Disparities in Genetic Testing for Neurologic Disorders.

Journal

Neurology
ISSN: 1526-632X
Titre abrégé: Neurology
Pays: United States
ID NLM: 0401060

Informations de publication

Date de publication:
26 Mar 2024
Historique:
medline: 6 3 2024
pubmed: 6 3 2024
entrez: 6 3 2024
Statut: ppublish

Résumé

Genetic testing is now the standard of care for many neurologic conditions. Health care disparities are unfortunately widespread in the US health care system, but disparities in the utilization of genetic testing for neurologic conditions have not been studied. We tested the hypothesis that access to and results of genetic testing vary according to race, ethnicity, sex, socioeconomic status, and insurance status for adults with neurologic conditions. We analyzed retrospective data from patients who underwent genetic evaluation and testing through our institution's neurogenetics program. We tested for differences between demographic groups in 3 steps of a genetic evaluation pathway: (1) attending a neurogenetic evaluation, (2) completing genetic testing, and (3) receiving a diagnostic result. We compared patients on this genetic evaluation pathway with the population of all neurology outpatients at our institution, using univariate and multivariable logistic regression analyses. Between 2015 and 2022, a total of 128,440 patients were seen in our outpatient neurology clinics and 2,540 patients underwent genetic evaluation. Black patients were less than half as likely as White patients to be evaluated (odds ratio [OR] 0.49, We observed unequal utilization of our clinical neurogenetics program for patients from marginalized and minoritized demographic groups, especially Black patients. Among patients who do undergo evaluation, all groups benefit similarly from genetic testing when it is indicated. Understanding and removing barriers to accessing genetic testing will be essential to health care equity and optimal care for all patients with neurologic disorders.

Sections du résumé

BACKGROUND AND OBJECTIVES OBJECTIVE
Genetic testing is now the standard of care for many neurologic conditions. Health care disparities are unfortunately widespread in the US health care system, but disparities in the utilization of genetic testing for neurologic conditions have not been studied. We tested the hypothesis that access to and results of genetic testing vary according to race, ethnicity, sex, socioeconomic status, and insurance status for adults with neurologic conditions.
METHODS METHODS
We analyzed retrospective data from patients who underwent genetic evaluation and testing through our institution's neurogenetics program. We tested for differences between demographic groups in 3 steps of a genetic evaluation pathway: (1) attending a neurogenetic evaluation, (2) completing genetic testing, and (3) receiving a diagnostic result. We compared patients on this genetic evaluation pathway with the population of all neurology outpatients at our institution, using univariate and multivariable logistic regression analyses.
RESULTS RESULTS
Between 2015 and 2022, a total of 128,440 patients were seen in our outpatient neurology clinics and 2,540 patients underwent genetic evaluation. Black patients were less than half as likely as White patients to be evaluated (odds ratio [OR] 0.49,
DISCUSSION CONCLUSIONS
We observed unequal utilization of our clinical neurogenetics program for patients from marginalized and minoritized demographic groups, especially Black patients. Among patients who do undergo evaluation, all groups benefit similarly from genetic testing when it is indicated. Understanding and removing barriers to accessing genetic testing will be essential to health care equity and optimal care for all patients with neurologic disorders.

Identifiants

DOI: 10.1212/WNL.0000000000209161 PMID: 38447117
pubmed: 38447117
doi: 10.1212/WNL.0000000000209161
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

e209161

Auteurs

Aaron Baldwin (A)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0002-8970-1270

Juliette Copeland (J)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0009-0009-3128-0782

Meron Azage (M)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0009-0004-6179-6505

Laynie Dratch (L)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0002-2179-3199

Kelsey Johnson (K)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0009-0001-7162-1897

Rachel A Paul (RA)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0009-0001-3793-6326

Defne A Amado (DA)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0001-6202-3900

Michael Baer (M)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0009-0001-3739-4344

Andres Deik (A)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0001-5527-0196

Lauren B Elman (LB)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.

Michael Guo (M)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0002-1357-6389

Ali G Hamedani (AG)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0001-5949-6395

David J Irwin (DJ)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0002-5599-5098

Aaron Lasker (A)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.

Jennifer Orthmann-Murphy (J)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0002-2909-1722

Colin C Quinn (CC)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0003-0618-5854

Thomas F Tropea (TF)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0003-0766-1496

Steven S Scherer (SS)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0002-3900-2367

Russell T Shinohara (RT)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0001-8627-8203

Roy H Hamilton (RH)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0001-8400-0726

Colin A Ellis (CA)

From the Department of Neurology (A.B., J.C., M.A., L.D., K.J., R.A.P., D.A.A., M.B., A.D., L.B.E., M.G., A.G.H., D.J.I., A.L., J.O.-M., C.C.Q., T.F.T., S.S.S., R.H.H., C.A.E.), Penn Statistics in Imaging and Visualization Center (PennSIVE) (R.T.S.), Department of Biostatistics, Epidemiology, and Informatics, and Center for Biomedical Image Computing and Analytics (R.T.S.), Department of Radiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
ORCID: 0000-0003-2152-8106

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