Evidence map›Paper›PMID 37682425›Full record

ArticleJournal of racial and ethnic health disparities2024

"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

Open access · greenAbstract read
In one paragraph

Article in Journal of racial and ethnic health disparities, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
0.3field-weighted citation impact, top 34% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed, 1 citations in OpenAlex.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors at 1 institution in 1 country.

Lydia H PeckerDivision of Hematology, Johns Hopkins University School of Medicine, Baltimore, MD, USA. lpecker1@jhmi.edu.ORCID 0000-0002-8371-9752
Elizabeth RuvalcabaDivision of Pulmonary and Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Sophie LanzkronDivision of Hematology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Michelle N EakinDivision of Pulmonary and Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Johns Hopkins University · US

Funding

Clinical and genetic risk factors associated with adverse long-term health outcomes after curative therapies in individuals with sickle cell diseaseU01HL156620 · NHLBI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI DEBAUN, MICHAEL R., FITZHUGH, COURTNEY D · 2021 to 2025
$4.1M
OVARIAN RESERVE IN POST-MENARCHAL FEMALES WITH SICKLE CELL ANEMIAK23HL146841 · NHLBI · JOHNS HOPKINS UNIVERSITY · PI PECKER, LYDIA · 2020 to 2024
$1.2M
NHLBI NIH HHS K23 HL146841NHLBI NIH HHS U01 HL156620Patient-Centered Outcomes Research Institute 17303-JHUSOM
6 · The paper itself

Abstract

backgroundAdults 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.

methodsAdults 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.

resultsAmong 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.

conclusionsTelemedicine 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.

Indexed as

Anemia, Sickle CellCOVID-19TelemedicineAdultFemaleHumansMaleMiddle AgedPatient PreferenceQualitative ResearchYoung AdultHealth EquitySickle cell diseaseTelemedicine

Identifiers

PMID37682425
PMCPMC10983044
OpenAlexW4386529522

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.