “readiness” to initiate telemedicine.

Understanding how feasible and successful telemedicine visits are can inform continued use once the pandemic is under control and decisions about telemedicine resources and reimbursement are being re-considered.

For more information, contact Marsha Treadwell, PhD at marsha.treadwell@ucsf.edu or Ashley Fraser, MPH, Study Coordinator III, Department of Hematology/Oncology, UCSF Benioff Children’s Hospital Oakland at ashley.fraser@ucsf.edu.

Minimum Data Set

During the 2014-17 SCDTDP grant period, the main data project was a collaborative minimum data set. The PSCRC collect data on over 400 patients from 7 states, with 10 individual sites participating. Overall data pertaining to hydroxyurea use, barriers to use, and demographics were gathered to give a better picture of variables associated with hydroxyurea use for individuals with sickle cell disease, and parents of children with sickle cell disease in our region.

SCDTDP Provider Survey

Early in the 2017-18 grant year, HRSA announced the goal to launch a provider survey that would allow us to track the number of providers within each region of the SCDTDP who had participated in the Project ECHO telementoring sessions about sickle cell disease care. The survey asks about comfort level with providing sickle cell disease care and specifics about the number of patients with sickle cell disease seen and whether they were prescribed hydroxyurea. The PSCRC has developed the survey in REDCap so that the data can be directly entered into the database via a public survey link. We will be sending the link to all providers who have participated in past Project ECHO telementoring sessions sponsored by the PSCRC. The survey is longitudinal: it will be re-administered to participating providers 12 months after the first administration.

For more information, contact Marsha Treadwell, PhD at mtreadwell@mail.cho.org or Michael Rowland, MPH at mrowland@c3dibd.org.

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This website is partially supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $347,436.00. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.

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