The purpose of this study is to learn more about how the use of two different types of telemedicine (distance medical care) can address barriers to receiving comprehensive sickle cell care, and whether care can be improved. Aim 1: Adapt two telemedicine models (i.e., hub-and-spoke; direct-to-consumer) for use with children with SCD using caregiver input from our preliminary K12 work. Aim 2: Demonstrate the feasibility of the telemedicine models developed in Aim 1 as the models undergo successive stakeholder refinement during use in actual clinical care. Aim 3: Evaluate the effectiveness of the refined models from Aim 2 in a pre/post study by assessing (a) process of care measures, (b) provider satisfaction, (c) caregiver/patient-centered outcomes, and (d) clinical outcomes and healthcare utilization.
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Measuring adherence to appointment in sickle cell care.
Timeframe: 1 year
Measuring adherence to lab draws in sickle cell care.
Timeframe: 6 months
Measuring healthcare utilization pre and post telemedicine participation.
Timeframe: 1 year
Measuring collaboration of primary care provider and subspecialty care provider.
Timeframe: 1 year
Provider Feedback
Timeframe: 1 year
Caregiver feedback
Timeframe: 1 year