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Protocol - Quality of Life as Affected by Respiratory Disease

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Description:

This 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 functioning, 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.

Protocol:

Questions about how much chest trouble you have had over the past 3 months.

Please tick/check one:

Please tick in one box to show how you describe your current health.

[ ] Very good

[ ] Good

[ ] Fair

[ ] Poor

[ ] Very poor

PART 1

Questions about how much chest trouble you have had over the past 3 months.

1. Over the past 3 months, I have coughed:

[ ] Most days a week

[ ] Several days a week

[ ] A few days a month

[ ] Only with chest infections

[ ] Not at all

2. Over the past 3 months, I have brought up phlegm (sputum):

[ ] Most days a week

[ ] Several days a week

[ ] A few days a month

[ ] Only with chest infections

[ ] Not at all

3. Over the past 3 months, I have had shortness of breath:

[ ] Most days a week

[ ] Several days a week

[ ] A few days a month

[ ] Only with chest infections

[ ] Not at all

4. Over the past 3 months, I have had attacks of wheezing:

[ ] Most days a week

[ ] Several days a week

[ ] A few days a month

[ ] Only with chest infections

[ ] Not at all

5. During the past 3 months, how many severe or very unpleasant attacks of chest trouble have you had?

[ ] More than 3 attacks

[ ] 3 attacks

[ ] 2 attacks

[ ] 1 attack

[ ] No attacks

6. How long did the worst attack of chest trouble last? (Go to question 7 if you had no severe attacks)

[ ] A week or more

[ ] 3 or more days

[ ] 1 or 2 days

[ ] Less than a day

7. Over the past 3 months, in an average week, how many good days (with little chest trouble) have you had?

[ ] No good days

[ ] 1 or 2 good days

[ ] 3 or 4 good days

[ ] Nearly every day is good

[ ] Every day is good

8. If you have a wheeze, is it worse in the morning?

[ ] No

[ ] Yes

PART 2

Section 1

Please tick/check one:

9. How would you describe your chest condition?

[ ] The most important problem I have

[ ] Causes me quite a lot of problems

[ ] Causes me a few problems

[ ] Causes no problems

Please tick/check one:

10. If you have ever had paid employment.

[ ] My chest trouble made me stop work altogether

[ ] My chest trouble interferes with my work or made me change my work

[ ] My chest trouble does not affect my work

Section 2

11. Questions about what activities usually make you feel breathless these days.

Please tick/check in each box that applies to you these days:

Sitting or lying still

[ ] True

[ ] False

Getting washed or dressed

[ ] True

[ ] False

Walking around the home

[ ] True

[ ] False

Walking outside on the level

[ ] True

[ ] False

Walking up a flight of stairs

[ ] True

[ ] False

Walking up hills

[ ] True

[ ] False

Playing sports or games

[ ] True

[ ] False

Section 3

Some more questions about your cough and breathlessness these days.

12. Please tick/check in each box that applies to you these days:

My cough hurts

[ ] True

[ ] False

My cough makes me tired

[ ] True

[ ] False

I am breathless when I talk

[ ] True

[ ] False

I am breathless when I bend over

[ ] True

[ ] False

My cough or breathing disturbs my sleep

[ ] True

[ ] False

I get exhausted easily

[ ] True

[ ] False

Section 4

13. Questions about other effects that your chest trouble may have on you these days.

Please tick/check in each box that applies to you these days:

My cough or breathing is embarrassing in public

[ ] True

[ ] False

My chest trouble is a nuisance to my family, friends, or neighbors

[ ] True

[ ] False

I get afraid or panic when I cannot get my breath

[ ] True

[ ] False

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

[ ] True

[ ] False

I do not expect my chest to get any better

[ ] True

[ ] False

I have become frail or an invalid because of my chest

[ ] True

[ ] False

Exercise is not safe for me

[ ] True

[ ] False

Everything seems too much of an effort

[ ] True

[ ] False

Section 5

14. Questions about your medication. If you are receiving no medication go straight to section 6.

Please tick/check in each box that applies to you these days:

My medication does not help me very much

[ ] True

[ ] False

I get embarrassed using my medication in public

[ ] True

[ ] False

I have unpleasant side effects from my medication

[ ] True

[ ] False

My medication interferes with my life a lot

[ ] True

[ ] False

Section 6

15. These are questions about how your activities might be affected by your breathing.

Please tick/check in each box that applies to you because of your breathing:

