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Table 1 PROMIS Questionnaires Administered

From: Use of the patient-reported outcomes measurement information system (PROMIS®) to assess late-onset Pompe disease severity

PROMIS Questionnaire

Number of Questions

Minimum Score for Each Item

Maximum Score for Each Item

Meaning

Pain Interference Short Form 8a

8

1

“not at all”

5

“very much”

The lower the score, the less pain was an interference in ADL and HRQoL

Upper Extremity Short Form 7a

7

1

“unable to do”

5

“without any difficulty”

The higher the score, the more mobility with upper extremities

Fatigue Short Form 8a

8

1

“not at all”

5

“very much”

The lower the score, the less impact fatigue had on ADL and HRQoL

Physical Function Short Form 20a

20

1

“unable to do”

5

“without any difficulty”

The higher the score, the less impact on physical function

Dyspnea Short Form 10a

10

0

“no shortness of breath”

3

“severely short of breath”

The lower the score, the less limitation by breathlessness

  1. ADL Activities of daily living, HRQoL Health-related quality of life, PROMIS Patient-Reported Outcomes Measurement Information System