ID

41268

Beschrijving

Patient reported outcome measures (PROMS) in patients with ATTR amyloidosis (short version) Dr. med. Fabian Johannes Bolte Klinik für Gastroenterologie und Hepatologie Universitätsklinikum Münster Conditions: ATTR Amyloidosis This form is used for patient reported outcome measures (PROMS) in patients with ATTR amyloidosis to understand patients challenges and needs. Use of the following Scores for this standard set: (1) Patient Reported Outcomes Measurement Information System Short Form version 1.1 Global Health (PROMIS-10) (2) World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0)- 12-item Instrument

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Versies (2)
  1. 26-07-19 26-07-19 - Martin Dugas
  2. 06-08-20 06-08-20 -
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Dr. Fabian Bolte

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6 augustus 2020

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Creative Commons BY-NC 4.0
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Patient reported outcome measures in ATTR amyloidosis (short version)

Engels

PROMs ATTR short

1 Formulieren  
  1. StudyEvent: ODM
    1. PROMs ATTR short
Demographic Factors
Beschrijving

Demographic Factors

How old are you?
Beschrijving

Age

Datatype

integer

Maateenheden
  • years
years
What is your gender?
Beschrijving

Gender

Datatype

text

What is your living status?
Beschrijving

Living

Datatype

text

Please indicate your ethnicity.
Beschrijving

Ethnicity

Datatype

integer

What is your country of birth? Skip if you prefer not to answer.
Beschrijving

Birth

Datatype

text

In which country are you currently living? Skip if you do not prefer to answer.
Beschrijving

Country

Datatype

text

What is your work status?
Beschrijving

Work

Datatype

integer

What is your smoking status today?
Beschrijving

Smoking

Datatype

integer

How often do you consume alcoholic drinks or beverages? Please provide an estimated average over the past year.
Beschrijving

Alcohol

Datatype

integer

Quality of life
Beschrijving

Quality of life

In general, how would you rate your health?
Beschrijving

G01

Datatype

integer

In general, how would you rate your quality of life?
Beschrijving

G02

Datatype

integer

In general, how would you rate your physical health?
Beschrijving

G03

Datatype

integer

In general, how would you rate your mental health, including your mood and your ability to think?
Beschrijving

G04

Datatype

integer

In general, how would you rate your satisfaction with your social activities and relationships?
Beschrijving

G05

Datatype

integer

In general, please rate how well you carry out your usual social activities and roles. This includes activities at home, at work, in your community and responsibilities as a parent, spouse, friend, etc.
Beschrijving

G09

Datatype

integer

To what extent are you able to carry out your everyday physicial activities such as walking, climbing stairs, carrying groceries or moving a chair?
Beschrijving

G06

Datatype

integer

In the past 7 days, how often have you been bothered by emotional problems such as feeling anxious, depressed or irritable?
Beschrijving

G10

Datatype

integer

In the past 7 days, how would you rate you fatigue on average?
Beschrijving

G08

Datatype

integer

In the past 7 days, how would you rate your pain on average? (Scale from 0 to 10: 0 is no pain and 10 is the worst imaginable pain)
Beschrijving

G07

Datatype

text

Disability
Beschrijving

Disability

In the past 30 days, how much difficulty did you have in: Standing for long periods such as 30 minutes?
Beschrijving

S1

Datatype

integer

In the past 30 days, how much difficulty did you have in: Taking care of your household responsibilities?
Beschrijving

S2

Datatype

integer

In the past 30 days, how much difficulty did you have in: Learning a new task, for example, learning how to get to a new place?
Beschrijving

S3

Datatype

integer

In the past 30 days, how much of a problem did you have joining in community activities in the same way as anayone else can?
Beschrijving

S4

Datatype

integer

In the past 30 days, how much have you been emotionally affected by your health problems?
Beschrijving

S5

Datatype

integer

In the past 30 days, how much difficulty did you have in: Concentrating on doing something for ten minutes?
Beschrijving

S6

Datatype

integer

In the past 30 days, how much difficulty did you have in: Walking a long distance such as a kilometer?
Beschrijving

S7

Datatype

integer

In the past 30 days, how much difficulty did you have in: Washing your whole body?
Beschrijving

