ID

14819

Description

Self-administered questionnaire contains 50 items and 76 weighted responses divided into three components: Symptoms (frequency and severity); Activity (activities that cause or are limited by breathlessness); and Impacts (social unctioning, psychological disturbances resulting from airways disease). The protocol is designed to measure health impairment in patients with asthma and chronic obstructive pulmonary disease (COPD). It is also valid for use in bronchiectasis and has been used successfully in patients with kyphoscoliosis and sarcoidosis. ODM derived from: https://cde.nlm.nih.gov Primary source: https://www.phenxtoolkit.org/ Recent publication: Hendershot, T., Pan, H., Haines, J., Harlan, W.R., Marazita, M.L., McCarty, C.A., Ramos, E.M., and Hamilton, C.M. (2015) Using the PhenX toolkit to add standard measures to a study. Curr. Protoc. Hum. Genet. 86:1.21.1-1.21.17. doi: 10.1002/0471142905.hg0121s86 Permission to publish granted by Carol M. Hamilton.

Link

https://cde.nlm.nih.gov

Keywords

  1. 4/29/16 4/29/16 -
  2. 4/29/16 4/29/16 -
Uploaded on

April 29, 2016

DOI

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License

Creative Commons BY-NC 3.0

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Quality of Life as Affected by Respiratory Disease Protocol PhenX Toolkit

Quality of Life as Affected by Respiratory Disease Protocol PhenX Toolkit

PhenX - respiratory - quality of life protocol
Description

PhenX - respiratory - quality of life protocol

Alias
UMLS CUI-1
C3169710
How do you describe your current health?
Description

current health

Data type

text

Alias
UMLS CUI [1,1]
C0018759
UMLS CUI [1,2]
C0521116
Over the past 3 months, I have coughed:
Description

coughed frequency

Data type

text

Alias
UMLS CUI [1,1]
C0010200
UMLS CUI [1,2]
C0439603
Over the past 3 months, I have brought up phlegm (sputum):
Description

phlegm

Data type

text

Alias
UMLS CUI [1]
C0425511
Over the past 3 months, I have had shortness of breath:
Description

shortness of breath

Data type

text

Alias
UMLS CUI [1]
C0013404
Over the past 3 months, I have had attacks of wheezing:
Description

attacks of wheezing

Data type

text

Alias
UMLS CUI [1]
C0043144
During the past 3 months, how many severe or very unpleasant attacks of chest trouble have you had?
Description

attacks of chest trouble

Data type

text

Alias
UMLS CUI [1,1]
C0008031
UMLS CUI [1,2]
C0205082
How long did the worst attack of chest trouble last?
Description

worst attack of chest trouble duration

Data type

text

Alias
UMLS CUI [1,1]
C0008031
UMLS CUI [1,2]
C1522166
UMLS CUI [1,3]
C0449238
Over the past 3 months, in an average week, how many good days (with little chest trouble) have you had?
Description

good days with little chest trouble

Data type

text

Alias
UMLS CUI [1]
C3173994
If you have a wheeze, is it worse in the morning?
Description

wheeze worse in the morning

Data type

boolean

Alias
UMLS CUI [1]
C3173996
How would you describe your chest condition?
Description

chest condition

Data type

text

Alias
UMLS CUI [1]
C0549646
If you have ever had paid employment.
Description

paid employment

Data type

text

Alias
UMLS CUI [1,1]
C0549646
UMLS CUI [1,2]
C1320371
Activity that usually makes you feel breathless these days [PhenX]
Description

activity feel breathless

Data type

text

Alias
UMLS CUI [1]
C3176097
This activity usually makes you feel breathless these days [PhenX]
Description

