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Outcome Measures

Home ▶ Members ▶ Assemblies and Sections ▶ Assemblies ▶ Pulmonary Rehabilitation ▶ Outcome Measures ▶ Health-Related Quality of Life


Health-Related Quality of Life

This section on health-related quality of life (HRQoL) presents questionnaires that have been used as outcomes in pulmonary rehabilitation. Included among these questionnaires are both generic- and disease-specific measures.  In this initial offering of these measures, we found measures predominantly evaluating patients with COPD attending pulmonary rehabilitation. In the future, other disease-specific measures will be added.

For those interested in testing their population with one of these measures, the generic questionnaires may not evaluate dyspnea or fatigue, resulting in the need to evaluate these domains with an additional questionnaire. This may increase the burden on patients to complete not just one, but two or more questionnaires.

  • Clinical COPD Questionnaire
    collated by Dr Clarice Tang (School of Health Science, Western Sydney University, New South Wales, Australia), and Suzanne Lareau (University of Colorado, College of Nursing, Anschutz Medical Campus)

  • Chronic Respiratory Disease Questionnaire
    Collated by Dr Clarice Tang (School of Health Science, Western Sydney University, New South Wales, Australia), and Suzanne Lareau (University of Colorado, College of Nursing, Anschutz Medical Campus)

  • EQ-5 Dimensions
    collated by Suhani Patel and Dr Claire Nolan (both authors: Harefield Respiratory Research Group, Royal Brompton and Harefield NHS Foundation Trust and Imperial College London, UK)

  • Rand 36-item
    collated by Dr Clarice Tang (School of Health Science, Western Sydney University, New South Wales, Australia), and Suzanne Lareau (University of Colorado, College of Nursing, Anschutz Medical Campus)

  • St George’s Respiratory Questionnaire
    collated by Dr Clarice Tang (School of Health Science, Western Sydney University, New South Wales, Australia) and Suzanne Lareau (University of Colorado Anschutz Medical Campus).

 

Clinical COPD Questionnaire

  Description
Name of Questionnaire Clinical COPD Questionnaire
Abbreviation/Alternate Name CCQ
Description: Measure clinical control of COPD
Developer Thys van der Molen
E-mail t.van.der.molen@med.umcg.nl
Cost No charge for: students, physicians, clinical practice or academic users. Fees may apply for: healthcare organizations, commercial users & IT companies
License required Copyrighted CCQ © Thys van der Molen et al. 2003.
Self-or rater-administered Self-administered
Time to complete 2 minutes
Number of items 5
Domains & categories (#) 3
Name of domains/ categories Symptom, Function and Mental1
Scaling of items Likert scale 0-6 and 1-7
Scoring Score each domain and calculate Total Score (high scores worse quality of life) Calculator available at https://ccq.nl/?page_id=342
Test-retest/ reproducibility
  • ICC=0.941; Internal consistency α=0.911; function 0.772 and 0.943.
Validity
  • Content1, Convergent2, Concurrent4
Responsiveness to PR
  • Yes5,6
MID
  • 0.4 points7 and 0.4 with PR8
Languages
  1. Translated into 60+ languages (https://ccq.nl/?page_id=4)
References
  1. van der Molen, et. al. Health Qual Life Outcomes. 2003; 1:1.
  2. Reda AA et. al. Respir Med 2010; 104: 1675.
  3. Zhou Z et. al. Respirology 2017; 22: 251.
  4. Kon SS et. al. Thorax 2014; 69: 793.
  5. Barlow R et. al. COPD 2020; 17:280.
  6. Kocks JWH et.al. Chest 2012; 142: 267.
  7. Alma H et al. NPJ Prim Care Respir Med 2016; 26: 16041.
Date of most recent changes September 2020

 