I take a long time to get washed or dressed

[ ] True

[ ] False

I cannot take a bath or shower, or I take a long time

[ ] True

[ ] False

I walk slower than other people, or I stop for rests

[ ] True

[ ] False

Jobs such as housework take a long time, or I have to stop for rests

[ ] True

[ ] False

If I walk up one flight of stairs, I have to go slowly or stop

[ ] True

[ ] False

If I hurry or walk fast, I have to stop or slow down

[ ] True

[ ] False

My breathing makes it difficult to do things such as walk up hills, carry things up stairs, light gardening such as weeding, dance, play bowls, or play golf

[ ] True

[ ] False

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

[ ] True

[ ] False

My breathing makes it difficult to do things such as very heavy manual work, run, cycle, swim fast, or play competitive sports

[ ] True

[ ] False

Section 7

16. We would like to know how your chest usually affects your daily life.

Please tick/check in each box that applies to you because of your chest trouble:

I cannot play sports or games

[ ] True

[ ] False

I cannot go out for entertainment or recreation

[ ] True

[ ] False

I cannot go out of the house to do the shopping

[ ] True

[ ] False

I cannot do housework

[ ] True

[ ] False

I cannot move far from my bed or chair

[ ] True

[ ] False

Here is a list of other activities that your chest trouble may prevent you doing. (You do not have to tick these; they are just to remind you of ways in which your breathlessness may affect you):

Going for walks or walking the dog

Doing things at home or in the garden

Sexual intercourse

Going out to church, pub, club, or place of entertainment

Going out in bad weather or into smoky rooms

Visiting family or friends or playing with children

Please write in any other important activities that your chest trouble may stop you doing:

.....................................................................................

.....................................................................................

.....................................................................................

17. Now would you tick in the box (one only) which you think best describes how your chest affects you:

[ ] It does not stop me doing anything I would like to do

[ ] It stops me doing one or two things I would like to do

[ ] It stops me doing most of the things I would like to do

[ ] It stops me doing everything I would like to do

Scoring Algorithms:

Three component scores are calculated: Symptoms, Activity, and Impacts

One total score is also calculated.

Principle of calculation

Each questionnaire response has a unique empirically derived "weight." The lowest possible weight is zero and the highest is 100.

Each component of the questionnaire is scored separately in three steps:

i. The weights for all items with a positive response are summed.

ii. The weights for missed items are deducted from the maximum possible weight for each component. The weights for all missed items are also deducted from the maximum possible weight for the total score.

iii. The score is calculated by dividing the summed weights by the adjusted maximum possible weight for that component and expressing the result as a percentage:

Score = 100 x

Summed weights from positive items in that component Sum of weights for all items in that component

The total score is calculated similarly:

Score = 100 x

Summed weights from positive items in the questionnaire Sum of weights for all items in the questionnaire

Sum of maximum possible weights for each component and total:

Symptoms

662.5

Activity

1,209.1

Impacts

2,117.8

Total

3,989.4

(Note: These are the maximum possible weights that could be obtained for the worst possible state of the patient.)

Note that the questionnaire requests a single response to questions 1-7, 9-10, and 17. If multiple responses are given to one of these questions, then averaging the weights for the positive responses for that question are acceptable. We feel that this is a better approach than losing an entire data set and have used this technique in calculating the results used in our validation studies. (Clearly a better approach is to prevent such multiple responses from occurring, but it is difficult to prevent occasional accidents). This method is used in the Excel calculator.

Symptoms Component

This is calculated from the summed weights for the positive responses to questions 1-8.

Activity Component

This is calculated from the summed weights for the positive responses to questions 11 and 15.

Impacts Component

This is calculated from the summed weights for the positive responses to questions 9-10, 12-14, and 16-17.

Total Score

The total score is calculated by summing all positive responses in the questionnaire and expressing the result as a percentage of the total weight for the questionnaire (as shown on previous page).

Handling Missed Items

It is better not to miss items and any missing items are the fault of the experimenter, not the patient. We have examined the effect of missing items and recommend the following methods:

Symptoms

The Symptoms component will tolerate a maximum of 2 missed items. The weight for the missed item is subtracted from the total possible weight for the Symptoms component (662.5) and from the total weight (3,989.4).

Activity

The Activity component will tolerate a maximum of 4 missed items. The weight for the missed item is subtracted from the total possible weight for the Activity component (1,209.1) and from the total weight (3,989.4).

Impacts

The Impacts component will tolerate a maximum of 6 missed items. The weight for the missed item is subtracted from the total possible weight for the Impacts component (2,117.8) and from the total weight (3,989.4).

