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Table 5 Caregiver impression of change

From: Top caregiver concerns in Rett syndrome and related disorders: data from the US natural history study

Caregiver impression of change

RTT

(n = 1282)

MDS

(n = 163)

CDD

(n = 147)

FS

(n = 141)

Unchanged

51.6%

(662/1282)

32.5%

(53/163)

38.1%

(56/147)

43.3%

(61/141)

Improved

27.2%

(349/1282)

47.2%

(77/163)

48.0%

(72/147)

44.0%

(62/141)

Reason for improvement: communication

36.7%

(128/349)

29.9%

(23/77)

29.2%

(21/72)

17.7%

(11/62)

First caregiver concern: communication

29.5%

(103/349)

41.6%

(32/77)

33.3%

(24/72)

27.4%

(17/62)

First caregiver concern: seizures

7.7%

(27/349)

10.4%

(8/77)

47.2%

(34/72)

17.7%

(11/62)

Worse

21.1%

(271/1282)

20.2%

(33/163)

12.9%

(19/147)

12.8%

(18/141)

Reason for worsening: seizures

19.2%

(52/271)

42.4%

(14/33)

63.2%

(12/19)

22.2%

(4/18)

First caregiver concern: seizures

21.4%

(58/271)

54.5%

(18/33)

78.9%

(15/19)

38.9%

(7/18)

First caregiver concern: communication

18.1%

(49/271)

3.0%

(1/33)

5.3%

(1/19)

5.6%

(1/18)

  1. Legend: The number of visits evaluated (in parentheses) for the different disorders is listed across the top. The percentage of visits the caregiver noted an impression of change as unchanged, improved, or worse is noted for each disorder (number of visits with caregiver impression/total number of visits). For visits the caregiver impression was improved or worse, the top reason for the impression is stated, with the percentage (number of visits with the top reason/total number visits with stated impression). Similarly, the percentage of visits in which the caregiver indicated the top concern was seizures or communication is shown for visits the caregiver impression was improved or worse is presented (number of visits with first concern/total number of visits with stated impression)