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Genetic Testing Preferences of Individuals in Families with Essential Tremor Cover

Genetic Testing Preferences of Individuals in Families with Essential Tremor

Open Access
|Mar 2018

Figures & Tables

Table 1

Demographic and Clinical Characteristics of 105 Participants

CharacteristicData
Age (years)59.3±16.1
Gender
 Male46 (43.8)
 Female59 (56.2)
Religion
 Catholic28 (26.7)
 Protestant26 (24.8)
 Jewish15 (14.3)
 Other15 (14.3)
 None21 (20.0)
Education level
 At least a bachelor’s degree68 (64.7)
 Less than a bachelor’s degree37 (35.3)
Marital status
 Married70 (66.7)
 Widowed10 (9.5)
 Divorced14 (13.3)
 Never married11 (10.5)
Children
 None19 (18.1)
 Yes (biological, step, and/or adopted)86 (81.9)1
  Biological83 (79)
  Step11 (10.5)
  Adopted9 (8.6)
Family history of ET
  “I am the only person with essential tremor”1 (1.0)
  “Yes, myself and one other person”3 (2.9)
  “Yes myself and two or more people”73 (69.5)
  “Yes my family but not me”28 (26.7)
Tremor duration (years)30.5 ± 20.8
Form of ET treatment
  “I do not treat it in any way”42 (40.0)
  “I take medication when needed”5 (4.8)
  “I take medication daily”25 (23.8)
  “I had surgery to treat it and take medication”5 (4.8)
  “I do not have ET” (unaffected relatives)28 (26.7)

Abbreviation: ET, Essential Tremor.

All values are mean ± standard deviation or number (percentage).

1 Some individuals have more than one type (e.g., biological and adopted).

Table 2

“Would you be Interested in Genetic Testing for ET if such a Test were Available”

YesNoNot Surep (Chi-Square Test)
Entire sample90 (85.7)2 (1.9)13 (12.4)
 GenderMale40 (87.0)1 (2.2)5 (4.8)0.911
Female50 (84.7)1 (1.7)8 (13.6)
Participant typeProband32 (94.1)1 (2.9)1 (2.9)0.082
0.043
Affected relative38 (88.4)0 (0.0)5 (11.6)
Unaffected relative20 (71.4)1 (3.6)7 (25.0)

All values represent number (row percentage).

1 There was no difference between gender and desire for genetic testing.

2 Comparing probands, affected relatives, and unaffected relatives.

3 Comparing affected (probands + affected relatives) and unaffected relatives.

tre-08-545-7522-1-g001.jpg
Figure 1

Genetic Testing Preferences of Affecteds in Four Scenarios

tre-08-545-7522-1-g002.jpg
Figure 2

Genetic Testing Preferences of Unaffecteds in Four Scenarios

Table 3

Twenty-one Hypothetical Factors that Might Influence a Participant’s Decision to Undergo Genetic Testing

SignificanceMeanCategory
The results could improve your health or health care0.000*1.6711
Learn that changing your behavior could reduce symptoms0.000*1.6511
Learn if ET is caused by a specific gene0.000*1.5811
Determine if your children are at risk0.000*1.5411
Learn some of your genetic information0.000*1.5011
The test is highly accurate0.000*1.432
Your treatment options for ET0.000*1.394
The test is affordable0.000*1.302
Having test results to share with your doctor0.000*1.174
Your decision to opt for surgery to treat ET0.000*0.584
An effect on your future plans0.0020.503
Your family’s reaction to genetic testing0.000*0.443
Having your blood drawn for testing0.000*0.354
Your decision about having children0.000*0.253
Impact your career0.0420.232
Your religious, cultural, and/or spiritual beliefs0.0040.233
Your decision about marriage0.000*0.203
Affect your insurance0.411–0.1122
Impact your privacy0.054–0.2222
The test is less accurate0.000*–0.5122
The test is not affordable0.000*–1.0122

Abbreviation: ET, Essential Tremor.

* Statistically significant, p < 0.0024.

1 Highest ranked positive effect factors.

2 Negative effect factors.

Table 4

Demographic and Clinical Predictors Influencing Desire to Undergo Genetic Testing

Predictor Factorbetap
Gender0.1820.78
Religion0.0001.00
Education0.0230.90
Marital status0.9410.20
Diagnostic status (affected vs. unaffected)–1.3860.0231
Tremor duration0.0150.51
Biological children–0.3750.59
Age0.0100.65

1 Statistically significant.

These analyses utilized generalized estimating equations.

DOI: https://doi.org/10.5334/tohm.402 | Journal eISSN: 2160-8288
Language: English
Submitted on: Feb 7, 2018
Accepted on: Mar 2, 2018
Published on: Mar 27, 2018
Published by: Columbia University Libraries/Information Services
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year

© 2018 Kelly V. Naranjo, Jemin Park, Karen P. Chen, Nora Hernandez, Lorraine N. Clark, Ruth Ottman, Elan D. Louis, published by Columbia University Libraries/Information Services
This work is licensed under the Creative Commons License.