Protocol Name from Source:

St. George’s Respiratory Questionnaire (SGRQ)

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Life Stage:

Adolescent, Adult, Senior

Participants:

≥ 16 years old

Specific Instructions:

None

Selection Rationale

The St. George’s Respiratory Questionnaire is a well-established protocol that has been widely used since 1991. A 3-month recall period has been used very satisfactorily and has been deemed valid and reliable. Researchers can separately score the study subject’s symptoms, activity limitations, and the impact of respiratory problems. The algorithm also provides for a summary score.

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Person Respiratory Disease Affected Quality of Life Text 2970214 CDE Browser
Logical Observation Identifiers Names and Codes (LOINC) Resp quality of life proto 62630-9 LOINC
Derived Variables

None

Process and Review

Expert Review Panel #6 (ERP 6) reviewed the measures in the Respiratory domain.

Guidance from ERP 6 includes the following:

• No significant changes to measure

Back-compatible: no changes to Data Dictionary

Source

St. George’s Respiratory Questionnaire, English Version, 3 months. Developed by Paul Jones at St. George’s Hospital in London in 1990.

General References

Jones, P. W., Quirk, F. H., & Baveystock, C. M. (1991). The St. George’s Respiratory Questionnaire. Respiratory Medicine, 85 (Supplement 2), 25-31.

Jones, P. W., Quirk, F. H., Baveystock, C. M., & Littlejohns, P. (1992). A self-complete measure for chronic airflow limitation - The St George’s Respiratory Questionnaire. American Review of Respiratory Disease, 145, 1321-1327.

Meguro, M., Barley, E. A., Spencer, S., & Jones, P. W. (2006). Development and validation of an improved COPD-specific version of the St George’s Respiratory Questionnaire. Chest, 132, 456-463.

Protocol ID:

