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Table 1 Comparison of eligible and responding families from the MD STARnet

From: Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources

Characteristica

Eligible Families (n = 460)b

Responding Families (n = 209)b

χ 2 prob.

No.

Percent

No.

Percent

Case Status

    

0.59

 Definite

448

97.4

205

98.1

 

 Probable

12

2.6

4

1.9

 

Site

 Arizona

119

25.9

52

24.9

0.21

 Colorado

101

22.0

36

17.2

 

 Georgia

119

25.9

49

23.4

 

 Iowa

69

15.0

45

21.5

 

 New York

52

11.3

27

12.9

 

Child Year of Birth

    

0.66

 1982–1985

28

6.1

16

7.7

 

 1986–1990

82

17.8

39

18.7

 

 1991–1995

120

26.1

64

30.6

 

 1996–2000

124

27.0

47

22.5

 

 2001–2005

81

17.6

32

15.3

 

  ≥ 2006

25

5.4

11

5.3

 

Caregiver Relationship

  

0.42

 Biologic Mother

405

88.0

193

92.4

 

 Biologic Father

23

5.0

6

2.9

 

 Adoptive

14

3.0

6

2.9

 

 Foster

2

0.4

1

0.5

 

 Other

16

3.5

3

1.4

 

Maternal Age at Questionnaire Completionc

    

0.75

  < 30

14

4.8

4

3.0

 

 30–34

32

11.0

15

11.1

 

 35–39

58

19.9

22

16.3

 

 40–44

71

24.4

33

24.4

 

 45–49

67

23.0

39

28.9

 

  ≥ 50

49

16.8

22

16.3

 

 Missing

(169)

 

(74)

  

Maternal Race/Ethnicity

    

0.14

 Non-Hispanic Black

26

6.7

9

5.1

 

 Non-Hispanic White

270

69.1

139

78.5

 

 Hispanic or Latino/Latina

78

20.0

24

13.6

 

 Other5

17

4.3

5

2.8

 

 Missing

(69)

 

(32)

  

Maternal Education

    

0.04

 12th grade or less, no diploma

81

24.1

22

14.0

 

 High School graduate or GED

103

30.7

46

29.3

 

 Some college or 2-year degree

73

21.7

41

26.1

 

 Bachelor’s degree or higher

79

23.5

48

30.6

 

 Missing

(124)

 

(52)

  

Paternal Age at Questionnaire Completionc

    

0.80

  < 30

5

2.0

1

0.9

 

 30–34

20

8.1

10

8.6

 

 35–39

43

17.5

16

13.7

 

 40–44

51

20.7

22

18.8

 

 45–49

54

22.0

31

26.5

 

  ≥ 50

73

29.7

37

31.6

 

 Missing

(214)

 

(92)

  

Paternal Race/Ethnicity

    

0.05

 Non-Hispanic Black

22

6.5

8

5.1

 

 Non-Hispanic White

247

72.9

130

81.8

 

 Hispanic or Latino/Latina

59

17.4

21

13.2

 

 Otherd

11

3.2

0

0.0

 

 Missing

(121)

 

(50)

  

Paternal Education

    

0.23

 12th grade or less, no diploma

47

16.9

13

9.9

 

 High School graduate or GED

89

32.0

43

32.6

 

 Some college or 2-year degree

69

24.8

33

25.0

 

 Bachelor’s degree or higher

73

26.3

43

32.6

 

 Missing

(182)

 

(77)

  
  1. No. number, MD STARnet Muscular Dystrophy Surveillance, Tracking, and Research Network. Missing values were not included in chi-square analyses
  2. aCharacteristics, for example, site, were obtained from the latest surveillance data (v8). Such values may differ from those recorded at questionnaire completion. Maternal and paternal race/ethnicity information was obtained from the respective calculated variables
  3. bEligible = Families with a case classification of “probable” or “definite”, excluding those from Hawaii, who were eligible for the Caregiver questionnaire. Respondent = completed questionnaire received between August 2011 and February 2012
  4. cMaternal and paternal ages at questionnaire completion for non-respondents were calculated as the “mid-point year from completed questionnaires” (2012) – “year of birth”
  5. dOther race/ethnicity includes Asian or Hawaiian or Pacific Islander, Native American or American Indian or Alaska Native, multiple and other unclassified types, excluding unknown