Chronic Respiratory Disease Questionnaire

  Description
Name of Questionnaire Chronic Respiratory Disease Questionnaire
Abbreviation/ Alternate Name CRQ, CRDQ CRQ-SR (self-report), 1,2 CRQ-IA (interviewer administered), CRQ-SAS (dyspnea activities standardized), 2
Description: Disease-specific health-related quality of life questionnaire. Developed to measure the impact of Chronic Obstructive Pulmonary Disease (COPD) on a person's life. 3
Developer GH Guyatt, H Schünemann
E-mail milo@mcmaster.ca
Cost Contact McMaster Industry Liaison Office (MILO) milo@mcmaster.ca
License required Yes. Copyright © 2001 McMaster University, Hamilton, Ontario, CA
Self-or rater-administered Developed initially as an interviewer administered questionnaire. 3 Self-complete subsequently developed. 1,
Time to complete 15-20 minutes 8-10 minutes for self-administration
Number of items 20
Domains & categories (#) 4
Name of domains/ categories Dyspnea, Fatigue, Emotional Function & Mastery
Scaling of items 7-point modified Likert Scale (1-7) and 0-7 on dyspnea domain
Scoring Total Score & sub-scores on each of 4 categories (higher scores indicate improvement)
Test-retest/ reproducibility
  • Test-retest on dyspnea ICC=0.83 using CRQ-SA 1
  • Internal consistency range α= 0.53 to 0.91 4-7 on dyspnea
Validity
  • Content 3, 8
  • CRQ dyspnea & symptom domain of SGRQ r=0.46, p<.01 7
Responsiveness to PR
  • CRQ-SR responsive to short-term changes to health-related quality of life while variable response to long-term changes in COPD 6
  • Dyspnea domain has variable response in COPD 8-11
MID
  • MID on CRQ-IA dyspnea and total score=5 12
  • MID on Total Score =10 13
  • MID on CRQ-SAS =0.5 for the mean domain score 5
Languages
  • 46
  • Validity and reliability established for Arabic 15, Dutch 4, French 16, German 17, Japanese 18, Mandarin (Chinese) 19 Portugese 7, Spanish 20
References
  1. Williams JEA et.al. Thorax 2001;56:954-959.
  2. Schűnemann HJ et. al. Eur Respir J 2005; 25: 31–40.
  3. Guyatt GH et. al. Thorax 1987; 42: 773–778.
  4. Wijkstra PJ et. al. Thorax 1994; 49: 465–467.
  5. Schűnemann HJ et. al. J COPD 2005; 2: 81–89.
  6. Reda AA et. al. Respir Med 2010; 104: 1675–1682.
  7. Moreira GL et. al. J Bras Pneumol 2009; 35: 737–744.
  8. Williams JEA et. al. Thorax 2003; 58: 515–518.
  9. Lacasse Y et. al. Cochrane Database Syst Rev 2006; 18(4): CD003793.
  10. Bhandri NJ et. al. J Cardiopulm Rehabil 2013; 33: 123–127.
  11. Jones PW et. al.  Chest 2012; 142: 134–140.
  12. Redelmeier D et. al. J Clin Epidemiol 1996; 49: 1215–1219.
  13. Regueiro EMG et. al.  Respir Res Open Access 2013; 14: 58.
  14. Guyatt GH et. al. Br J Dis Chest 1987; 81: 45–54.
  15. Moamary AL et.al. BMC Pulm Med 2011; 11(1): 1-6.
  16. Bourbeau J et.al. Can Resp J 2004; 11:702421.
  17. Puhan MA et.al. Health and Quality of Life Outcomes 2004; 2(1):63.
  18. Hajiro T et.al. Am J Respir Crit Care Med 1998;157:785-90.
  19. Meng NH et. al. Quality of Life Research 2011; 20(10): 1745-1751.
  20. Guell R et. al. Eur Resp J 1998; 11:55-60.
Date of most recent changes August 2020

 

EuroQol 5-Dimensions 5-Levels

  Description
Name of Questionnaire EuroQol 5-Dimension 5-Level
Abbreviation/Alternate Name EQ-5D-5L
Description: Generic health status measure; can be used to calculate quality-adjusted life years in health economic evaluation. 1
Developer EuroQol Group https://euroqol.org
E-mail userinformationservice@euroqol.org
Cost Dependent on planned use (free for non-commercial; fee for commercial)
License required Yes
Administration Available as self-complete, interviewer and proxy
Time to complete <5 minutes
Number of items 6, 5 domains for UI and a VAS
Domains/categories (#) 5
Name of domains/categories UI: Mobility, Self-care, Usual activities, Pain/discomfort, Anxiety/depression; VAS: N/A
Scaling of items UI: 1-5; VAS: 0-100
Scoring UI:  Each domain scored on a 1-5 scale. (Contact userinformationservice@euroqol.org to calculate quality-adjusted life years.)

