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Table 1 Details of the caregivers and patients’ responses in the 4 focus groups

From: Content validity and clinical meaningfulness of the HFMSE in spinal muscular atrophy

HMFSE Item HMFSE activities Answers Group 1 Group 2 Group 3 Group 4
1 Able to sit on chair or with legs off bed with or without hand support Sitting on normal school chair or public spaces (stools in restaurant) ● ● ● ●
Sitting on toilet ● ●   ●
Sitting in car    ●  
Independence out of the house ●    ●
Dress by herself/himself   ●   
2 Able to sit on floor cross legged or legs stretched in front Play on floor with siblings ● ● ● ●
Sit on lounge chair, deck-chair   ●   ●
Picnic    ● ●
Travel with less equipment ●    
Inclusion in activities   ●   
3 Able to bring hands to face at eye level Wash face ● ● ● ●
Brush and style ● ● ● ●
Eat ●   ●  
Put on eye glasses ● ●   ●
Answer telephone    ●  
Blow nose ●    
4 Able to bring hands to head Scratch head ● ● ● ●
Wash, brush, style hair   ● ● ●
Put on hat ● ●   ●
Dress upper body ●   ●  
5 Roll to side Sleep by myself in my own room   ● ●  
Caregiver does not have to wake up to turn him/her ● ●   ●
Help during dressing lying down   ● ●  
Not having to turn head to see ●    
6-7-8-9 Roll Play ● ●   
Sleep well   ● ●  
Sunbathe   ● ●  
Experience space ●    ●
Reach for something at sides when lying down   ●   ●
10 Able to lye down from sitting Independence: lye down and rest when tired ● ● ● ●
Fun movement when falling ● ●   
Rest on the back    ●  
Safety: Fall in a controlled way (avoid head trauma) ●    
11 Able to raise head when lying prone Turn head react to stimulus, visual exploration of surroundings ● ● ●  
Read a book ●   ● ●
Not be afraid of choking   ●   
Watch TV   ●   ●
On beach not get sand in face ●    
12-13 Able to prop on forearms or extend arms Read a book ● ● ●  
Watch TV   ● ● ●
Stretch back ●    
Sun bathe    ●  
14 Able to sit up from lying No need for assistant ● ● ●  
Wake up and not have to wait for someone to sit me up ● ● ● ●
Independence ● ●   
Sit up and drink at night ●    ●
15 Able to four-point kneel Play like an animal in school ●   ● ●
Hiding     ●
Be able to fit under small spaces     ●
16 Able to crawl Move around ● ● ● ●
Experience space   ● ●  
Go get objects ● ●   
Play on floor    ● ●
17 Lift head from supine Change head position ● ● ●  
Drink at night    ● ●
Read ●    
Watch TV   ●   
Check the clock or alarm     ●
18 Stand with support Use toilet standing (boy) ●   ● ●
Use full length mirror, perceive body dimensions and proportions ● ●   
Shower properly ●    
Climb in car    ●  
Use kitchen burners, cook   ●   
19 Stand without support Public spaces: wait for bus, stand in cue   ●   
Cook    ●  
Use normal sink ●    
Dress    ●  
Reach something on a shelf     ●
20 Able to walk Freedom ● ● ●  
Go where and when you please ● ● ●  
Get to places ● ● ●  
Not to have to rely on wheelchair batteries    ●  
21-22 Able to flex hip from supine Dress (pants, socks) ● ● ● ●
Scratch legs, kill mosquito ● ●   
Change position    ●  
23-24-25-26 Able to half kneel Pick up object on floor   ● ●  
Tie shoe laces ● ●   
Put away object on low surfaces ●    
Pet a dog   ●   
Play    ●  
Make a proposal     ●
Kneel in church     ●
Talk with a kid     ●
27 Able to go from standing to sitting Not get hurt when falling or not fall in an embarrassing way ●   ●  
Sit on grass or sand ● ●   ●
Pet a dog    ●  
Sit beside a friend in same position/play on floor ●   ●  
Pick up something from floor   ●   ●
28 Able to squat Sit when needed ●   ●  
Pick up objects on floor   ● ● ●
Pee ●    ●
Tie shoes    ●  
Pull up trousers ●    
29 Able to jump Have fun, play ● ● ● ●
Dance, gymnastics   ● ●  
Avoid obstacles ● ●   ●
Normality ●   ●  
Go to friends’ home regardless of where they live ●   ● ●
Stay and live in my own home   ●   
30-31-32-33 Go up and down stairs Absence of barriers ● ● ● ●
Normality ● ●   
Go to friends’ home regardless of where they live ● ●   ●
Stay and live in my own home    ●  
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BMC Neurology

ISSN: 1471-2377

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