this activity makes you feel breathless

Data type

text

Alias
UMLS CUI [1]
C3176099
My cough hurts.
Description

my cough hurts

Data type

text

Alias
UMLS CUI [1]
C3174002
My cough makes me tired.
Description

my cough makes me tired

Data type

text

Alias
UMLS CUI [1]
C3174004
I am breathless when I talk.
Description

I am breathless when I talk

Data type

text

Alias
UMLS CUI [1]
C3174006
I am breathless when I bend over.
Description

I am breathless when I bend over

Data type

text

Alias
UMLS CUI [1]
C3174008
My cough or breathing disturbs my sleep.
Description

my cough or breathing disturbs my sleep

Data type

text

Alias
UMLS CUI [1]
C3174010
I get exhausted easily.
Description

I get exhausted easily

Data type

text

Alias
UMLS CUI [1]
C3174012
My cough or breathing is embarrassing in public.
Description

my cough or breathing is embarrassing in public

Data type

text

Alias
UMLS CUI [1]
C3174014
My chest trouble is a nuisance to my family, friends or neighbors.
Description

my chest trouble is a nuisance to my family

Data type

text

Alias
UMLS CUI [1]
C3174016
I get afraid or panic when I cannot get my breath.
Description

I get afraid or panic when I cannot get my breath

Data type

text

Alias
UMLS CUI [1]
C3174018
I feel that I am not in control of my chest problem.
Description

I feel that I am not in control of my chest problem

Data type

text

Alias
UMLS CUI [1]
C3174020
I do not expect my chest to get any better
Description

I do not expect my chest to get any better

Data type

text

Alias
UMLS CUI [1]
C3174022
I have become frail or an invalid because of my chest.
Description

I have become frail or an invalid because of my chest

Data type

text

Alias
UMLS CUI [1]
C3174024
Exercise is not safe for me.
Description

exercise is not safe for me

Data type

text

Alias
UMLS CUI [1]
C3174026
Everything seems too much of an effort.
Description

everything seems too much of an effort

Data type

text

Alias
UMLS CUI [1]
C3174028
My medication does not help me very much.
Description

my medication does not help me very much

Data type

text

Alias
UMLS CUI [1]
C3174030
I get embarrassed using my medication in public.
Description

I get embarrassed using my medication in public

Data type

text

Alias
UMLS CUI [1]
C3174032
I have unpleasant side effects from my medication.
Description

I have unpleasant side effects from my medication

Data type

text

Alias
UMLS CUI [1]
C3174034
My medication interferes with my life a lot.
Description

my medication interferes with my life a lot

Data type

text

Alias
UMLS CUI [1]
C3174036
I take a long time to get washed or dressed.
Description

I take a long time to get washed or dressed

Data type

text

Alias
UMLS CUI [1]
C3174038
I cannot take a bath or shower, or I take a long time.
Description

I cannot take a bath or shower

Data type

text

Alias
UMLS CUI [1]
C3174040
I walk slower than other people, or I stop for rests.
Description

I walk slower than other people

Data type

text

Alias
UMLS CUI [1]
C3174042
Jobs such as housework take a long time, or I have to stop for rests.
Description

jobs such as housework take a long time

Data type

text

Alias
UMLS CUI [1]
C3174044
If I walk up one flight of stairs, I have to go slowly or stop.
Description

I have to go slowly or stop

Data type

text

Alias
UMLS CUI [1]
C3174046
If I hurry or walk fast, I have to stop or slow down.
Description

I have to stop or slow down

Data type

text

Alias
UMLS CUI [1]
C3174048
My breathing makes it difficult to do things such as walk up hills, carrying things up stairs, light gardening such as weeding, dance, play bowls or play golf.
Description

my breathing makes it difficult to do things such as walk up hills

Data type

text

Alias
UMLS CUI [1]
C3174050
My breathing makes it difficult to do things such as carry heavy loads, dig the garden or shovel snow, jog or walk at 5 miles per hour, play tennis or swim.
Description

my breathing makes it difficult to do things such as carry heavy loads

Data type

text

Alias
UMLS CUI [1]
C3174052
My breathing makes it difficult to do things such as very heavy manual work, run, cycle, swim fast or play competitive sport.
Description

my breathing makes it difficult to do things such as very heavy manual work

Data type

text

Alias
UMLS CUI [1]
C3174054
I cannot play sports or games.
Description

I cannot play sports or games

Data type

text

Alias
UMLS CUI [1]
C3174056
I cannot go out for entertainment or recreation.
Description

