"The Patient Should Have a Choice": Adults with Sickle Cell Disease Advise Integration of Telemedicine into the Comprehensive Sickle Cell Disease Care Model.
Lydia H Pecker, Elizabeth Ruvalcaba, Sophie Lanzkron, Michelle N Eakin
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Abstract
Background: Adults with sickle cell disease (SCD) constitute a unique and vulnerable patient population with complex healthcare needs including routine follow-up visits and acute care evaluations. The COVID-19 pandemic accelerated healthcare systems' transition to providing telemedicine care. The purpose of this qualitative study was to elicit the perspectives of adults with SCD about their experience with telemedicine during the COVID-19 pandemic and to understand their preferences with respect to future telemedicine care.
Methods: Adults with SCD who had a telemedicine visit between March August 2020 and were cared for at our SCD center were eligible to participate in a one-time interview. Interviews were audio taped, transcribed, and analyzed using NVIVO software.
Results: Among 30 interviewed subjects, 28 transcripts were available for analysis. Analysis identified that participants compared telemedicine to in-person care across several domains including (a) how time is used, (b) personal safety, (c) pain management, and (d) maintaining caring relationships. Participants agreed that telemedicine care was most appropriate for follow-up care and less useful for painful crises or urgent needs. They expressed concerns about the need to expand telemedicine to other specialities and to ensure that privacy and technical support are provided.
Conclusions: Telemedicine appeals to adults with SCD for maintenance SCD care. Decisions about in-person or telemedicine care need to be made in discussion with the patient with particular attention to pain management preferences. Ultimately, telemedicine is an option that adults with SCD would like to see continue and that has the potential to expand access to care to more geographically distant regions.
期刊介绍：
Journal of Racial and Ethnic Health Disparities reports on the scholarly progress of work to understand, address, and ultimately eliminate health disparities based on race and ethnicity. Efforts to explore underlying causes of health disparities and to describe interventions that have been undertaken to address racial and ethnic health disparities are featured. Promising studies that are ongoing or studies that have longer term data are welcome, as are studies that serve as lessons for best practices in eliminating health disparities. Original research, systematic reviews, and commentaries presenting the state-of-the-art thinking on problems centered on health disparities will be considered for publication. We particularly encourage review articles that generate innovative and testable ideas, and constructive discussions and/or critiques of health disparities.Because the Journal of Racial and Ethnic Health Disparities receives a large number of submissions, about 30% of submissions to the Journal are sent out for full peer review.
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