Table 10, Baseline Characteristics of Randomized Trial Individual Parent Participants (Aim 3 – Trial) as Reported to ClinicalTrials.gov - Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders

	All respondents (n = 52)	Enhanced report (n = 28)	Usual care (n = 24)
Variant result^a
Causal variant found	7	13.5	3	10.7	4	16.7
No causal variant found	45	86.5	25	89.3	20	83.3
Sex
Male	23	44.2	12	42.9	11	45.8
Female	29	55.8	16	57.1	13	54.2
Race
White	49	96.1	26	92.9	23	100.0
Other	2	3.9	2	7.1	0	0.0
Missing data	1	1.9	0	0.0	1	4.2
Ethnicity
Hispanic	2	3.9	2	7.1	0	0.0
Non-Hispanic	49	96.1	26	92.9	23	100.0
Total	51		28		23
Missing data	1	1.9	0	0.0	1	4.2
Marital status
Now married	45	88.2	24	85.7	21	91.3
Divorced	3	5.9	1	3.6	2	8.7
Separated	2	3.9	2	7.1	0	0.0
Never married	1	2.0	1	3.6	0	0.0
Missing data	1	1.9	0	0.0	1	4.2
Education
Some HS (grades 9-12)	4	7.7	0	0.0	4	16.7
HS graduate or GED	10	19.2	7	25.0	3	12.5
Post-HS training other than college	7	13.5	5	17.9	2	8.3
Some college	13	25.0	6	21.4	7	29.2
Bachelor's degree	9	17.3	6	21.4	3	12.5
Master's degree	8	15.4	4	14.3	4	16.7
Doctor/professional degree	1	1.9	0	0.0	1	4.2
Income
<$15 000	1	2.0	1	3.8	0	0.0
$15 000-$29 999	4	8.0	1	3.8	3	12.5
$30 000-$44 999	6	12.0	4	15.4	2	8.3
$45 000-$59 999	8	16.0	2	7.7	6	25.0
$60 000-$89 999	18	36.0	14	53.8	4	16.7
$90 000-$149 999	5	10.0	2	7.7	3	12.5
$150 000-$199 999	5	10.0	2	7.7	3	12.5
$200 000 or above	3	6.0	0	0.0	3	12.5
Missing data	2	3.8	2	7.1	0	0.0
Health literacy and numeracy
How confident are you filling out forms by yourself?
Never	1	2.0	0	0.0	1	4.2
Occasionally	6	11.8	4	14.8	2	8.3
Sometimes	9	17.6	4	14.8	5	20.8
Often	6	11.8	4	14.8	2	8.3
Always	29	56.9	15	55.6	14	58.3
Missing data	1	1.9	1	3.6	0	0.0
How easy or hard do you find it to understand medical statistics?
Very easy	11	21.6	6	22.2	5	20.8
Easy	25	49.0	12	44.4	13	54.2
Hard	15	29.4	9	33.3	6	25.0
Very hard	0	0.0	0	0.0	0	0.0
Missing data	1	1.9	1	3.6	0	0.0
How often have you accessed child's health information online through the MyGeisinger website or app in the past 12 mo?
None	29	58.0	17	63.0	12	52.2
1-2 times	4	8.0	2	7.4	2	8.7
3-5 times	8	16.0	3	11.1	5	21.7
6-9 times	2	4.0	2	7.4	0	0.0
10 or more times	7	14.0	3	11.1	4	17.4
Missing data	2	3.8	1	3.6	1	4.2

All respondents (n = 52)

Enhanced report (n = 28)

Usual care (n = 24)

No.

Variant result^a

Causal variant found

13.5

10.7

16.7

No causal variant found

86.5

89.3

83.3

Sex

Male

44.2

42.9

45.8

Female

55.8

57.1

54.2

Race

White

96.1

92.9

100.0

Other

3.9

7.1

0.0

Missing data

1.9

0.0

4.2

Ethnicity

Hispanic

3.9

7.1

0.0

Non-Hispanic

96.1

92.9

100.0

Total

Missing data

1.9

0.0

4.2

Marital status

Now married

88.2

85.7

91.3

Divorced

5.9

3.6

8.7

Separated

3.9

7.1

0.0

Never married

2.0

3.6

0.0

Missing data

1.9

0.0

4.2

Education

Some HS (grades 9-12)

7.7

0.0

16.7

HS graduate or GED

19.2

25.0

12.5

Post-HS training other than college

13.5

17.9

8.3

Some college

25.0

21.4

29.2

Bachelor's degree

17.3

21.4

12.5

Master's degree

15.4

14.3

16.7

Doctor/professional degree

1.9

0.0

4.2

Income

<$15 000

2.0

3.8

0.0

$15 000-$29 999

8.0

3.8

12.5

$30 000-$44 999

12.0

15.4

8.3

$45 000-$59 999

16.0

7.7

25.0

$60 000-$89 999

36.0

53.8

16.7

$90 000-$149 999

10.0

7.7

12.5

$150 000-$199 999

10.0

7.7

12.5

$200 000 or above

6.0

0.0

12.5

Missing data

3.8

7.1

0.0

Health literacy and numeracy

How confident are you filling out forms by yourself?

Never

2.0

0.0

4.2

Occasionally

11.8

14.8

8.3

Sometimes

17.6

14.8

20.8

Often

11.8

14.8

8.3

Always

56.9

55.6

58.3

Missing data

1.9

3.6

0.0

How easy or hard do you find it to understand medical statistics?

Very easy

21.6

22.2

20.8

Easy

49.0

44.4

54.2

Hard

29.4

33.3

25.0

Very hard

0.0

Missing data

1.9

3.6

0.0

How often have you accessed child's health information online through the MyGeisinger website or app in the past 12 mo?

None

58.0

63.0

52.2

1-2 times

8.0

7.4

8.7

3-5 times

16.0

11.1

21.7

6-9 times

4.0

7.4

0.0

10 or more times

14.0

11.1

17.4

Missing data

3.8

3.6

4.2

From: Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders

Cover of Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders

Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders [Internet].

Williams M, Williams J, Rahm A, et al.

Washington (DC): Patient-Centered Outcomes Research Institute (PCORI); 2018 Sep.

This book is distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License which permits noncommercial use and distribution provided the original author(s) and source are credited. (See https://creativecommons.org/licenses/by-nc-nd/4.0/

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Table 10Baseline Characteristics of Randomized Trial Individual Parent Participants (Aim 3 – Trial) as Reported to ClinicalTrials.gov