S8

Datatype

integer

In the past 30 days, how much difficulty did you have in: Getting dressed?
Beschrijving

S9

Datatype

integer

In the past 30 days, how much difficulty did you have in: Dealing with people you do not know?
Beschrijving

S10

Datatype

integer

In the past 30 days, how much difficulty did you have in: Maintaining a friendship?
Beschrijving

S11

Datatype

integer

In the past 30 days, how much difficulty did you have in: Your day-to-day work?
Beschrijving

S12

Datatype

integer

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Similar models

PROMs ATTR short

1 Formulieren
  1. StudyEvent: ODM
    1. PROMs ATTR short
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Item Group
Demographic Factors
Age
Item
How old are you?
integer
Item
What is your gender?
text
Gender
Code List
What is your gender?
CL Item
Male (m)
CL Item
Female (f)
Item
What is your living status?
text
Living
Code List
What is your living status?
CL Item
I live alone. (alone)
CL Item
I live with my partner/spouse/family or friends. (partner)
CL Item
I live in a nursing home or other long term care home. (care)
Item
Please indicate your ethnicity.
integer
Ethnicity
Code List
Please indicate your ethnicity.
CL Item
Caucasian (1)
CL Item
Asian (2)
CL Item
Ethnic South and Central American (3)
CL Item
Sub-Saharan African (4)
CL Item
North African (5)
CL Item
Middle East (6)
CL Item
Oceania (7)
CL Item
Other (8)
Birth
Item
What is your country of birth? Skip if you prefer not to answer.
text
Country
Item
In which country are you currently living? Skip if you do not prefer to answer.
text
Item
What is your work status?
integer
Work
Code List
What is your work status?
CL Item
Unable to work due to ATTR amyloidosis (1)
CL Item
Unable to work due to a condition other than ATTR amyloidosis (2)
CL Item
Not working by choice (student, retired, homemaker) (3)
CL Item
Seeking employment (I consider myself able to wokr but can not find a job) (4)
CL Item
Working part-time (5)
CL Item
Working full-time (6)
Item
What is your smoking status today?
integer
Smoking
Code List
What is your smoking status today?
CL Item
Current smoker (1)
CL Item
Ex-smoker quit smoking less than 5 years ago (2)
CL Item
Ex-smoker quit smoking 5 years ago or longer (3)
CL Item
Non-Smoker (4)
Item
How often do you consume alcoholic drinks or beverages? Please provide an estimated average over the past year.
integer
Alcohol frequency
Code List
How often do you consume alcoholic drinks or beverages? Please provide an estimated average over the past year.
CL Item
Never (0)
CL Item
1 to 3 days per month (1)
CL Item
1 to 2 days per week (2)
CL Item
3 to 4 days per week (3)
CL Item
5 to 6 days per week (4)
CL Item
Every day / 7 days per week (5)
Item
In general, how would you rate your health?
integer
Global01
Code List
In general, how would you rate your health?
CL Item
Excellent (5)
CL Item
Very good (4)
CL Item
Good (3)
CL Item
Fair (2)
CL Item
Poor (1)
Item
In general, how would you rate your quality of life?
integer
Global02
Code List
In general, how would you rate your quality of life?
CL Item
Excellent (5)
CL Item
Very good (4)
CL Item
Good (3)
CL Item
Fair (2)
CL Item
Poor (1)
Item
In general, how would you rate your physical health?
integer
Global03
Code List
In general, how would you rate your physical health?
CL Item
Excellent (5)
CL Item
Very good (4)
CL Item
Good (3)
CL Item
Fair (2)
CL Item
Poor (1)
Item
In general, how would you rate your mental health, including your mood and your ability to think?
integer
Global04
Code List
In general, how would you rate your mental health, including your mood and your ability to think?
CL Item
Excellent (5)
CL Item
Very good (4)
CL Item
Good (3)
CL Item
Fair (2)
CL Item
Poor (1)
Item
In general, how would you rate your satisfaction with your social activities and relationships?
integer
Global05
Code List
In general, how would you rate your satisfaction with your social activities and relationships?
CL Item
Excellent (5)
CL Item
Very good (4)
CL Item
Good (3)
CL Item
Fair (2)
CL Item
Poor (1)
Item
In general, please rate how well you carry out your usual social activities and roles. This includes activities at home, at work, in your community and responsibilities as a parent, spouse, friend, etc.
integer
Global09
Code List
In general, please rate how well you carry out your usual social activities and roles. This includes activities at home, at work, in your community and responsibilities as a parent, spouse, friend, etc.
