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Table 4 Disease management

From: Leigh syndrome global patient registry: uniting patients and researchers worldwide

 

Age first used (years)

Disease management device

Na

Disease management device used

Nb

Mean (SD); Mode

Median (Q1, Q3); Min, Max

n (%)

Mobility device

113

81 (71.68)

52

3.5 (5.9); 2

2.0 (1.1, 3.0); 0, 40

NG/JG/G tube

112

55 (49.11)

44

2.9 (3.1); 3

1.8 (1.0, 3.5); 0, 17

Orthotics

106

50 (47.17)

42

2.4 (1.5); 2

2.0 (1.4, 3.0); 1, 8

Tracheotomy

112

30 (26.79)

25

3.6 (1.8); 3

3.0 (2.0, 5.0); 1, 7

Communication device

110

25 (22.73)

20

4.6 (5.1); 3

3.0 (2.5, 5.5); 1, 25

Secretion management

109

22 (20.18)

19

3.1 (2.3); 4

3.0 (1.0, 4.0); 0, 9

CPAPc

23

10 (43.48)

   

BIPAPc

23

9 (39.13)

   

Number of interventions used

     Mean (SD); Mode

114

2.2 (1.6); 1

   

     Median (Q1, Q3); Min, Max

 

2.0 (1.0, 3.0); 0, 7

   
  1. aN = number of participants with a valid response (Yes, No) regarding a specific intervention
  2. bN = number of participants who used an intervention and provided an age when started
  3. cOnly participants with a history of sleep apnea were asked about use of CPAP and BIPAP. Age for the start of CPAP and BIPAP was not collected