Surgical and long-term functional outcomes of patients with Duchenne muscular dystrophy following spinal deformity correction

Table 3 Muscular Dystrophy Spine Questionnaire results

Item	Question	Item mean score	SD	Range
	“Last week how difficult was it to…”
1	Get dressed	0	0	0
2	Go to the toilet	0	0	0
3	Lean forward and reach out in front of me	1.06	1.34	0-4
4	Move myself around in bed	0.5	0.8	0-2
5	Write (e.g., a short note and sign it)	1.06	1.69	0-4
6	Do up my zipper	0	0	0
7	Sit up in bed	1.93	1.52	0-4
8	Lift my arms to reach	0.8	1.25	0-4
9	Lift my head when lying down	0.9	1.18	0-4
10	Transfer or move from one position to other	0.4	0.89	0-3
11	Use both hands (e.g., put toothpaste on my toothbrush)	0.8	1.16	0-4
12	Use 1 arm and hand for balance while reaching in front with the other hand	0.75	1.12	0-4
13	Hold a spoon or fork by myself as part of a meal	0.8	1.47	0-4
14	Lift a cup/glass to my mouth by myself to drink	0.68	1.25	0-4
15	Sit comfortably in a good position, in my wheelchair all day	2.06	1.61	0-4
16	Shift weight or change my hip position in my wheelchair	0.68	1.01	0-3
17	Use the computer	2	1.46	0-4
18	Finish brushing my teeth	0.56	1.15	0-4
19	Change my arm position in my arm rests	1.18	1.51	0-4
20	Turn to reach for something	0.5	1.09	0-4
21	Bend forwards to eat	1	1.36	0-4
22	Sit in my chair all day without breaks	2	1.86	0-4
23	Sleep comfortably in bed	2.375	1.6	0-4
24	Sit at the table for meals	3	1.3	0-4
25	Bend forward to drink from a straw	1.43	1.67	1-4
26	Keep balance while sitting in my wheelchair	3	1.31	0-4
27	Look good while sitting in my wheelchair	3	1.46	0-4
	“Last week, how bad was…”
28	Pain in my hips or back last week	3.125	1.2	0-4
29	Me being out of breath last week	2.43	1.8	0-4
	Total score	38.1	25.9	1-100

Items 1-27 are rated 0-4 (0: I can’t do it at all; 1: Very difficult; 2: Moderately difficult; 3: A little difficult; 4: Not difficult); items 28 and 29 are rated 0-4 (0: Extremely bad; 1: Very bad; 2: Bad; 3: A little bit bad; 4: Not a problem). Results of the Muscular Dystrophy Spine Questionnaire (16) completed by patients (n = 16) with Duchenne Muscular Dystrophy at long-term follow-up after surgical correction of scoliosis (mean follow-up: 11 years).