Ahimaz Study: Genetic Counseling Would Benefit Parkinson Disease Caregivers
A study “illustrates the benefits of a healthcare service, such as genetic counseling, that focuses on education, referrals and psychological assessment for both (Parkinson Disease) patient and family caregiver,” according to a poster presentation abstract by Priyanka Ahimaz, an Arcadia University Genetic Counseling student, at the National Society of Genetic Counselors’ (NSGC). Assessment of Attitudes Toward Genetic Counseling for Family Members of Patients with Parkinson Disease was authored by P. Ahimaz1, L. Conway1, E. McCarty Wood2, D. Falcone2. (1Arcadia University, 2 University of Pennsylvania.)
“Parkinson Disease (PD) is a progressive neurodegenerative disorder that can impair movement and cognitive function. Approximately 10% of all PD cases have an identifiable genetic cause and relatives of affected individuals have an increased risk of developing the condition. Family members often act as caregivers to individuals with PD, a role that may be demanding and have emotional, physical and psychiatric health consequences.
“To determine whether caregivers could benefit from genetic counseling, sixteen family caregivers of patients with PD completed a semi-structured questionnaire. The questionnaire assessed knowledge of the disease, which aspects of the disease were considered most challenging, and which resources caregivers used for support and information. 62.5% (n=10) felt that they had been inadequately informed by their healthcare provider about the psychological impact of being a caregiver, as well as the hereditary risks and possible causes of PD.
“When comparing knowledge scores, the mean score percentage for genetics related questions was 51% while the mean score percentage for PD related questions was 69.4%. One of the most frequently reported concerns among participants was risk of other family members developing PD (68.7%, n=11), and the most challenging aspects of PD to deal with were erratic sleep pattern and tremors (75%, n=.12).
“Most participants (81.2%, n=13) felt that genetic counseling would be helpful to family caregivers while 68.7% (n=11) said they would use the service if it was available to them. This study illustrates the benefits of a healthcare service, such as genetic counseling, that focuses on education, referrals and psychological assessment for both patient and family caregiver.”