NUPDRS1P

Table Description: MDS-UPDRS Part I Patient Questionnaire: Non-Motor Aspects of Experiences of Daily Living (nM-EDL)

Detailed notes for this table are included below.

1.0 Description: nUPDRS Part I: Patient Questionnaire

View Source CRFs

2.0 CRFs: Click on any PAG_NAME link below to be taken to a screenshot of how this eCRF is currently implemented in the PPMI 2.0 Study.

2.0 Data Dictionary

Table Constraints: PATNO, VISIT_ID

ITM_NAME

DSCR

ITM_TYPE

ITM_TYPE_1.0

NUPSOURC

Primary Source of Information

NUMBER

CHAR

NP1SLPN

SLEEP PROBLEMS (NIGHT)

NUMBER

NUMBER

NP1SLPD

DAYTIME SLEEPINESS

NUMBER

NUMBER

NP1PAIN

PAIN AND OTHER SENSATIONS

NUMBER

NUMBER

NP1URIN

URINARY PROBLEMS

NUMBER

NUMBER

NP1CNST

CONSTIPATION PROBLEMS

NUMBER

NUMBER

NP1LTHD

LIGHTHEADEDNESS ON STANDING

NUMBER

NUMBER

NP1FATG

FATIGUE

NUMBER

NUMBER

2.0 Code Book

ITM_NAME

CODE

DECODE_2.0

DECODE_1.0

NP1CNST

0

Normal: No constipation.

NP1CNST

1

Slight: I have been constipated. I use extra effort to move my bowels. However, this problem does not disturb my activities or my being comfortable.

NP1CNST

2

Mild: Constipation causes me to have some troubles doing things or being comfortable.

NP1CNST

3

Moderate: Constipation causes me to have a lot of trouble doing things or being comfortable. However, it does not stop me from doing anything.

NP1CNST

4

Severe: I usually need physical help from someone else to empty my bowels.

NP1FATG

0

Normal: No fatigue.

NP1FATG

1

Slight: Fatigue occurs. However it does not cause me troubles doing things or being with people.

NP1FATG

2

Mild: Fatigue causes me some troubles doing things or being with people.

NP1FATG

3

Moderate: Fatigue causes me a lot of troubles doing things or being with people. However, it does not stop me from doing anything.

NP1FATG

4

Severe: Fatigue stops me from doing things or being with people.

NP1LTHD

0

Normal: No dizzy or foggy feelings.

NP1LTHD

1

Slight: Dizzy or foggy feelings occur. However, they do not cause me troubles doing things.

NP1LTHD

2

Mild: Dizzy or foggy feeling cause me to hold on to something, but I do not need to sit or lie back down.

NP1LTHD

3

Moderate: Dizzy or foggy feelings cause me to sit or lie down to avoid fainting or falling.

NP1LTHD

4

Severe: Dizzy or foggy feelings cause me to fall or faint.

NP1PAIN

0

Normal: No uncomfortable feelings.

NP1PAIN

1

Slight: I have these feelings. However, I can do things and be with other people without difficulty.

NP1PAIN

2

Mild: These feelings cause some problems when I do things or am with other people.

NP1PAIN

3

Moderate: These feelings cause a lot of problems, but they do not stop me from doing things or being with other people.

NP1PAIN

4

Severe: These feelings stop me from doing things or being with other people.

NP1SLPD

0

Normal: No daytime sleepiness.

NP1SLPD

1

Slight: Daytime sleepiness occurs but I can resist and I stay awake.

NP1SLPD

2

Mild: Sometimes I fall asleep when alone and relaxing. For example, while reading or watching TV.

NP1SLPD

3

Moderate: I sometimes fall asleep when I should not. For example, while eating or talking with other people.

NP1SLPD

4

Severe: I often fall asleep when I should not. For example, while eating or talking with other people.

NP1SLPN

0

Normal: No problems.

NP1SLPN

1

Slight: Sleep problems are present but usually do not cause trouble getting a full night of sleep.

NP1SLPN

2

Mild: Sleep problems usually cause some difficulties getting a full night of sleep.

NP1SLPN

3

Moderate: Sleep problems cause a lot of difficulties getting a full night of sleep, but I still usually sleep for more than half the night.

NP1SLPN

4

Severe: I usually do not sleep for most of the night.

NP1URIN

0

Normal: No urine control problems.

NP1URIN

1

Slight: I need to urinate often or urgently. However, these problems do not cause difficulties with my daily activities.

NP1URIN

2

Mild: Urine problems cause some difficulties with my daily activities. However, I do not have urine accidents.

NP1URIN

3

Moderate: Urine problems cause a lot of difficulties with my daily activities, including urine accidents.

NP1URIN

4

Severe: I cannot control my urine and use a protective garment or have a bladder tube.

NUPSOURC

1

Patient

Patient

NUPSOURC

2

Caregiver

Caregiver

NUPSOURC

3

Patient and Caregiver in Equal Proportion

Patient and Caregiver - Equal Proportion

Details

In the EDC, the MDS-UPDRS Part I and Part II patient questionnaires were combined into one form (NUPDRSP). They were split back out into their respective tables (NUPDRS1P and NUPDRS2P) during the transfer to LONI, which matches the 1.0 structure. The NUPDRS1P table is conceptually the same between 1.0 and 2.0. Two small design differences have been outlined below.

PAG_NAME

In 1.0, the PAG_NAME for this table was NUPDRS1P, while in 2.0 the PAG_NAME is NUPDRSP. This is due to the design of the EDC. PAG_NAME is not seen in the above representation of the data dictionary, because it is a standard variable present in all tables derived from CRFs. However, you can see the PAG_NAME in the downloadable version of the PPMI 2.0 data dictionary.

Codebook

Besides NUPRSOURC, no variables from the NUPDRS1P table were included in PPMI 1.0’s Code List. In 2.0, all variable options from the NUPDRS1P table have been added to the codebook to document what the different codes mean for each question.