Comparison of Phenotypic Characteristics and Prognosis Between Black and White Patients in a Tertiary ALS Clinic

© 2020 American Academy of Neurology..

OBJECTIVE: To compare characteristics between Black and White patients with amyotrophic lateral sclerosis (ALS) in order to identify disparities and phenotypic variability.

METHODS: We performed database review for patients seen between 1997 and 2020 at the Emory ALS Center in Atlanta, Georgia. Patients with ALS were included for analyses if race was self-reported as Black or White and symptom onset was prior to January 1, 2017. Variables examined include race, age at onset, diagnostic delay, site of onset, median income, C9orf72 mutation status, feeding tube and tracheostomy status, vital capacity, Amyotrophic Lateral Sclerosis Functional Rating Scale-revised(ALSFRS-R) score, and survival time.

RESULTS: A total of 2,363 patient records were queried, and 1,298 were included in analysis; 203 self-identified as Black and 1,095 as White. Black patients had younger age at symptom onset, lower frequency of C9orf72 mutations, lower median income, longer diagnostic delay, and lower baseline ALSFRS-R and vital capacity compared to White patients. Black patients had a longer median survival than White patients; however, race was not an independent predictor of survival time when controlling for age at symptom onset, bulbar onset, and C9orf72 positivity.

CONCLUSIONS: Black patients with ALS had longer median survival compared to White patients, but race was not independently associated with survival after controlling for age, site of onset, and C9orf72 status, factors known to predict prognosis. Black patients with ALS had longer diagnostic delay and lower baseline ventilatory and functional status at first clinic visit compared to White patients, which could be suggestive of barriers to tertiary care. Further studies are needed to identify the underlying causes of ALS racial differences.

Errataetall:

CommentIn: Neurology. 2021 Feb 9;96(6):241-242. - PMID 33372029

Medienart:

E-Artikel

Erscheinungsjahr:

2021

Erschienen:

2021

Enthalten in:

Zur Gesamtaufnahme - volume:96

Enthalten in:

Neurology - 96(2021), 6 vom: 09. Feb., Seite e840-e844

Sprache:

Englisch

Beteiligte Personen:

Brand, David [VerfasserIn]
Polak, Meraida [VerfasserIn]
Glass, Jonathan D [VerfasserIn]
Fournier, Christina N [VerfasserIn]

Links:

Volltext

Themen:

C9orf72 Protein
C9orf72 protein, human
Comparative Study
Journal Article

Anmerkungen:

Date Completed 23.02.2021

Date Revised 07.12.2022

published: Print-Electronic

CommentIn: Neurology. 2021 Feb 9;96(6):241-242. - PMID 33372029

Citation Status MEDLINE

doi:

10.1212/WNL.0000000000011396

funding:

Förderinstitution / Projekttitel:

PPN (Katalog-ID):

NLM319362132