VAS: Scored from 0-100.
Test-retest/ reproducibility
  • 6-month ICC of UI 0.67, VAS 0.67. 2-week test-retest Spearman rank correlation ρ=0.7 (COPD). 2
  • 2-week test-retest reliability UI ρ=0.90 (COPD.) 3
  • ICC 0.73 in a selected group of tuberculosis patients 4
Validity
  • UI and VAS correlated with: MRC Dyspnoea score, SGRQ (all domains and total score), CRQ (all domains and total score), COPD Assessment Test, Clinical COPD Questionnaire (all domains and total score) (COPD). 5
  • UI correlated with: FACIT-dyspnoea, mMRC dyspnoea score, Borg dyspnoea, 6-minute walk distance, and VAS correlated with: FACIT-dyspnoea, mMRC dyspnoea score and Borg dyspnoea (COPD). 6
  • UI correlated with WHO-5 Well Being questionnaire (patients with a chronic condition, including respiratory and cardiovascular disease). 7
  • UI and VAS correlated with WHO-5, SGRQ, & UCSD Shortness of Breath questionnaire (IPF). 8
  • UI valid in patients with asthma. 9.
Responsiveness to PR
  • COPD: UI mean change (95% CI) with PR 0.065 (0.047 to 0.083); VAS mean change (95% CI) with PR 8.6 (6.5 to 10.7) points. 5
  • PHTN: UI Z score 2.94 (p=<.01), VAS Z score 3.19 (p=<.01) 10
  • UI change over 12 months (COPD). 3
MCID
  • COPD: UI mean (range) estimate 0.051 (0.037-0.063); VAS Index mean (range) estimate 6.9 (6.5-8.0) points. 5
  • COPD: VAS 8 points. 11
Languages
Reference
  1. The EuroQol Group. EuroQol – a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199-208
  2. Pickard AS et al. Resp Med 2008;203:519–536
  3. Stavem Qual Life Res 1999;8:45–54
  4. Dion MJ et al. Qual Life Res 2004;13:653–665
  5. Nolan CM et al. Thorax 2016;71:493–500.
  6. Lin FJ et al. BMC Med Res Methodol 2014;14:78
  7. Janssen MF et al. Qual Life Res 2013;22:1717–1727
  8. Kreuter M et al. Respir Res 2017;18:139
  9. Hernandez G et al. J Med Internet Res 2019;21:e10178
  10. Bussotti M et al. Cardiovasc Hematol Disord-Drug Targets 2017; 17:3–10.
  11. Zanini A et al. Respir Care 2015;60:88–95
Date of most recent changes September 22, 2020

Abbreviations: CRQ=Chronic Respiratory Disease Questionnaire; FACIT=Functional Assessment of Chronic Illness Therapy-Fatigue; IPF=Idiopathic Pulmonary Fibrosis; ICC= Intraclass Correlation Coefficient; MCID=Minimal Clinically Important Difference; SGRQ=Saint George’s Respiratory Questionnaire; USCD=University of California San Diego Questionnaire; UI= Utility Index; VAS=Visual Analog Scale

 

Rand 36 item Short Form Health Survey

  Description
Name of Questionnaire RAND 36 item Short Form Health Survey
Abbreviation/ Alternate Name SF 36

