172609 Parental attitudes toward and experiences with infant screening for Duchenne muscular dystrophy

Tuesday, October 28, 2008

Alissa Cyrus, MPH , Ncbddd, Centers for Disease Control and Prevention, Atlanta, GA
Sharon Quary, MS , Division of Medical Genetics, Department of Human Genetics, Emory University, Decatur, GA
Julie Kable, PhD , Department of Pediatrics, Emory University, Atlanta, GA
Natalie Street, MS , Centers for Disease Control and Prevention, Atlanta, GA
Chunli Yu, MD , Division of Medical Genetics, Department of Human Genetics, Emory University, Decatur, GA
Leonard Arthur , Division of Medical Genetics, Department of Human Genetics, Emory University, Decatur, GA
Bradford Coffee, PhD , Division of Medical Genetics, Department of Human Genetics, Emory University, Decatur, GA
Paul Fernhoff, MD , Division of Medical Genetics, Department of Human Genetics, Emory University, Decatur, GA
Duchenne muscular dystrophy (DMD) is a degenerative muscle disorder affecting approximately 1 in 3500 male births. Diagnosis typically occurs between 3 and 6 years of age. Infant screening for DMD provides an opportunity for early diagnosis and initiation of treatment while allowing parents time to understand its risks and benefits.

From February to September 2007, metro-Atlanta pediatric offices participated in a pilot infant screening program where parents of boys aged 6 to 15 months were offered an optional screening test for DMD. Informed consent was obtained and blood spots were collected and analyzed to detect elevated levels of creatine kinase (CK). Participating parents completed a survey to evaluate their attitudes toward, experience with, and understanding of the screening process (n=138). Parents declining screening for their sons completed a survey to evaluate their reasons against screening for DMD (n=22).

A total of 258 parents consented and 69 declined; all CK results were normal. Common reasons parents gave for participating in the screening program were “I just wanted to know”, “If he had DMD, I wanted to get treatment for my son earlier”, and “I wanted to rule it out to have one less thing to worry about”. Reasons parents gave for declining participation include “My child is healthy”, “No other family member has DMD”, and “There is no real benefit of knowing right now”.

Parental attitudes and experiences regarding screening will be presented.

Learning Objectives:
1. Identify the three most common reasons for and against screening for Duchenne muscular dystrophy (DMD) as reported by parents. 2. Describe the attitudes of parents toward screening for DMD. 3. Assess the relationship between parental knowledge of DMD and attitude toward DMD screening.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have been involved in both the implementation and data analysis of the study being presented.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

See more of: MCH Infant and Child Health Poster Session
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