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.
Study Type
INTERVENTIONAL
Allocation
NON_RANDOMIZED
Purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Enrollment
24
Each arm delivers standard sickle cell care using a different model based on patient location.
Indiana University
Indianapolis, Indiana, United States
Measuring adherence to appointment in sickle cell care.
Failed appointments in Electronic Medical Record - no more than one failed appointment during pilot year.
Time frame: 1 year
Measuring adherence to lab draws in sickle cell care.
Adherence to lab draws - a minimum of one complete blood count per six months.
Time frame: 6 months
Measuring healthcare utilization pre and post telemedicine participation.
Will determine the frequency of 1) vasoocclusive pain episode; 2) acute chest syndrome; 3) Emergency department visits; 4) hospitalizations. This data will be collected through chart abstraction from Electronic Medical Record one year prior to study entry and one year on study.
Time frame: 1 year
Measuring collaboration of primary care provider and subspecialty care provider.
Documentation of Primary Care Provider communication of visits in the electronic medical record at least 70% of the time.
Time frame: 1 year
Provider Feedback
Telemedicine Acceptance Questionnaire (TAQ) - will be given to all providers participating in telemedicine visits after every telemedicine visit. 0-5 Likert scale
Time frame: 1 year
Caregiver feedback
Telemedicine satisfaction survey (TESS) - administered to caregivers following each telemedicine visit. 0-5 Likert scale
Time frame: 1 year
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