I cannot go out for entertainment or recreation

Data type

text

Alias
UMLS CUI [1]
C3174058
I cannot go out of the house to do the shopping.
Description

I cannot go out of the house to do the shopping

Data type

text

Alias
UMLS CUI [1]
C3174060
Please write in any other important activities that your chest trouble may stop you doing.
Description

other important activities that your chest trouble

Data type

text

Alias
UMLS CUI [1]
C3174066
I cannot do housework.
Description

I cannot do housework

Data type

text

Alias
UMLS CUI [1]
C3174062
I cannot move far from my bed or chair.
Description

I cannot move far from my bed or chair

Data type

text

Alias
UMLS CUI [1]
C3174064
Which you think best describes how your chest affects you?
Description

think best describes how your chest affects you

Data type

text

Alias
UMLS CUI [1]
C3174067

Similar models

Quality of Life as Affected by Respiratory Disease Protocol PhenX Toolkit

Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
PhenX - respiratory - quality of life protocol
C3169710 (UMLS CUI-1)
Item
How do you describe your current health?
text
C0018759 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
Code List
How do you describe your current health?
CL Item
Very Good (Very Good)
C3641222 (UMLS CUI-1)
CL Item
Good (Good)
C0205170 (UMLS CUI-1)
CL Item
Fair (Fair)
C2911689 (UMLS CUI-1)
CL Item
Poor (Poor)
C2700379 (UMLS CUI-1)
CL Item
Very poor (Very poor)
C3641766 (UMLS CUI-1)
Item
Over the past 3 months, I have coughed:
text
C0010200 (UMLS CUI [1,1])
C0439603 (UMLS CUI [1,2])
Code List
Over the past 3 months, I have coughed:
CL Item
More than 3 attacks  (More than 3 attacks )
CL Item
3 attacks (3 attacks)
CL Item
2 attacks  (2 attacks )
CL Item
1 attack  (1 attack )
CL Item
No attacks (No attacks)
Item
Over the past 3 months, I have brought up phlegm (sputum):
text
C0425511 (UMLS CUI [1])
Code List
Over the past 3 months, I have brought up phlegm (sputum):
CL Item
More than 3 attacks  (More than 3 attacks )
CL Item
3 attacks (3 attacks)
CL Item
2 attacks  (2 attacks )
CL Item
1 attack  (1 attack )
CL Item
No attacks (No attacks)
Item
Over the past 3 months, I have had shortness of breath:
text
C0013404 (UMLS CUI [1])
Code List
Over the past 3 months, I have had shortness of breath:
CL Item
More than 3 attacks  (More than 3 attacks )
CL Item
3 attacks (3 attacks)
CL Item
2 attacks  (2 attacks )
CL Item
1 attack  (1 attack )
CL Item
No attacks (No attacks)
Item
Over the past 3 months, I have had attacks of wheezing:
text
C0043144 (UMLS CUI [1])
Code List
Over the past 3 months, I have had attacks of wheezing:
CL Item
More than 3 attacks  (More than 3 attacks )
CL Item
3 attacks (3 attacks)
CL Item
2 attacks  (2 attacks )
CL Item
1 attack  (1 attack )
CL Item
No attacks (No attacks)
Item
During the past 3 months, how many severe or very unpleasant attacks of chest trouble have you had?
text
C0008031 (UMLS CUI [1,1])
C0205082 (UMLS CUI [1,2])
Code List
During the past 3 months, how many severe or very unpleasant attacks of chest trouble have you had?
CL Item
More than 3 attacks  (More than 3 attacks )
CL Item
3 attacks (3 attacks)
CL Item
2 attacks  (2 attacks )
CL Item
1 attack  (1 attack )
CL Item
No attacks (No attacks)
Item
How long did the worst attack of chest trouble last?
text
C0008031 (UMLS CUI [1,1])
C1522166 (UMLS CUI [1,2])
C0449238 (UMLS CUI [1,3])
Code List
How long did the worst attack of chest trouble last?
CL Item
A week or more  (A week or more )
CL Item
3 or more days (3 or more days)
CL Item
1 or 2 days  (1 or 2 days )
CL Item
Less than a day (Less than a day)
Item
Over the past 3 months, in an average week, how many good days (with little chest trouble) have you had?
text
C3173994 (UMLS CUI [1])
Code List
Over the past 3 months, in an average week, how many good days (with little chest trouble) have you had?
CL Item
No good days  (No good days )
CL Item
1 or 2 good days  (1 or 2 good days )
CL Item
3 or 4 good days  (3 or 4 good days )
CL Item
Nearly every day is good  (Nearly every day is good )
CL Item
Every day is good (Every day is good)
wheeze worse in the morning
Item
If you have a wheeze, is it worse in the morning?
boolean
C3173996 (UMLS CUI [1])
Item
