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ID
37431
Beskrivning
Patient reported outcome measures (PROMS) in patients with ATTR amyloidosis 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
Nyckelord
Versioner (4)
- 2019-07-23 2019-07-23 - Martin Dugas
- 2019-07-26 2019-07-26 - Martin Dugas
- 2020-08-06 2020-08-06 -
- 2020-08-06 2020-08-06 -
Rättsinnehavare
Dr. Fabian Bolte
Uppladdad den
26 juli 2019
DOI
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Licens
Creative Commons BY-NC 3.0
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Patient reported outcome measures in ATTR amyloidosis
Similar models
PROMs in ATTR amyloidosis
- StudyEvent: ODM
Name
Typ
Description | Question | Decode (Coded Value)
Datatyp
Alias
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
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)
Age
Item
How old are you?
integer
CL Item
Male (m)
CL Item
Female (f)
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)
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
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)
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
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)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
Item
Disease of the nervous system other than neuropathy (i.e. Parkinson´s disease, Multiple Sclerosis, Stroke)
text
Code List
Disease of the nervous system other than neuropathy (i.e. Parkinson´s disease, Multiple Sclerosis, Stroke)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
Dx
Item
When were you diagnosed with ATTR amyloidosis? Please write down the year.
integer
visits
Item
Approximately how many different visits to health care professionals (doctors, specialists and nurses) did you have to make before receiving a diagnosis of ATTR amyloidosis?
integer
Time to Dx
Item
What was the approximate length of time between your first symptom and your ATTR diagnosis? If it was less than one year ago, please put in 1
integer
Item
Which of the following best describes your experience of getting a ATTR amyloidosis diagnosis?
text
Code List
Which of the following best describes your experience of getting a ATTR amyloidosis diagnosis?
CL Item
I had no initial symptoms but was diagnosed with ATTR amyloidosis during tests for another condition. (01)
CL Item
After my initial symptoms and the tests that followed, ATTR amyloidosis was the first diagnosis I received. (02)
CL Item
After my initial symptoms and the tests that followed, I was diagnosed once with another condition before eventually receiving a ATTR amyloidosis diagnosis. (03)
CL Item
After my initial symptoms and the tests that followed, I was diagnosed more than once with other conditions before eventually receiving ATTR amyloidosis diagnosis. (04)
CL Item
I can´t remember. (05)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
Val30Met (01)
CL Item
Non-Val30Met (02)
CL Item
I don´t know. (03)
Item
ATTR amyloidosis can affect almost any part of the body including the nerves, heart, kidneys and GI tract. What organ system was primarily involved when you were first diagnosed? Please tick all options that apply. Eyes (visual changes)
text
Code List
ATTR amyloidosis can affect almost any part of the body including the nerves, heart, kidneys and GI tract. What organ system was primarily involved when you were first diagnosed? Please tick all options that apply. Eyes (visual changes)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
Item
Gastrointestinal tract (loss of appetite, unintentional weight loss, nausea and vomiting, altered bowel habits, ...)
text
Code List
Gastrointestinal tract (loss of appetite, unintentional weight loss, nausea and vomiting, altered bowel habits, ...)
CL Item
yes (y)
CL Item
no (n)
CL Item
Excellent (5)
CL Item
Very good (4)
CL Item
Good (3)
CL Item
Fair (2)
CL Item
Poor (1)
CL Item
Excellent (5)
CL Item
Very good (4)
CL Item
Good (3)
CL Item
Fair (2)
CL Item
Poor (1)
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
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
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
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
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
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)
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
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
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
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
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
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
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
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
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)
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
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
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
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
CL Item
None (0)
CL Item
Mild (1)
CL Item
Moderate (2)
CL Item
Severe (3)
CL Item
Extreme or cannot do (4)
FU
Item
How often do you visit a medical center that specializes in ATTR amyloidosis in a one-year period?
integer
Item
Which of the following best describes the approach taken by your medical care providers in the management of your ATTR amyloidosis? Please tick only one option. I feel the medical care providers involved in my ATTR amyloidosis management ...
text
Code List
Which of the following best describes the approach taken by your medical care providers in the management of your ATTR amyloidosis? Please tick only one option. I feel the medical care providers involved in my ATTR amyloidosis management ...
CL Item
always function as a well-coordinated team that is aligned best to manage my condition. (01)
CL Item
sometimes function as a well-coordinated team that is aligned best to manage my condition and at other times function as a group of individuals who are not well co-ordinated and I am passed around a lot. (02)
CL Item
function as a group of individuals who are not well co-ordinated and I am passed around a lot. (03)
Item
Which of the following healthcare professionals are involved in the ongoing management of your ATTR amyloidosis? Please tick all that apply. Primary care physician
text
Code List
Which of the following healthcare professionals are involved in the ongoing management of your ATTR amyloidosis? Please tick all that apply. Primary care physician
CL Item
yes (y)
CL Item
no (n)
Item
Gastrointestinal specialist (medical specialists who focus on disorders of the digestive system)
text
Code List
Gastrointestinal specialist (medical specialists who focus on disorders of the digestive system)
CL Item
yes (y)
CL Item
no (n)
Code List
Neurologist (medical specialists who deal with the diseases of the nervous system)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
Other
Item
Other specialist
text
CL Item
Treatment I have heard of. (1)
CL Item
Treatment I have access to. (2)
CL Item
Treatment I have received. (3)
CL Item
Treatment I am currently receiving. (4)
CL Item
Treatment I have heard of. (1)
CL Item
Treatment I have access to. (2)
CL Item
Treatment I have received. (3)
CL Item
Treatment I am currently receiving. (4)
CL Item
Treatment I have heard of. (1)
CL Item
Treatment I have access to. (2)
CL Item
Treatment I have received. (3)
CL Item
Treatment I am currently receiving. (4)
CL Item
Treatment I have heard of. (1)
CL Item
Treatment I have access to. (2)
CL Item
Treatment I have received. (3)
CL Item
Treatment I am currently receiving. (4)
CL Item
Treatment I have heard of. (1)
CL Item
Treatment I have access to. (2)
CL Item
Treatment I have received. (3)
CL Item
Treatment I am currently receiving. (4)
CL Item
Treatment I have heard of. (1)
CL Item
Treatment I have access to. (2)
CL Item
Treatment I have received. (3)
CL Item
Treatment I am currently receiving. (4)
CL Item
Treatment I have heard of. (1)
CL Item
Treatment I have access to. (2)
CL Item
Treatment I have received. (3)
CL Item
Treatment I am currently receiving. (4)
Item
Which of the following would help with the ongoing management of your ATTR amyloidosis? Please tick all options that apply. Better access to experts/medical centers that specialize in ATTR amyloidosis.
text
Code List
Which of the following would help with the ongoing management of your ATTR amyloidosis? Please tick all options that apply. Better access to experts/medical centers that specialize in ATTR amyloidosis.
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
Item
More information about/more opportunity to participate in ATTR amyloidosis clinical trials.
text
Code List
More information about/more opportunity to participate in ATTR amyloidosis clinical trials.
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)
CL Item
yes (y)
CL Item
no (n)