Patient-reported outcome measures

Patient Global Impression of Severity CR  PR  longitudinal 

Patient Global Impression of Severity (PGI-S) according to individual, or according to a caregiver answering on behalf of the individual: Select the option that best describes how affected you are now by your SMA.

This item should be captured once per patient; after that, Patient Global Impression of Improvement should be captured at each update. Even though there will, therefore, usually be only one value of this item for each individual, it is marked as longitudinal instead of datestamped to account for registries who choose to collect the value more than once for an individual.

Item type: single selection
Value ID Description
Not at all

Not at all affected

Mildly

Mildly affected

Moderately

Moderately affected

Severely

Severely affected

Patient Global Impression of Improvement CR  PR  longitudinal 

Patient Global Impression of Improvement (PGI-I) according to individual or caregiver: How does the individual/caregiver feel that the individual’s condition has changed in the last 6 months?

Item type: single selection
Related items in previous version: 15.02, 15.03
Value ID Description
1

Very much improved

2

Much improved

3

Minimally improved

4

No change

5

Minimally worse

6

Much worse

7

Very much worse

Record

Patient-reported outcome measure     longitudinal     

Related items in previous version: 15.12, 15.14, 15.16, 15.18, 15.20, 15.22
Patient-reported outcome measure
Item type: single selection
Usage in other datasets: DMDLGMD
Value ID Description
ACEND

ACEND (Assessment of Caregiver Experience with Neuromuscular Disease)

ACTIVLIM

ACTIVLIM (Measurement of Activity Limitations), provide score between 0 and 36

CarerQol7D

CarerQol7D

DISABKIDS

DISABKIDS (Measurement of Quality of Life and Level of Distress)

EQ-5D-5L state

EQ-5D-5L health state, provide 5-digit code

EQ-5D-5L VAS

EQ-5D-5L VAS, provide score between 0 and 100

FSS

FSS (Fatigue Severity Scale)

PEDI-CAT

PEDI-CAT

PedsQL 3.0 Neurosmuscular Module

PedsQL 3.0 Neurosmuscular Module, provide score between 0 and 100

PedsQL Multidimensional Fatigue Scale

PedsQL Multidimensional Fatigue Scale, provide score between 0 and 72

PROMIS

PROMIS (Patient-Reported Outcomes Measurement Information System)

SMA FRS

SMA FRS (SMA Functional Rating Scale)

SMA HI

SMA HI (SMA Health Index)

Patient-reported outcome measure score

The Patient-reported outcome measure value description specifies which type of score must be provided.

Item type: decimal
Related items in previous version: 15.11, 15.13, 15.15, 15.17, 15.19, 15.21
Usage in other datasets: DMDLGMD