How would you describe your chest condition?
text
C0549646 (UMLS CUI [1])
Code List
How would you describe your chest condition?
CL Item
The most important problem I have  (The most important problem I have )
CL Item
Causes me quite a lot of problems  (Causes me quite a lot of problems )
CL Item
Causes me a few problems  (Causes me a few problems )
CL Item
Causes me no problems (Causes me no problems)
Item
If you have ever had paid employment.
text
C0549646 (UMLS CUI [1,1])
C1320371 (UMLS CUI [1,2])
Code List
If you have ever had paid employment.
CL Item
My chest trouble made me stop work altogether  (My chest trouble made me stop work altogether )
CL Item
My chest trouble interferes with my work or made me change my work  (My chest trouble interferes with my work or made me change my work )
CL Item
My chest trouble does not affect my work (My chest trouble does not affect my work)
Item
Activity that usually makes you feel breathless these days [PhenX]
text
C3176097 (UMLS CUI [1])
Code List
Activity that usually makes you feel breathless these days [PhenX]
CL Item
Sitting or lying still  (Sitting or lying still )
CL Item
Getting washed or dressed  (Getting washed or dressed )
CL Item
Walking around the home  (Walking around the home )
CL Item
Walking outside on the level  (Walking outside on the level )
CL Item
Walking up a flight of stairs  (Walking up a flight of stairs )
CL Item
Walking up hills  (Walking up hills )
CL Item
Playing sports or games (Playing sports or games)
Item
This activity usually makes you feel breathless these days [PhenX]
text
C3176099 (UMLS CUI [1])
Code List
This activity usually makes you feel breathless these days [PhenX]
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My cough hurts.
text
C3174002 (UMLS CUI [1])
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My cough makes me tired.
text
C3174004 (UMLS CUI [1])
Code List
My cough makes me tired.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I am breathless when I talk.
text
C3174006 (UMLS CUI [1])
Code List
I am breathless when I talk.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I am breathless when I bend over.
text
C3174008 (UMLS CUI [1])
Code List
I am breathless when I bend over.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My cough or breathing disturbs my sleep.
text
C3174010 (UMLS CUI [1])
Code List
My cough or breathing disturbs my sleep.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I get exhausted easily.
text
C3174012 (UMLS CUI [1])
Code List
I get exhausted easily.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My cough or breathing is embarrassing in public.
text
C3174014 (UMLS CUI [1])
Code List
My cough or breathing is embarrassing in public.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My chest trouble is a nuisance to my family, friends or neighbors.
text
C3174016 (UMLS CUI [1])
Code List
My chest trouble is a nuisance to my family, friends or neighbors.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I get afraid or panic when I cannot get my breath.
text
C3174018 (UMLS CUI [1])
Code List
I get afraid or panic when I cannot get my breath.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I feel that I am not in control of my chest problem.
text
C3174020 (UMLS CUI [1])
Code List
I feel that I am not in control of my chest problem.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I do not expect my chest to get any better
text
C3174022 (UMLS CUI [1])
Code List
I do not expect my chest to get any better
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I have become frail or an invalid because of my chest.
text
C3174024 (UMLS CUI [1])
Code List
I have become frail or an invalid because of my chest.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
Exercise is not safe for me.
text
C3174026 (UMLS CUI [1])
Code List
Exercise is not safe for me.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
Everything seems too much of an effort.
text
C3174028 (UMLS CUI [1])
Code List
Everything seems too much of an effort.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My medication does not help me very much.
text
C3174030 (UMLS CUI [1])
Code List
