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Table 2 Sample quotes from qualitative interviews regarding the relevance of the MFM32 items to daily life

From: Understanding the relationship between the 32-item motor function measure and daily activities from an individual with spinal muscular atrophy and their caregivers’ perspective: a two-part study

MFM32 item

Participant characteristics

Quote

Item 9 (sitting on the floor, maintains position whilst keeping contact between hands; D2)

Caregiver of a 3-year-old individual with Type 2 SMA

… you’re worried about her cracking her head or injuring herself in some way … her being able to sit safely allows her more independence to be able to do something on her own and also it, it’s safety regards just her sitting for any kind of daily task.”

Item 10 (sitting on the floor, leaning forward to touch a ball; D2)

22-year-old individual with non-ambulant Type 3 SMA

“So basically anything that I need to reach … I work in a research lab, and so I reach like different … equipment in the lab and just reaching my computer to do like daily work stuff … feeding myself.”

Item 11 (stands up from sitting on the floor; D1)

Caregiver of a 9-year-old individual with Type 2 SMA

“If he could stand up from seated, that would help at school. That would help at home. Just being able to be on the floor to pick something up, to play with our dogs … any of those would be super helpful.”

Item 14 (sitting on the floor, lifts head up and keeps lifted for 5 s; D2)

24-year-old individual with Type 2 SMA

“that’s like most of my activities … so doing anything … I have to obviously have my head up, so … when I’m sitting up, which is 90% of the day … so like when I’m eating … if I’m working … if I’m just talking to someone … reading a book using my phone my head is constantly in that position.”

Item 15 (bringing arms up to place both hands on top of the head; D2)

24-year-old individual with Type 2 SMA

“That would just be helpful for doing any … motions around your face … wiping hair out of your face or maybe putting on makeup or something like that … washing your hair … So, there’s a lot of daily tasks that use that activity and that motion.”

Item 16 (sitting at a table, reaches forward to touch a pencil in front; D2)

18-year-old individual with ambulant Type 3 SMA

“So I use this one … when I’m at work and just like in class in general or eating … like grabbing a fork or grabbing my pencil to write or even just typing on the keyboard … So I feel like this one is a really important one to have … it comes up a lot...I feel like that’s like important for everyone as a whole.”

Item 17 (picking up 10 coins and holding in hand for 20 s; D3)

Caregiver of a 6-year-old individual with Type 2 SMA

“So being able to write … to hold an object … for an extended period of time … being able to eat … I keep going back to, you know, the items that are so important too with everyday living … he loves to play games … So, you know, to hold little characters or whatever and play with, play with those as well.”

Item 21 (picking up a ball in front and turn hand over; D3)

Caregiver of a 3-year-old individual with Type 2 SMA

“… it’s allowing you to take care of those kind of daily what seem like mundane tasks, but those daily tasks that she wouldn’t otherwise be able to do … working on that, that turning mechanism for opening a door or opening a drawer turning and opening things.

Item 23 (placing forearms and/or hands on table; D2)

18-year-old individual with ambulant Type 3 SMA

“So this one I would say I use a lot on a day to day … especially like when I’m eating … putting my hands up on the table … or when I’m at work and I’m working on something … just moving my hands up to my desk as well.”

  1. MFM32, 32-item Motor Function Measure