Evidence map›Paper›PMID 38448911›Full record

ArticleBMC health services research2024

Social determinants of health and treatment center affiliation: analysis from the sickle cell disease implementation consortium registry.

Gustavo G Mendez, Judith M Nocek, Donald J Brambilla, Sara Jacobs, Oladipo Cole, Julie Kanter, Jeffrey Glassberg, Kay L Saving, Cathy L Melvin, Robert W Gibson and 7 more

Open access · goldAbstract read
In one paragraph

Article in BMC health services research, 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
1.8field-weighted citation impact, top 16% 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, 4 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

17 authors at 10 institutions in 1 country.

Gustavo G MendezUniversity of Illinois Chicago, 840 S. Wood St., MC 856 Pediatrics, 60612, Chicago, IL, USA.
Judith M NocekUniversity of Illinois Chicago, 840 S. Wood St., MC 856 Pediatrics, 60612, Chicago, IL, USA.
Donald J BrambillaRTI International, Research Triangle Park, USA.
Sara JacobsRTI International, Research Triangle Park, USA.
Oladipo ColeWashington University, St. Louis, USA.
Julie KanterUniversity of Alabama at Birmingham, Birmingham, USA.
Jeffrey GlassbergIcahn School of Medicine at Mount Sinai, New York City, USA.
Kay L SavingUniversity of Illinois College of Medicine at Peoria, Peoria, USA.
Cathy L MelvinMedical University of South Carolina, Charleston, USA.
Robert W GibsonAugusta University, Augusta, USA.
Marsha TreadwellUniversity of California San Francisco, San Francisco, USA.
George L JacksonDuke University, Durham, USA.
Allison A KingWashington University, St. Louis, USA.
Victor R GordeukUniversity of Illinois Chicago, 840 S. Wood St., MC 856 Pediatrics, 60612, Chicago, IL, USA.
Barbara KronerRTI International, Research Triangle Park, USA.
Lewis L HsuUniversity of Illinois Chicago, 840 S. Wood St., MC 856 Pediatrics, 60612, Chicago, IL, USA. LewHsu@uic.edu.
Sickle Cell Disease Implementation Consortium
RTI International · USUniversity of Illinois Chicago · USWashington University in St. Louis · USAugusta University · USDurham VA Health Care System · USIcahn School of Medicine at Mount Sinai · USIllinois College · USMedical University of South Carolina · USUniversity of Alabama at Birmingham · USUniversity of California, San Francisco · US

Funding

Data Coordinating Center for Sickle Cell Disease Implementation Consortium (SCDIC)U24HL133948 · NHLBI · RESEARCH TRIANGLE INSTITUTE · PI JACOBS, SARA RUBIN, KRONER, BARBARA L · 2016 to 2021
$7.3M
New York City Sickle Cell Implementation Science ConsortiumU01HL133997 · NHLBI · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · PI RICHARDSON, LYNNE D. · 2016 to 2021
$5.4M
The Implementation of Cognitive Screening and Educational Support to Improve Outcomes of Adolescents and Young Adults with Sickle Cell Disease: From Clinic to the Community and BackU01HL133994 · NHLBI · WASHINGTON UNIVERSITY · PI KING, ALLISON A · 2016 to 2021
$5.2M
Improving Sickle cell care in Adolescents & Adults in Chicago (ISAAC)U01HL134042 · NHLBI · UNIVERSITY OF ILLINOIS AT CHICAGO · PI GORDEUK, VICTOR R, HIRSCHTICK, JANA · 2016 to 2021
$5.1M
Implementation of Medical Homes for Evidence Based Care of Adolescents and Adults with Sickle Cell DiseaseU01HL134004 · NHLBI · AUGUSTA UNIVERSITY · PI GIBSON, ROBERT WILLIAM, KUTLAR, ABDULLAH · 2016 to 2021
$5.0M
Improving SCD Care using Web-based Guidelines, Nurse Care Managers and Peer Mentors in Primary Care and Emergency Departments in Central North CarolinaU01HL133964 · NHLBI · DUKE UNIVERSITY · PI SHAH, NIRMISH R, TANABE, PAULA · 2016 to 2021
$4.8M
RE-aiming at Hydroxyurea Adherence for Sickle cell with mHealth (RE-HASH)U01HL133996 · NHLBI · ST. JUDE CHILDREN'S RESEARCH HOSPITAL · PI HANKINS, JANE SILVA, KLESGES, LISA M · 2016 to 2021
$4.6M
SC-Links - Linking the Sickle Cell Community, Providers and Systems to Improve Sickle Cell Disease CareU01HL134007 · NHLBI · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI TREADWELL, MARSHA J, VICHINSKY, ELLIOTT P · 2016 to 2021
$4.1M
Implementation of a Sickle Cell Enhanced Novel Care Network in South Carolina (iSCENSC)U01HL133990 · NHLBI · MEDICAL UNIVERSITY OF SOUTH CAROLINA · PI FLOREZ, HERMES JOSE · 2016 to 2021
$4.1M
NHLBI NIH HHS U01 HL133964NHLBI NIH HHS U01 HL133990NHLBI NIH HHS U01 HL133994NHLBI NIH HHS U01 HL133996NHLBI NIH HHS U01 HL133997NHLBI NIH HHS U01 HL134004NHLBI NIH HHS U01 HL134007NHLBI NIH HHS U01 HL134042NHLBI NIH HHS U24 HL133948NIH HHS 3U01HL134042-04S2NIH HHS 5U01HL134042-S2NIH HHS U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042
6 · The paper itself

Abstract

backgroundAdults with sickle cell disease (SCD) suffer early mortality and high morbidity. Many are not affiliated with SCD centers, defined as no ambulatory visit with a SCD specialist in 2 years. Negative social determinants of health (SDOH) can impair access to care. HYPOTHESIS: Negative SDOH are more likely to be experienced by unaffiliated adults than adults who regularly receive expert SCD care.

methodsCross-sectional analysis of the SCD Implementation Consortium (SCDIC) Registry, a convenience sample at 8 academic SCD centers in 2017-2019. A Distressed Communities Index (DCI) score was assigned to each registry member's zip code. Insurance status and other barriers to care were self-reported. Most patients were enrolled in the clinic or hospital setting.

resultsThe SCDIC Registry enrolled 288 Unaffiliated and 2110 Affiliated SCD patients, ages 15-45y. The highest DCI quintile accounted for 39% of both Unaffiliated and Affiliated patients. Lack of health insurance was reported by 19% of Unaffiliated versus 7% of Affiliated patients. The most frequently selected barriers to care for both groups were "previous bad experience with the healthcare system" (40%) and "Worry about Cost" (17%). SCD co-morbidities had no straightforward trend of association with Unaffiliated status. The 8 sites' results varied.

conclusionThe DCI economic measure of SDOH was not associated with Unaffiliated status of patients recruited in the health care delivery setting. SCDIC Registrants reside in more distressed communities than other Americans. Other SDOH themes of affordability and negative experiences might contribute to Unaffiliated status. Recruiting Unaffiliated SCD patients to care might benefit from systems adopting value-based patient-centered solutions.

Indexed as

Anemia, Sickle CellSocial Determinants of HealthAdultCross-Sectional StudiesEmotionsHumansRegistriesDistressed communities IndexLinkage to careSCD center affiliationSickle cell diseaseSocial determinants of health

Identifiers

PMID38448911
PMCPMC10916176
OpenAlexW4392507882

What OpenQuestion holds

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LicenceCC BY
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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.