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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