91301

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX091301_3_Months_Chest_Attack_Times PX091301060000 During the past 3 months, how many severe or very unpleasant attacks of chest trouble have you had? 4 N/A
PX091301_Activities_Affected_Bath_Shower PX091301160200 I cannot take a bath or shower, or I take a long time. 4 N/A
PX091301_Activities_Affected_Housework_Stop PX091301160400 Jobs such as housework take a long time, or I have to stop for rests. 4 N/A
PX091301_Activities_Affected_Hurry_Fast_Stop PX091301160600 If I hurry or walk fast, I have to stop or slow down. 4 N/A
PX091301_Activities_Affected_Upstairs_Stop PX091301160500 If I walk up one flight of stairs, I have to go slowly or stop. 4 N/A
PX091301_Activities_Affected_Walk_Stop PX091301160300 I walk slower than other people, or I stop for rests. 4 N/A
PX091301_Activities_Affected_Washed_Dressed PX091301160100 I take a long time to get washed or dressed. 4 N/A
PX091301_Activity_Feel_Breathless_Sitting_Lying PX091301120100 What activities usually make you feel breathless these days? Sitting or lying still. 4 N/A
PX091301_Activity_Feel_Breathless_Sport_Game PX091301120700 What activities usually make you feel breathless these days? Playing sports or games. 4 N/A
PX091301_Activity_Feel_Breathless_Walking_Home PX091301120300 What activities usually make you feel breathless these days? Walking around the home. 4 N/A
PX091301_Activity_Feel_Breathless_Walking_Outside PX091301120400 What activities usually make you feel breathless these days? Walking outside on the level. 4 N/A
PX091301_Activity_Feel_Breathless_Walking_Uphill PX091301120600 What activities usually make you feel breathless these days? Walking up hills. 4 N/A
PX091301_Activity_Feel_Breathless_Walking_Upstairs PX091301120500 What activities usually make you feel breathless these days? Walking up a flight of stairs. 4 N/A
PX091301_Activity_Feel_Breathless_Washed_Dressed PX091301120200 What activities usually make you feel breathless these days? Getting washed or dressed. 4 N/A
PX091301_Breathing_Difficult_Activities_Heavy PX091301160800 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. 4 N/A
PX091301_Breathing_Difficult_Activities_Light PX091301160700 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. 4 N/A
PX091301_Breathing_Difficult_Activities_Very_Heavy PX091301160900 My breathing makes it difficult to do things such as very heavy manual work, run, cycle, swim fast or play competitive sport. 4 N/A
PX091301_Chest_Affect_Best_Description PX091301180000 Which you think best describes how your chest affects you? 4 N/A
PX091301_Chest_Effect_Afraid_Panic PX091301140300 I get afraid or panic when I cannot get my breath. 4 N/A
PX091301_Chest_Effect_Embarrassing_Public PX091301140100 My cough or breathing is embarrassing in public. 4 N/A
PX091301_Chest_Effect_Everything_Much_Effort PX091301140800 Everything seems too much of an effort. 4 N/A
PX091301_Chest_Effect_Exercise_Not_Safe PX091301140700 Exercise is not safe for me. 4 N/A
PX091301_Chest_Effect_Frail_Invalid PX091301140600 I have become frail or an invalid because of my chest. 4 N/A
PX091301_Chest_Effect_Not_Get_Better PX091301140500 I do not expect my chest to get any better. 4 N/A
PX091301_Chest_Effect_Not_In_Control PX091301140400 I feel that I am not in control of my chest problem. 4 N/A
PX091301_Chest_Effect_Nuisance_Family_Friend PX091301140200 My chest trouble is a nuisance to my family, friends or neighbors. 4 N/A
PX091301_Chest_Self_Assessment PX091301100000 How would you describe your chest condition? 4 N/A
PX091301_Chest_Trouble_Affect_Employment PX091301110000 If you have ever had paid employment. 4 N/A
PX091301_Cough_Breathless_Disturb_Sleep PX091301130500 My cough or breathing disturbs my sleep. 4 N/A
PX091301_Cough_Breathless_Exhausted PX091301130600 I get exhausted easily. 4 N/A
PX091301_Cough_Breathless_Hurts PX091301130100 My cough hurts. 4 N/A
PX091301_Cough_Breathless_Tired PX091301130200 My cough makes me tired. 4 N/A
PX091301_Cough_Breathless_When_Bend_Over PX091301130400 I am breathless when I bend over. 4 N/A
PX091301_Cough_Breathless_When_Talk PX091301130300 I am breathless when I talk. 4 N/A
PX091301_Daily_Life_Entertainment_Recreation PX091301170200 I cannot go out for entertainment or recreation. 4 N/A
PX091301_Daily_Life_Far_Bed_Chair PX091301170500 I cannot move far from my bed or chair. 4 N/A
PX091301_Daily_Life_Go_Out_Shopping PX091301170300 I cannot go out of the house to do the shopping. 4 N/A
PX091301_Daily_Life_Housework PX091301170400 I cannot do housework. 4 N/A
PX091301_Daily_Life_Specify PX091301170600 Please write in any other important activities that your chest trouble may stop you doing. 4 N/A
PX091301_Daily_Life_Sports_Games PX091301170100 I cannot play sports or games. 4 N/A
PX091301_Frequency_3_Months_Breath_Shortness PX091301040000 Over the past 3 months, I have had shortness of breath: 4 N/A
PX091301_Frequency_3_Months_Cough PX091301020000 Over the past 3 months, I have coughed: 4 N/A
PX091301_Frequency_3_Months_Phlegm_Sputum PX091301030000 Over the past 3 months, I have brought up phlegm (sputum): 4 N/A
PX091301_Frequency_3_Months_Wheezing PX091301050000 Over the past 3 months, I have had attacks of wheezing: 4 N/A
PX091301_Good_Days_In_Week PX091301080000 Over the past 3 months, in an average week, how many good days (with little chest trouble) have you had? 4 N/A
PX091301_Health_Self_Assessment PX091301010000 How do you describe your current health? 4 N/A
PX091301_Medication_Embarrassed_Using_Public PX091301150200 I get embarrassed using my medication in public. 4 N/A
PX091301_Medication_Interfere_Life PX091301150400 My medication interferes with my life a lot. 4 N/A
PX091301_Medication_Not_Help PX091301150100 My medication does not help me very much. 4 N/A
PX091301_Medication_Unpleasant_Side_Effects PX091301150300 I have unpleasant side effects from my medication. 4 N/A
PX091301_Wheeze_Worse_In_Morning PX091301090000 If you have a wheeze, is it worse in the morning? 4 N/A
PX091301_Worst_Chest_Attack_Last PX091301070000 How long did the worst attack of chest trouble last? 4 N/A
Research Domain Information
Measure Name:

Quality of Life as Affected by Respiratory Disease

Release Date:

November 28, 2017

Definition

This measure assesses the impact of respiratory problems on overall health and quality of life in the past 3 months.

Purpose

Protocol to assess how breathing and respiratory problems affect the study subjects’ self-reported health outcomes.

Keywords

Respiratory, quality of life, St. George’s Respiratory Questionnaire, breathing, activity limitations