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Table 3 Most frequently reported ADLs in relation to MFM32 item

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

ADL domain

MFM32 item

Most frequently reported daily activity

Reported in interviews

Reported in survey

Dressing

Item 4 (Pulling up the foot)A, B

Putting on shoes

Item 3 (Bringing knee to chest)A, B

Dressing lower body

Item 6 (Raise pelvis)A, B

Putting on pants

Item 5 (Bringing hand to opposite shoulder)A

Dressing upper body

Item 26 (Standing on one foot)A

Dressing lower body

Mobility/transferring

Item 7 (Roll from lying on front to back)A, B

Turning and moving in bed to change positions

Item 8 (Lying down to sitting up)A, B

Getting out of bed

Item 11 (Sit to stand)A, B

Stand after a fall/from sitting on floor

Item 1 (Turning head)A

Adjusting position in bed

Item 2 (Lifting head)A

Lifting head to move pillow/getting out of bed

Item 25 (Stand without support)A

Stand from sitting

Item 29 (Walking on a line)A

Walking around the house

Item 12 (Sitting down on a chair from standing) A

Sitting down when tired/unsteady

Item 24 (Standing up from sitting on chair) A

Stand up from sitting at dinner table/to change position/when carrying objects

Self-care

Item 15 (Bring arms up to place both hands on top of the head)A, B

Brushing hair

Item 5 (Bringing hand to opposite shoulder)B

Itching/scratching

Self-feeding

Item 23 (Place forearms and/or hands on table)A, B

Eating independently

Item 21 (Turning a ball over in hand)A, B

Picking up food when eating

Item 16 (Extending elbow to touch a pencil)A, B

Picking food off a table without help

Item 20 (Tearing a sheet of paper)A

Opening a wrapper/food packaging

Item 13 (Maintain a seated position)B

Eating while seated

Reaching, picking up and holding objects

Item 17 (Picking up coins)A, B

Picking up and holding small items

Item 9 (Sitting on the floor)A, B

Holding objects in a seated position

Item 10 (Leaning towards a ball)A, B

Reaching an object

Item 27 (Touching the floor while standing)A, B

Touching the floor to pick up something

Item 32 (Squatting)A, B

Picking something up from the floor

Physical activity

Item 28 (Walking on heels)A, B

Walking

Item 30 (Running)A, B

Exercising

Item 31 (Hopping)A, B

Exercising/playing sport/hopping

Item 29 (Walking on a line)B

Walking

Item 26 (Standing on one foot)B

Taking a step/walking

Writing and technology use

Item 22 (Pointing at drawings)A, B

Using a phone or other device/touchscreen device

Item 18 (Going around the edge of a CD)A, B

Using a touchscreen device

Item 19 (Pick up pencil and draw loops)A, B

Writing/drawing with a pen

Item 20 (Tearing a sheet of paper)B

Using your hands to tear a piece of paper

Social contact/engagement

Item 14 (Raise the head from the chest)A, B

Having a conversation/engaging with others

Item 1 (Turning head)A, B

Looking around the room

Item 2 (Lifting head)B

Looking around the room

Toileting

Item 25 (Stand without support)B

Using a toilet independently

Item 12 (Sitting down on a chair from standing)B

Using a toilet independently

Item 24 (Standing up from sitting on chair)B

Standing from sitting on toilet

Performing work/school activities

Item 13 (Maintain a seated position)A

Doing work/schoolwork while seated

  1. A The item was most frequently associated with the ADL based on the qualitative interview data
  2. B The item was most frequently associated with the ADL based on the survey data
  3. The specific aspect of the ADL was reported in relation to the patient-friendly MFM32 item in the qualitative interviews and/or quantitative online survey
  4. The specific aspect of the ADL was not included as a response option in the quantitative online survey and was also not reported in the free-text response option by any respondents
  5. ADL Activities of daily living; MFM32, 32-item Motor Function Measure