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“The Patient Should Have a Choice”: Adults with Sickle Cell Disease Advise Integration of Telemedicine into the Comprehensive Sickle Cell Disease Care Model

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Journal of Racial and Ethnic Health Disparities Aims and scope Submit manuscript

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.

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Abbreviations

COVID-19:

Coronavirus-19

IQR:

Interquartile range

SCD:

Sickle cell disease

COREQ:

Consolidated criteria for reporting qualitative research

N/A:

Not applicable

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Acknowledgements

Thank you to the people with sickle cell disease cared for at the Johns Hopkins Sickle Cell Center for Adults whose courage and grace in the face of an unprecedented, global pandemic continues to inspire us. We extend special thanks to our patients who contributed to this study. We also want to acknowledge the contributions of Taylor Brown as the qualitative interviewer for this study and Maidah Raja for support with manuscript preparation.

Funding

This work received support from PCORI #17303-JHUSOM.

Author information

Authors and Affiliations

  1. Division of Hematology, Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Lydia H. Pecker & Sophie Lanzkron

  2. Department of Gynecology and Obstetrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Lydia H. Pecker

  3. Division of Pulmonary and Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Elizabeth Ruvalcaba & Michelle N. Eakin

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  1. Lydia H. Pecker
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Contributions

LHP analyzed the data and wrote the manuscript; SL, ER, and MNE designed the study, analyzed the data, and contributed to writing the manuscript.

Corresponding author

Correspondence to Lydia H. Pecker.

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Conflict of Interest

LHP receives research funding from the NIH/NHLBI K23HL146841, The Doris Duke Foundation Grant #2020147, American Society of Hematology, Mellon Foundation, and Alexion and is a consultant for Global Blood Therapeutics and Novo Nordisk. SL receives research funding from Imara, Novartis, Global Blood Therapeutics, Takeda, CSL-Behring, HRSA, PCORI, and MD CHRC; consultancy for Bluebird bio, Novo Nordisk, Pfizer, and Magenta; and owns stock in Pfizer and Teva. MNE and ER have no disclosures to report.

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Pecker, L.H., Ruvalcaba, E., Lanzkron, S. et al. “The Patient Should Have a Choice”: Adults with Sickle Cell Disease Advise Integration of Telemedicine into the Comprehensive Sickle Cell Disease Care Model. J. Racial and Ethnic Health Disparities (2023). https://doi.org/10.1007/s40615-023-01780-6

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  • DOI: https://doi.org/10.1007/s40615-023-01780-6

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