Bong, Caroline
(2020)
Exploring Factors that Influence Reproductive Decision-Making in Duchenne Muscular Dystrophy Carriers.
Master's Thesis, University of Pittsburgh.
(Unpublished)
Abstract
Background: Duchenne muscular dystrophy (DMD) is an incurable, X-linked recessive genetic disorder characterized by progressive muscle weakness and atrophy. Those affected with DMD typically experience loss of ambulation in teenage years and premature death. Females who are carriers of DMD have a 25% chance of having an affected son with each pregnancy. Little research has been explored regarding the factors that influence the reproductive choices of this population.
Methods: 141 females who are DMD carriers were anonymously surveyed to elicit reproductive decisions and other aspects of their lives. The IRB approved survey was predominantly distributed on social media sites through a specialized neuromuscular contract research organization, TRiNDS, and DMD advocacy groups. The reproductive trends and the factors that influenced their reproductive decisions were analyzed in all 141 respondents using both quantitative and qualitative analyses.
Results: Of the 92 participants who planned to have (additional) children prior to learning their carrier status and who provided clear indications of the reproductive decisions they pursued or plan to pursue, 93.5% (n=86) reported changed reproductive actions after learning their carrier status. Of those, 53.3% (n = 49) indicated they no longer plan to have (additional) children. A family history of DMD (p<0.001), timing when they learned of their DMD carrier status (p=0.002), and the highest level of education completed (p=0.017) were significantly associated with preconception, prenatal, and no reproductive actions taken. The most significant factors influencing females who are DMD carriers who pursued or plan to pursue reproductive actions were having biological children (p<0.001), having children diagnosed with DMD (p<0.001), timing when they learned of their DMD carrier status (p=0.002), and having a family history of DMD (0.012). Understanding of their reproductive options (p=0.014) was also significant for these females.
Conclusions: This study demonstrated that alternative reproductive actions are commonly pursued for females who are DMD carriers after learning their carrier statuses and that certain factors were statistically significant with reproductive choices. Understanding the factors that influence reproductive decision-making has important public health implications as it may provide insight and improved psychosocial interventions for genetic counselors who work with females who are DMD carriers.
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Details
| Item Type: |
University of Pittsburgh ETD
|
| Status: |
Unpublished |
| Creators/Authors: |
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| ETD Committee: |
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| Date: |
30 July 2020 |
| Date Type: |
Publication |
| Defense Date: |
10 April 2020 |
| Approval Date: |
30 July 2020 |
| Submission Date: |
22 March 2020 |
| Access Restriction: |
2 year -- Restrict access to University of Pittsburgh for a period of 2 years. |
| Number of Pages: |
114 |
| Institution: |
University of Pittsburgh |
| Schools and Programs: |
School of Public Health > Genetic Counseling |
| Degree: |
MS - Master of Science |
| Thesis Type: |
Master's Thesis |
| Refereed: |
Yes |
| Uncontrolled Keywords: |
Duchenne muscular dystrophy, DMD, reproductive decisions, carriers |
| Date Deposited: |
30 Jul 2020 18:02 |
| Last Modified: |
01 Jul 2022 05:16 |
| URI: |
http://d-scholarship.pitt.edu/id/eprint/38364 |
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