Kelly McMahon
CAPSTONE
Capstone Project Committee: Heidi Cope, M.S., CGC, Sonja Eubanks, M.S., CGC, Sat Gupta, Ph.D. (Statistical Consultant), Elizabeth Heise, M.S., CGC
Background: This study evaluated the life experiences of 70 adults age 25 years and older with myelomeningocele (MMC). While many studies have looked at the impact of MMC on the lives of children and young adults, little is known about the impact of MMC on the life experiences of adults. To our knowledge, this is the first descriptive study on adults of this age group with MMC.
Methods: A multiple-choice questionnaire along with open-ended questions was used. The questionnaire consisted of a previously validated quality of life survey (LISAT-11) and additional detailed items eliciting specific information about education, employment, relationships, and reproduction.
Results: Participants were 25-80 years old (mean age 37). The majority of participants were white, female, had hydrocephalus, bowel and bladder incontinence, and required assistive devices or a wheelchair for mobility. Most were in a typical education setting and completed an education level beyond high school. Half of participants were currently employed in paid positions, though salaries were below average incomes in the general population. Most participants required assistance with living and have never had a serious partner or spouse. Twelve participants had biologic children. There was a relatively high self-reported quality of life. Self-care and family life were rated the highest in terms of satisfaction and partnership relationships, financial situation, and vocational situation were rated the lowest. Correlations were made between participant characteristics and satisfaction or dissatisfaction with quality of life domains.
Conclusion: The results of this study provide information for parents and health care providers about long-term outcomes for individuals with MMC. This information is important for parents and individuals with MMC in developing realistic goals as they transition into adulthood.
Since Graduation
Following graduation in 2011, Kelly began her career as a prenatal genetic counselor at a private maternal fetal medicine practice in Fort Myers, Florida. In June 2014, Kelly moved back to her hometown of Rochester, NY and began a joint role as a clinical genetic counselor in both the pediatric Neurogenetics and hereditary cancer programs at the University of Rochester Medical Center. Currently Kelly is working full-time in the Department of Neurology as a clinical genetic counselor and is primarily involved in the pediatric Neurogenetics program.
Kelly married her husband (William) in 2016 and they have two children, a 3 year old boy (William) and a 7 month old boy (Charles), as well as a 10 year old French bulldog (Axel).