| Title |
The Changing Age of Individuals Seeking Presymptomatic Genetic Testing for Huntington Disease
|
|---|---|
| Published in |
Journal of Genetic Counseling, February 2018
|
| DOI | 10.1007/s10897-018-0233-9 |
| Pubmed ID | |
| Authors |
Melissa A. Holman, John Quillin, Timothy P. York, Claudia M. Testa, Ami R. Rosen, Virginia W. Norris |
| Abstract |
Huntington disease (HD) is a progressive neurodegenerative disorder. Presymptomatic genetic testing allows at-risk individuals to clarify their risk status. Understanding the characteristics and motivations of individuals seeking HD presymptomatic genetic testing better equips genetic counselors and other healthcare professionals to provide comprehensive and personalized care. The aims of this study were to (1) determine whether the average age when individuals seek presymptomatic HD genetic testing has decreased over time, (2) assess motivations for seeking testing, (3) explore whether there is a relationship between age and motivations, and (4) explore genetic counselors' perceptions of the shift in age. Data from the US HD testing centers (N = 4) were analyzed. A small but statistically significant decrease in age of individuals seeking presymptomatic testing was observed (p = 0.045). HD community members (N = 77) were surveyed regarding presymptomatic testing motivations. Younger individuals were more likely than older individuals to cite "To learn whether or not you would develop HD" and "To make choices about further education or a career" compared to older individuals (p < 0.05). Conversely, older individuals more frequently cited "To give children a better idea of their risk" (p < 0.002). Sixteen percent of genetic counselors surveyed (6/37) perceived a change in age of testing. All of these respondents had provided HD testing for ten or more years and anecdotally believed the age at testing has decreased over time. Study results help providers personalize counseling based on patient's age and serve as a starting point for more research into the relationship between age at testing and motivations for testing. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 1 | 50% |
| Unknown | 1 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 2 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 38 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 38 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Bachelor | 6 | 16% |
| Student > Master | 6 | 16% |
| Student > Doctoral Student | 3 | 8% |
| Student > Ph. D. Student | 3 | 8% |
| Student > Postgraduate | 3 | 8% |
| Other | 3 | 8% |
| Unknown | 14 | 37% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 8 | 21% |
| Biochemistry, Genetics and Molecular Biology | 4 | 11% |
| Nursing and Health Professions | 2 | 5% |
| Agricultural and Biological Sciences | 2 | 5% |
| Psychology | 2 | 5% |
| Other | 5 | 13% |
| Unknown | 15 | 39% |
Attention Score in Context
This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 22 February 2018.
All research outputs
#17,930,799
of 23,023,224 outputs
Outputs from Journal of Genetic Counseling
#913
of 1,160 outputs
Outputs of similar age
#240,510
of 331,055 outputs
Outputs of similar age from Journal of Genetic Counseling
#35
of 49 outputs
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