| Title |
The Effect of Predictive Testing in Adult‐Onset Neurodegenerative Diseases on Social and Personal Life
|
|---|---|
| Published in |
Journal of Genetic Counseling, December 2017
|
| DOI | 10.1007/s10897-017-0195-3 |
| Pubmed ID | |
| Authors |
Petra E. Cohn‐Hokke, John C. van Swieten, Yolande A. L. Pijnenburg, Aad Tibben, Hanne Meijers‐Heijboer, Anneke Kievit |
| Abstract |
Follow-up studies on predictive testing for hereditary neurodegenerative diseases mainly focussed on psychological outcomes. We investigated whether the social and personal life of mutation carriers differ negatively from non-carriers and untested at-risk individuals. Asymptomatic individuals (≥ 35 years) who received a genetic test result for Huntington's disease, frontotemporal dementia or Alzheimer's disease more than 2 years before the onset of the study and untested subjects at 50% risk were invited to complete a questionnaire and an additional questionnaire with extra or adjusted items. Of the 283 selected individuals, 115 returned a positive informed consent (response rate 39.6%). Of these, 17 carriers, 30 non-carriers and 27 untested persons (n = 74) fulfilled the criteria and completed both questionnaires. We found no significant differences in employment, financial situation and lifestyle or anxiety and depression between carriers and non-carriers or untested individuals at risk. Carriers were more often single and childless, though these differences were not significant. The findings of this study suggest that the result of predictive testing on adult-onset neurodegenerative diseases does not have a large negative effect on social and personal life, although these observations should be interpreted with caution because of the small number of participants and low response rate. |
X Demographics
The data shown below were collected from the profile of 1 X user 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 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 58 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 58 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 10 | 17% |
| Student > Ph. D. Student | 9 | 16% |
| Student > Bachelor | 6 | 10% |
| Researcher | 5 | 9% |
| Other | 4 | 7% |
| Other | 11 | 19% |
| Unknown | 13 | 22% |
| Readers by discipline | Count | As % |
|---|---|---|
| Psychology | 12 | 21% |
| Medicine and Dentistry | 9 | 16% |
| Biochemistry, Genetics and Molecular Biology | 5 | 9% |
| Nursing and Health Professions | 5 | 9% |
| Neuroscience | 5 | 9% |
| Other | 9 | 16% |
| Unknown | 13 | 22% |
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 23 December 2017.
All research outputs
#20,456,235
of 23,012,811 outputs
Outputs from Journal of Genetic Counseling
#1,032
of 1,160 outputs
Outputs of similar age
#376,323
of 440,666 outputs
Outputs of similar age from Journal of Genetic Counseling
#33
of 38 outputs
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