Geographic and Specialty Access Disparities in US Pediatric Leukodystrophy Diagnosis.
J Pediatr
; 220: 193-199, 2020 05.
Article
em En
| MEDLINE
| ID: mdl-32143930
OBJECTIVE: To examine disparities in the diagnosis of leukodystrophies including geographic factors and access to specialty centers. STUDY DESIGN: Retrospective cohort study of pediatric patients admitted to Pediatric Health Information System hospitals. Patients with leukodystrophy were identified with International Classification of Diseases, Tenth Revision, Clinical Modification diagnostic codes for any of 4 leukodystrophies (X-linked adrenoleukodystrophy, Hurler disease, Krabbe disease, and metachromatic leukodystrophy). We used 3-level hierarchical generalized logistic modeling to predict diagnosis of a leukodystrophy based on distance traveled for hospital, neighborhood composition, urban/rural context, and access to specialty center. RESULTS: We identified 501 patients with leukodystrophy. Patients seen at a leukodystrophy center of excellence hospital were 1.73 times more likely to be diagnosed than patients at non-center of excellence hospitals. Patients who traveled farther were more likely to be diagnosed than those who traveled shorter. Patients living in a Health Professionals Shortage Area zip code were 0.86 times less likely to be diagnosed than those living in a non-Health Professionals Shortage Area zip code. CONCLUSIONS: Geographic factors affect the diagnosis of leukodystrophies in pediatric patients, particularly in regard to access to a center with expertise in leukodystrophies. Our findings suggest a need for improving access to pediatric specialists and possibly deploying specialists or diagnostic testing more broadly.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Mucopolissacaridose I
/
Adrenoleucodistrofia
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Disparidades em Assistência à Saúde
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Acessibilidade aos Serviços de Saúde
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Leucodistrofia de Células Globoides
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Leucodistrofia Metacromática
Tipo de estudo:
Diagnostic_studies
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Etiology_studies
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Incidence_studies
/
Observational_studies
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Prognostic_studies
/
Risk_factors_studies
Aspecto:
Determinantes_sociais_saude
Limite:
Adolescent
/
Child
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Child, preschool
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Female
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Humans
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Infant
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Male
País/Região como assunto:
America do norte
Idioma:
En
Revista:
J Pediatr
Ano de publicação:
2020
Tipo de documento:
Article
País de publicação:
Estados Unidos