Table 4 DSC2U experience measures for caregivers and primary care providers.

From: A randomized controlled trial of an online health tool about Down syndrome

Variable

2-week follow-up surveyb (N = 101)

7-month follow-up surveyc (N = 103)

P value

DSC2U experience measures for caregivers

  Have you viewed, downloaded, or printed the caregiver checklist?

    Yes

101 (100.0%)

–

–

  Did you have any problems viewing, downloading, or printing the caregiver checklist?

    No

91 (90.1%)

–

–

    Yes, somewhat

5 (5.0%)

–

–

    Yes, definitely

5 (5.0%)

–

–

    Missing

0

–

–

  Did the caregiver checklist explain the recommendations in a way that was easy for you to understand?

    No

3 (3.0%)

–

–

    Yes, somewhat

11 (10.9%)

–

–

    Yes, definitely

87 (86.1%)

–

–

    Missing

0

–

–

  Did you use the links to information that were included in the caregiver checklist?

    No

24 (23.8%)

–

–

    Yes, somewhat

39 (38.6%)

–

–

    Yes, definitely

38 (37.6%)

–

–

    Missing

0

–

–

  Did you discuss the caregiver checklist or any of the recommendations with [name]?

    No

58 (57.4%)

–

–

    Yes, somewhat

19 (18.8%)

–

–

    Yes, definitely

24 (23.8%)

–

–

    Missing

0

–

–

  Overall rating of caregiver checklistd

    0

1 (1.0%)

0 (0.0%)

0.945

    2

1 (1.0%)

0 (0.0%)

–

    3

0 (0.0%)

1 (1.0%)

–

    4

3 (3.0%)

4 (3.9%)

–

    5

6 (5.9%)

9 (8.7%)

–

    6

8 (7.9%)

11 (10.7%)

–

    7

19 (18.8%)

15 (14.6%)

–

    8

27 (26.7%)

25 (24.3%)

–

    9

18 (17.8%)

13 (12.6%)

–

    10

18 (17.8%)

25 (24.3%)

–

    Mean ± SD (range)

7.75 ± 1.84 (0.00, 10.0)

7.79 ± 1.82 (3.00, 10.0)

0.895

  Would you recommend the caregiver checklist to another caregiver?

    No

0 (0.0%)

1 (1.0%)

0.195

    Yes, somewhat

17 (16.8%)

26 (25.2%)

–

    Yes, definitely

84 (83.2%)

76 (73.8%)

–

  How often would you reuse the caregiver checklist?

    More than 5 times per year

18 (17.8%)

8 (7.8%)

0.004a

    2–5 times per year

59 (58.4%)

55 (53.4%)

–

    Once per year

23 (22.8%)

34 (33.0%)

–

    Never

1 (1.0%)

6 (5.8%)

–

  How often would you recomplete the caregiver checklist?

    More than 5 times per year

3 (3.0%)

6 (5.8%)

0.495

    2–5 times per year

34 (33.7%)

38 (36.9%)

–

    Once per year

60 (59.4%)

52 (50.5%)

–

    Never

4 (4.0%)

7 (6.8%)

–

  Were you able to view or download the primary care plan that was created for your primary care provider?

    No

10 (9.9%)

–

–

    Yes

91 (90.1%)

–

–

    Missing

0

–

–

  Did you give the primary care plan to the PCP before or during visit?

    No

40 (39.6%)

–

–

    Yes, before the visit and at the visit

7 (6.9%)

–

–

    Yes, at the visit

44 (43.6%)

–

–

    Yes, before the visit

10 (9.9%)

–

–

    Missing

0

–

–

  Did you give a copy of the primary care plan to the PCP after the visit?

    No

21 (84.0%)

–

–

    Yes

4 (16.0%)

–

–

    Missing

76 [15]e

–

–

  Why did you not give a copy of the primary care plan before or during the visit?

    I chose not to

8 (32.0%)

–

–

    I forgot to

10 (40.0%)

–

–

    I experienced technical difficulties

3 (12.0%)

–

–

    Other

4 (16.0%)

–

–

    Missing

76 [15]e

–

–

  Did your primary care provider review the primary care plan and discuss it with you at [name]’s visit?

    No

8 (13.1%)

–

–

    Yes, somewhat

18 (29.5%)

–

–

    Yes, definitely

35 (57.4%)

–

–

    Missing

40 [40]e

–

–

  Did your primary care provider seem interested in the information in the primary care plan?

    No

4 (6.6%)

–

–

    Yes, somewhat

20 (32.8%)

–

–

    Yes, definitely

37 (60.7%)

–

–

    Missing

40 [40]e

–

–

  Did your primary care provider seem to agree with the recommendations in the primary care plan?

    Not sure

7 (11.5%)

–

–

    No

1 (1.6%)

–

–

    Yes, somewhat

21 (34.4%)

–

–

    Yes, definitely

32 (52.5%)

–

–

    Missing

40 [40]e

–

–

DSC2U experience measures for primary care provider

Variable

2-week follow-up surveyb (N = 94)f

 Did [name]’s caregiver give you a copy of the primary care plan before and/or during the wellness visit?

    No

55 (60.4%)

    Yes, at the visit

25 (27.5%)

    Yes, before the visit

11 (12.1%)

    Missing

3

 Did you discuss this primary care plan or any of its recommendations with the caregivers?g

    Yes, somewhat

9 (25.0%)

    Yes, definitely

27 (75.0%)

    Missing

58 [3]e

 Were you interested in any of the information in this primary care plan?g

    Yes, somewhat

10 (28.6%)

    Yes, definitely

25 (71.4%)

    Missing

59 [4]e

 Did you agree with the recommendations in the primary care plan?

    No

1 (2.8%)

    Yes, somewhat

13 (36.1%)

    Yes, definitely

22 (61.1%)

    Missing

58 [3]e

 How would you rate the primary care plan?h

    3

1 (2.9%)

    4

1 (2.9%)

    5

3 (8.6%)

   6

3 (8.6%)

    7

5 (14.3%)

    8

6 (17.1%)

    9

10 (28.6%)

    10

6 (17.1%)

    Missing

59

    Mean ± SD (range)

7.80 ± 1.86 (3.00, 10.0)

  1. DSC2U Down Syndrome Clinic to You, PCP primary care provider, SD Standard deviation.
  2. aP value < 0.01.
  3. bThe 2-week follow-up survey included the Experience Survey that was completed by caregivers, 2 weeks after the patient’s wellness visit with PCP.
  4. cThe 7-month follow-up survey included the Health Care Outcomes Survey that was completed by caregivers, 7 months after the patient’s wellness visit with PCP.
  5. dThe overall rating of caregiver checklist is scaled from 0 to 10 with 0 meaning “least helpful” and 10 meaning “most helpful”.
  6. eTotal missing includes the participants who were not asked the question because of the survey branching logic. Number in brackets is number of participants who were presented with the question but chose not to respond. Percentages for each response were calculated using total respondents in the denominator.
  7. fN = 94 here because the total number of PCPs, N = 114, were presented with the opportunity to complete the PCP survey but N = 20 did not complete it.
  8. gThese variables were scaled with “No”, “Yes, somewhat”, and “Yes, definitely”. The answers not represented (e.g., No) had zero responses.
  9. hRating the primary care plan was scaled from 0 to 10 with 0 meaning the “least helpful” and 10 meaning the “most helpful”. The numbers not represented here (e.g., 0, 1, 2) had zero responses.
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