Genetic Counseling Program

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Descriptive Life Experiences of Adults with Myelomeningocele   By Kelly McMahon

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.

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