Literature DB >> 21836521

Disparities in the diagnostic process of Duchenne and Becker muscular dystrophy.

Caleb Holtzer1, F John Meaney, Jennifer Andrews, Emma Ciafaloni, Deborah J Fox, Katherine A James, Zhenqiang Lu, Lisa Miller, Shree Pandya, Lijing Ouyang, Christopher Cunniff.   

Abstract

PURPOSE: To determine whether sociodemographic factors are associated with delays at specific steps in the diagnostic process of Duchenne and Becker muscular dystrophy.
METHODS: We examined abstracted medical records for 540 males from population-based surveillance sites in Arizona, Colorado, Georgia, Iowa, and western New York. We used linear regressions to model the association of three sociodemographic characteristics with age at initial medical evaluation, first creatine kinase measurement, and earliest DNA analysis while controlling for changes in the diagnostic process over time. The analytical dataset included 375 males with information on family history of Duchenne and Becker muscular dystrophy, neighborhood poverty levels, and race/ethnicity.
RESULTS: Black and Hispanic race/ethnicity predicted older ages at initial evaluation, creatine kinase measurement, and DNA testing (P < 0.05). A positive family history of Duchenne and Becker muscular dystrophy predicted younger ages at initial evaluation, creatine kinase measurement and DNA testing (P < 0.001). Higher neighborhood poverty was associated with earlier ages of evaluation (P < 0.05).
CONCLUSIONS: Racial and ethnic disparities in the diagnostic process for Duchenne and Becker muscular dystrophy are evident even after adjustment for family history of Duchenne and Becker muscular dystrophy and changes in the diagnostic process over time. Black and Hispanic children are initially evaluated at older ages than white children, and the gap widens at later steps in the diagnostic process.

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Year:  2011        PMID: 21836521     DOI: 10.1097/GIM.0b013e31822623f1

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  11 in total

1.  Parental Reflections on the Diagnostic Process for Duchenne Muscular Dystrophy: A Qualitative Study.

Authors:  Roxanna M Bendixen; Amy Houtrow
Journal:  J Pediatr Health Care       Date:  2016-10-12       Impact factor: 1.812

2.  Clinical Follow-Up for Duchenne Muscular Dystrophy Newborn Screening: A Proposal.

Authors:  Jennifer M Kwon; Hoda Z Abdel-Hamid; Samiah A Al-Zaidy; Jerry R Mendell; Annie Kennedy; Kathi Kinnett; Valerie A Cwik; Natalie Street; Julie Bolen; John W Day; Anne M Connolly
Journal:  Muscle Nerve       Date:  2016-06-13       Impact factor: 3.217

3.  Selected clinical and demographic factors and all-cause mortality among individuals with Duchenne muscular dystrophy in the Muscular Dystrophy Surveillance, Tracking, and Research Network.

Authors:  Pangaja Paramsothy; Yinding Wang; Bo Cai; Kristin M Conway; Nicholas E Johnson; Shree Pandya; Emma Ciafaloni; Katherine D Mathews; Paul A Romitti; James F Howard; Catharine Riley
Journal:  Neuromuscul Disord       Date:  2022-04-30       Impact factor: 3.538

4.  Time to diagnosis of Duchenne muscular dystrophy remains unchanged: Findings from the Muscular Dystrophy Surveillance, Tracking, and Research Network, 2000-2015.

Authors:  Shiny Thomas; Kristin M Conway; Olushola Fapo; Natalie Street; Katherine D Mathews; Joshua R Mann; Paul A Romitti; Aida Soim; Christina Westfield; Deborah J Fox; Emma Ciafaloni
Journal:  Muscle Nerve       Date:  2022-04-11       Impact factor: 3.852

Review 5.  Can outcomes in Duchenne muscular dystrophy be improved by public reporting of data?

Authors:  Michele A Scully; Valerie A Cwik; Bruce C Marshall; Emma Ciafaloni; Jodi M Wolff; Thomas S Getchius; Robert C Griggs
Journal:  Neurology       Date:  2013-02-05       Impact factor: 9.910

Review 6.  A Review of MD STAR net's Research Contributions to Pediatric-Onset Dystrophinopathy in the United States; 2002-2017.

Authors:  Kashika M Sahay; Tiffany Smith; Kristin M Conway; Paul A Romitti; Molly M Lamb; Jennifer Andrews; Shree Pandya; Joyce Oleszek; Christopher Cunniff; Rodolfo Valdez
Journal:  J Child Neurol       Date:  2018-10-22       Impact factor: 1.987

7.  Characterizing Enrollment in Observational Studies of Duchenne Muscular Dystrophy by Race and Ethnicity.

Authors:  Alison M Barnard; Samuel L Riehl; Rebecca J Willcocks; Glenn A Walter; Amber M Angell; Krista Vandenborne
Journal:  J Neuromuscul Dis       Date:  2020

8.  Genetic modifiers of ambulation in the Cooperative International Neuromuscular Research Group Duchenne Natural History Study.

Authors:  Luca Bello; Akanchha Kesari; Heather Gordish-Dressman; Avital Cnaan; Lauren P Morgenroth; Jaya Punetha; Tina Duong; Erik K Henricson; Elena Pegoraro; Craig M McDonald; Eric P Hoffman
Journal:  Ann Neurol       Date:  2015-03-13       Impact factor: 10.422

9.  Duchenne and Becker Muscular Dystrophies' Prevalence in MD STARnet Surveillance Sites: An Examination of Racial and Ethnic Differences.

Authors:  Yanan Zhang; Joshua R Mann; Katherine A James; Suzanne McDermott; Kristin M Conway; Pangaja Paramsothy; Tiffany Smith; Bo Cai
Journal:  Neuroepidemiology       Date:  2021-01-21       Impact factor: 3.282

10.  Magnetic resonance imaging and spectroscopy assessment of lower extremity skeletal muscles in boys with Duchenne muscular dystrophy: a multicenter cross sectional study.

Authors:  Sean C Forbes; Rebecca J Willcocks; William T Triplett; William D Rooney; Donovan J Lott; Dah-Jyuu Wang; Jim Pollaro; Claudia R Senesac; Michael J Daniels; Richard S Finkel; Barry S Russman; Barry J Byrne; Erika L Finanger; Gihan I Tennekoon; Glenn A Walter; H Lee Sweeney; Krista Vandenborne
Journal:  PLoS One       Date:  2014-09-09       Impact factor: 3.240

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