CL Item
Excellent (5)
CL Item
Very good (4)
CL Item
Good (3)
CL Item
Fair (2)
CL Item
Poor (1)
Item
To what extent are you able to carry out your everyday physicial activities such as walking, climbing stairs, carrying groceries or moving a chair?
integer
Global06
Code List
To what extent are you able to carry out your everyday physicial activities such as walking, climbing stairs, carrying groceries or moving a chair?
CL Item
Completely (5)
CL Item
Mostly (4)
CL Item
Moderately (3)
CL Item
A little (2)
CL Item
Not at all (1)
Item
In the past 7 days, how often have you been bothered by emotional problems such as feeling anxious, depressed or irritable?
integer
Global10
Code List
In the past 7 days, how often have you been bothered by emotional problems such as feeling anxious, depressed or irritable?
CL Item
Never (1)
CL Item
Rarely (2)
CL Item
Sometimes (3)
CL Item
Often (4)
CL Item
Always (5)
Item
In the past 7 days, how would you rate you fatigue on average?
integer
Global08
Code List
In the past 7 days, how would you rate you fatigue on average?
CL Item
None (1)
CL Item
Mild (2)
CL Item
Moderate (3)
CL Item
Severe (4)
CL Item
Very severe (5)
Item
In the past 7 days, how would you rate your pain on average? (Scale from 0 to 10: 0 is no pain and 10 is the worst imaginable pain)
text
Global07
Code List
In the past 7 days, how would you rate your pain on average? (Scale from 0 to 10: 0 is no pain and 10 is the worst imaginable pain)
CL Item
0 (no pain) (0)
CL Item
1 (1)
CL Item
2 (2)
CL Item
3 (3)
CL Item
4 (4)
CL Item
5 (5)
CL Item
6 (6)
CL Item
7 (7)
CL Item
8 (8)
CL Item
9 (9)
CL Item
10 (worst imaginable pain) (10)
Item
In the past 30 days, how much difficulty did you have in: Standing for long periods such as 30 minutes?
integer
S1
Code List
In the past 30 days, how much difficulty did you have in: Standing for long periods such as 30 minutes?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Taking care of your household responsibilities?
integer
S2
Code List
In the past 30 days, how much difficulty did you have in: Taking care of your household responsibilities?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Learning a new task, for example, learning how to get to a new place?
integer
S3
Code List
In the past 30 days, how much difficulty did you have in: Learning a new task, for example, learning how to get to a new place?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much of a problem did you have joining in community activities in the same way as anayone else can?
integer
S4
Code List
In the past 30 days, how much of a problem did you have joining in community activities in the same way as anayone else can?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much have you been emotionally affected by your health problems?
integer
S5
Code List
In the past 30 days, how much have you been emotionally affected by your health problems?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Concentrating on doing something for ten minutes?
integer
S6
Code List
In the past 30 days, how much difficulty did you have in: Concentrating on doing something for ten minutes?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Walking a long distance such as a kilometer?
integer
S7
Code List
In the past 30 days, how much difficulty did you have in: Walking a long distance such as a kilometer?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Washing your whole body?
integer
S8
Code List
In the past 30 days, how much difficulty did you have in: Washing your whole body?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Getting dressed?
integer
S9
Code List
In the past 30 days, how much difficulty did you have in: Getting dressed?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Dealing with people you do not know?
integer
S10
Code List
In the past 30 days, how much difficulty did you have in: Dealing with people you do not know?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Maintaining a friendship?
integer
S11
Code List
In the past 30 days, how much difficulty did you have in: Maintaining a friendship?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
Item
In the past 30 days, how much difficulty did you have in: Your day-to-day work?
integer
S12
Code List
In the past 30 days, how much difficulty did you have in: Your day-to-day work?
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
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