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Exploring Factors that Influence Reproductive Decision-Making in Duchenne Muscular Dystrophy Carriers

Bong, Caroline (2020) Exploring Factors that Influence Reproductive Decision-Making in Duchenne Muscular Dystrophy Carriers. Master's Thesis, University of Pittsburgh. (Unpublished)

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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:
CreatorsEmailPitt UsernameORCID
Bong, Carolineckb24@pitt.educkb24
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairMorgenroth, Laurenlmorgenroth@trinds.com
Committee MemberGrubs, Robinrgrubs@pitt.edu
Committee MemberShaffer, Johnjohn.r.shaffer@pitt.edu
Committee MemberBendixen, RoxannaBENDIXEN@pitt.edu
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: Graduate 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: 30 Jul 2020 18:02
URI: http://d-scholarship.pitt.edu/id/eprint/38364

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