ID

37432

Description

Patient reported outcome measures (PROMS) in patients with ATTR amyloidosis (short version) Version 1.0.0 Revised July 20th, 2019 Dr. med. Fabian Johannes Bolte Klinik für Gastroenterologie und Hepatologie Universitätsklinikum Münster Conditions: ATTR Amyloidosis Study Population: 2nd European Meeting for ATTR amyloidosis in Berlin 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

Keywords

Versions (2)
  1. 7/26/19 7/26/19 - Martin Dugas
  2. 8/6/20 8/6/20 -
Copyright Holder

Dr. Fabian Bolte

Uploaded on

July 26, 2019

DOI

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License

Creative Commons BY-NC 3.0
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Patient reported outcome measures in ATTR amyloidosis (short version)

English

PROMs ATTR short

1 forms  
  1. StudyEvent: ODM
    1. PROMs ATTR short
Introduction
Description

Introduction

The aim of this survey is to gain views and experiences of patients diagnosed with ATTR amyloidosis to provide a better understanding of ATTR patient needs and challenges. Any information that you disclose in this survey will be treated in strict confidence and no answers will be attributable to you as an individual. You have the right to withdraw from the survey at any time. By answering ´Yes´ you confirm that you have read, understood and accept the points above.
Description

Consent

Data type

integer

Demographic Factors
Description

Demographic Factors

How old are you?
Description

Age

Data type

integer

Measurement units
  • years
years
What is your gender?
Description

Gender

Data type

text

What is your living status?
Description

Living

Data type

text

Please indicate your ethnicity.
Description

Ethnicity

Data type

integer

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

Birth

Data type

text

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

Country

Data type

text

What is your work status?
Description

Work

Data type

integer

What is your smoking status today?
Description

Smoking

Data type

integer

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

Alcohol

Data type

integer

Quality of life
Description

Quality of life

In general, how would you rate your health?
Description

G01

Data type

integer

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

G02

Data type

integer

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

G03

Data type

integer

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

G04

Data type

integer

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

G05

Data type

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.
Description

G09

Data type

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?
Description

G06

Data type

integer

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

G10

Data type

integer

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

G08

Data type

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)
Description

G07

Data type

text

Disability
Description

Disability

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

S1

Data type

integer

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

S2

Data type

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?
Description

S3

Data type

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?
Description

S4

Data type

integer

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

S5

Data type

integer

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

S6

Data type

integer

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

S7

Data type

integer

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

S8

Data type

integer

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

S9

Data type

integer

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

S10

Data type

integer

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

S11

Data type

integer

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

S12

Data type

integer

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Similar models

PROMs ATTR short

1 forms
  1. StudyEvent: ODM
    1. PROMs ATTR short
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Introduction
Item
The aim of this survey is to gain views and experiences of patients diagnosed with ATTR amyloidosis to provide a better understanding of ATTR patient needs and challenges. Any information that you disclose in this survey will be treated in strict confidence and no answers will be attributable to you as an individual. You have the right to withdraw from the survey at any time. By answering ´Yes´ you confirm that you have read, understood and accept the points above.
integer
Introduction
Code List
The aim of this survey is to gain views and experiences of patients diagnosed with ATTR amyloidosis to provide a better understanding of ATTR patient needs and challenges. Any information that you disclose in this survey will be treated in strict confidence and no answers will be attributable to you as an individual. You have the right to withdraw from the survey at any time. By answering ´Yes´ you confirm that you have read, understood and accept the points above.
CL Item
Yes (1)
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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