My medication does not help me very much.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I get embarrassed using my medication in public.
text
C3174032 (UMLS CUI [1])
Code List
I get embarrassed using my medication in public.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I have unpleasant side effects from my medication.
text
C3174034 (UMLS CUI [1])
Code List
I have unpleasant side effects from my medication.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My medication interferes with my life a lot.
text
C3174036 (UMLS CUI [1])
Code List
My medication interferes with my life a lot.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I take a long time to get washed or dressed.
text
C3174038 (UMLS CUI [1])
Code List
I take a long time to get washed or dressed.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I cannot take a bath or shower, or I take a long time.
text
C3174040 (UMLS CUI [1])
Code List
I cannot take a bath or shower, or I take a long time.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I walk slower than other people, or I stop for rests.
text
C3174042 (UMLS CUI [1])
Code List
I walk slower than other people, or I stop for rests.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
Jobs such as housework take a long time, or I have to stop for rests.
text
C3174044 (UMLS CUI [1])
Code List
Jobs such as housework take a long time, or I have to stop for rests.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
If I walk up one flight of stairs, I have to go slowly or stop.
text
C3174046 (UMLS CUI [1])
Code List
If I walk up one flight of stairs, I have to go slowly or stop.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
If I hurry or walk fast, I have to stop or slow down.
text
C3174048 (UMLS CUI [1])
Code List
If I hurry or walk fast, I have to stop or slow down.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My breathing makes it difficult to do things such as walk up hills, carrying things up stairs, light gardening such as weeding, dance, play bowls or play golf.
text
C3174050 (UMLS CUI [1])
Code List
My breathing makes it difficult to do things such as walk up hills, carrying things up stairs, light gardening such as weeding, dance, play bowls or play golf.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My breathing makes it difficult to do things such as carry heavy loads, dig the garden or shovel snow, jog or walk at 5 miles per hour, play tennis or swim.
text
C3174052 (UMLS CUI [1])
Code List
My breathing makes it difficult to do things such as carry heavy loads, dig the garden or shovel snow, jog or walk at 5 miles per hour, play tennis or swim.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
My breathing makes it difficult to do things such as very heavy manual work, run, cycle, swim fast or play competitive sport.
text
C3174054 (UMLS CUI [1])
Code List
My breathing makes it difficult to do things such as very heavy manual work, run, cycle, swim fast or play competitive sport.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I cannot play sports or games.
text
C3174056 (UMLS CUI [1])
Code List
I cannot play sports or games.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I cannot go out for entertainment or recreation.
text
C3174058 (UMLS CUI [1])
Code List
I cannot go out for entertainment or recreation.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I cannot go out of the house to do the shopping.
text
C3174060 (UMLS CUI [1])
Code List
I cannot go out of the house to do the shopping.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
other important activities that your chest trouble
Item
Please write in any other important activities that your chest trouble may stop you doing.
text
C3174066 (UMLS CUI [1])
Item
I cannot do housework.
text
C3174062 (UMLS CUI [1])
Code List
I cannot do housework.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
Item
I cannot move far from my bed or chair.
text
C3174064 (UMLS CUI [1])
Code List
I cannot move far from my bed or chair.
CL Item
True (True)
C0205238 (UMLS CUI-1)
CL Item
False (False)
C0205237 (UMLS CUI-1)
think best describes how your chest affects you
Item
Which you think best describes how your chest affects you?
text
C3174067 (UMLS CUI [1])

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