36-item Health Survey, Short Form
Description: Generic health related quality of life questionnaire
Developer Medical Outcomes Study
E-mail RANDHealthCare@rand.org
Cost None
License required “User will provide a credit line when printing and distributing this document acknowledging that it was developed at RAND as part of the Medical Outcomes Study.”
Administration Self, or by trained interviewer in person or by telephone. 1
Time to complete 5-10 minutes
Number of items 36
Domains/categories (#) 8
Name of domains/ categories Physical function, role-physical, bodily pain, general health, vitality, social functioning, role-emotional, mental health
Scaling of items Yes/No and 3-5 point Likert Scale
Scoring 0-100 per item (high scores more favorable), converted into standardized scores. Reverse scoring for selected items. Summary scales for PCS and MHC, & Sub-scores on each of 8 categories
Test-retest/reproducibility
  • Test-retest 1
  • Internal consistency range between 0.73-0.96 1
Validity
  • Content 2
  • Valid for use among people with COPD 3
Responsiveness to PR
  • COPD-PCS but not MHC to PR 4
  • PHTN-All domains except pain p=<.05 to.01 5; only role-physical, vitality, social functioning 6
MID
  • MID 2-4 pts COPD 2
  • MID 3-5 for ILD 7
Languages
  • >50
  • Validity and reliability established for Italian, 8 Danish, 9 Iranian, 10 Persian, 11 Chinese 12
References
  1. Brazier JE et. al. BMJ 1992; 305:160-164.
  2. Ware JE Jr. Medical Care 1992; 30:473-483.
  3. Mahler DA et. al. Chest 1995; 107: 1585-1589.
  4. Ries AL et. al. Chest 2005; 128: 3799–3809.
  5. Grünig E et al. Respiration 2011; 81:394–401.
  6. Morris NR et al. Cochrane Database Syst Rev. 2017;1:CD011285.
  7. Swigris JJ et. al. Respir Med 2010; 104: 296–304.
  8. Apolone G et. al. J. Clin Epidemiol 1998; 51:1025-1036.
  9. Bjorner JB et. al. J. Clin Epidemiol 1998; 51: 991-999.
  10. Montazeri A et. al. Qual Life Res 2005; 14: 875-882.
  11. Motamed N et. al. EMHJ 2005; 11: 349-357.
  12. Lam CLK et. al. J. Clin Epidemiol1998; 51:1139-1147.
Date of most recent changes September 22, 2020

Abbreviations: ILD=Interstitial Lung Disease; MHC=Mental Health Component Score; MID=Minimally Important Difference; PCS=Physical Component Summary; PHTN=Pulmonary Hypertension

 

St. George’s Respiratory Questionnaire

  Description
Name of Questionnaire St. George’s Respiratory Questionnaire 1
Abbreviation/Alternate Name SGRQ
Description: Disease-specific questionnaire measuring impact on overall health, daily life and perceived wellbeing in patients with COPD, asthma and bronchiectasis.
Developer Paul W. Jones
E-mail sgrq@sgul.ac.uk
Cost Permission required from authors. Yvonne Forde, email: sgrq@sgul.ac.uk
License required Yes, contact sgrq@sgul.ac.uk
Administration Supervised self-administration. Telephone administration validated. 2
Time to complete 10 minutes
Number of items 50
Domains/categories (#) 2 parts (3 components) and 1 Total Score
Name of domains/categories Symptoms, Impact & Activity and Total Score
Scaling of items Varies with category from Yes/No to Likert type scale
Scoring Total score (0-100) and score on each of 3 domains. A computer program is recommended and can be obtained.

Higher score indicates more limitations.
Test-retest/reproducibility
  • ICC Total Score=0.92, Activity=0.87 2
  • Internal consistency α=0.83 Activity 3
Validity
  • Content 1; Construct 2,4
Responsiveness to PR
  • COPD 5,6
  • COPD= post exacerbation 7
  • PHTN=Significant for Activity and Impact, not Symptoms or Total 8
MID
  • 7 units with PR, 9 4 units on each domain in others 9
Languages Over 70 translations. Validity and reliability established in multiple languages including Chinese, 10 Swedish, 11 Spanish, 12 and Turkish 13
References
  1. Jones PW et al. Am Rev Respir Dis 1992; 145:1321.
  2. Anie et al. J Clin Epidemiol 1996; 49:653.
  3. Barr JT et al. Clin Ther 2000; 22: 1121.
  4. Rutten-van Mölken M et al. Thorax 1999; 54: 995.
  5. Kovelis D et al. Int J COPD 2011; 8: 334.
  6. McCarthy B et al. Cochrane Database of Systematic Rev. Issue 2, 2015.
  7. Puhan M et al. Cochrane Database of Systematic Reviews. Issue 12, 2016.
  8. Raskin J et al. Chron Respir Dis 2014; 11:153–162.
  9. Alma H et al. NPJ Prim Care Respir Med 2016; 26: 16041.
  10. Yu DT et al. Hong Kong Physiotherapy 2004; 22:33-39.
  11. Engstrom CP et al. ERJ 1998;11: 61-66.
  12. Ferrer M et al. ERJ 1996;9: 1160-1166.
  13. Polatlı MA et al. Tuberkuloz ve toraks 2013; 61:81-87.
Date of most recent changes September 22, 2020

Abbreviations: COPD: Chronic Obstructive Pulmonary Disease, ICC=Intraclass Correlation Coefficient; MID=Minimally Important Difference; PHTN: Pulmonary Hypertension; PR: Pulmonary Rehabilitation.