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Outcome Measures

Home â–¶ Members â–¶ Assemblies and Sections â–¶ Assemblies â–¶ Pulmonary Rehabilitation â–¶ Outcome Measures â–¶ Dyspnea/Breathlessness


Dyspnea/Breathlessness

To follow are instruments measuring the various qualities of dyspnea (sensory–perceptual experience, affective distress and/or symptom impact or burden).1 We did not categorize instruments based on these qualities, however the user should be familiar with the strengths and limitations of these instruments in that regard. For example, the purpose of measuring dyspnea must first be determined in order to decide on the instrument’s ability to detect the qualities of dyspnea proposed.

While these instruments have all been used in Pulmonary Rehabilitation (PR), some are weaker than others in evaluating dyspnea. For example, the MRC (Medical Research Council) dyspnea scale is not consistently responsive to PR. Also, there is a weakness in the quoted Minimal Important Difference which has been rounded up to “1”.  Lastly, the item descriptions are sometimes confusing to patients. Despite these shortcomings, we have elected to include the MRC among our dyspnea measures because of its common use. Other dyspnea measures have not been included because they lack use or responsiveness to PR.

The reader will note that some instruments are health status measures, however, they have subscales that measure dyspnea. We have reviewed only the psychometric properties of these subscales to the extent that they have been reported.

We wish to thank Enya Daynes who identified and provided extensive reviews of these instruments. We would also like to the the following PR members for taking the time to  edit this list of measures with timely updates: Felicity Blackstock, Linzy Houchen-Wolloff, Suzanne Lareau, Hayley Lewthwaite and Clarice Tang.

  • Parshall MB et al.  An official American Thoracic Society statement: Update on the mechanisms, assessment, and management of dyspnea. Am J Respir Crit Care Med. 2012; 185:435-452.

 

Baseline Dyspnea Index & Translational Dyspnea Index

  Description
Name of Questionnaire Baseline Dyspnea Index & Translational Dyspnea Index1
Abbreviation/Alternate Name BDI & TDI©
Description: Originally interviewer-administered rating of severity of dyspnea at a single state. TDI measures changes in dyspnea severity from the baseline (as established by the BDI).
Developer Donald A Mahler
E-mail donald.a.mahler@hitchcock.org
Cost Fees apply to funded academic users, commercial uses. No fees for students, non-funded academic users and clinical practice.2
License required Permission required and signed user agreement2
Self-or rater-administered Rater or self-administered
Time to complete 10 minutes
Number of items 24
Domains & categories (#) 3
Name of domains/categories Functional Impairment, Magnitude of Task, Magnitude of Effort. Recall: during the last two weeks
Scaling of items Five grades from 0 (very severe) to 4 (no impairment) for each category. TDI rate changes in breathlessness, rated by seven grades ranging from -3 (major deterioration) to +3 (major improvement).
Scoring Range from 0-12. Lower the scores, worse severity of dyspnea. TDI total scores range -9 to +9.
Test-retest/reproducibility
  • BDI interobserver agreements for total score (92-94% agreement, weighted K=0.65-0.70) and each category.
  • Test-retest r=0.76.3
  • TDI interobserver agreement for total score (88-90% agreement, weighted K=0.63-0.65) and each category.1
  • Internal consistency Cronbach α=0.801
  • Test-retest for self-administered TDI ICC=0.844
Validity
  • Correlations with 12MWD r=0.60 p<0.012
  • Correlations with SGRQ, r=0.69, p<0.0135
  • Correlations with HADs: Anxiety r=0.21, p<0.01, Depression r=0.41 p<0.015
Responsiveness to PR TDI change 2.3 point change post PR compared to controls (0.2 point change)3,7
MID MID Change of ≥1 unit6,8
Languages 73 translations available from https://eprovide.mapi-trust.org/instruments/baseline-and-transition-dyspnea-indexes
References
  1. Mahler DA et al. Chest. 1984; 85: 751-758.
  2. Eakin EG et al. Int J Behav Med. 1995; 2: 118-134.
  3. Reardon J et al. Chest. 1994; 105: 1046-1052.
  4. Mahler et al. Chest. 2009; 136:1473-1479.
  5. Perez T et al. Int J Chron Obstruct Pulm Dis. 2015; 10:1163-1172.
  6. Witek TJ et al. Eur Respir J. 2003; 21:267–272.
  7. Leupoldt et al. COPD. 2017; 14:66-71.
  8. Mahler et al. COPD. 2005; 2:99-103.
Date of most recent changes November 2022

 

Borg CR10

  Description
Name of Questionnaire Borg’s 0-10 Category Ratio Scale1,2
Abbreviation/Alternate Name Borg CR10 scale, 0-10 mBorg
Description: Nonlinear scaling of descriptors (except for# 6 & 8). Most often to recall breathlessness “right now” in response to an external stimuli (commonly exercise).
Developer Gunnar Borg
E-mail https://eprovide.mapi-trust.org/instruments/borg-dyspnea-scale
Cost Fee schedule at https://borgperception.se/obtain-a-license/
License required Copyright Borg CR10 scale © Gunnar Borg, 1982, 1998, 2004
Self-or rater-administered Self-administered
Time to complete <1 min
Number of items 1
Domains & categories (#) N/A
Name of domains/categories N/A
Scaling of items 11, descriptors range from “nothing at all” (0) to “maximal” (10). A rating of >11, selected for “Absolute Maximum/Highest Possible”. 
Scoring 0-10
Test-retest/reproducibility Test-retest:  In COPD CPET for 6 weeks.3 Average breathlessness past week = 0.454
Validity
  • Content: NRS and mBorg “on exertion” (ICC=0.66, 95% CI 0.33–0.85), for “now” (ICC=0.14, 95% CI −0.05–0.33), “average” 0.51 (0.15–0.75), “worst” 0.55 (0.34–0.71) and “rest” 0.33 (−0.09–0.66).5
  • Correlated with minute ventilation (r = 0.98 ± 0.01).6
Responsiveness to PR Outpatient PR. Borg improved isowatt 5.7±1.5 pre and 3.7±1.4 post in asthma; 5.6±1.3 pre and 3.6±0.9 post in COPD (both p<.05).8
MID
  • 2 units for “stronger” interventions with large effect sizes > 0.8, such as rehabilitative exercise training or lung volume reduction surgery in emphysema.
  • 1 unit for less intensive interventions with more moderate effects sizes, such as supplemental oxygen or bronchodilator therapy.9
Languages 86 translations10
References
  1. Borg GA. Med Sci Sports Exerc. 1982; 14:377-81
  2. Borg G. Proceedings of the 22nd International Congress of Psychology. Amsterdam, The Netherlands: North Holland Publishing Co; 1980:25–34.
  3. O’Donnell DE et al. ERJ. 2009; 34 866-874.
  4. Eakin EG et al. Int J Behav Med. 1995;2:118-134.
  5. Johnson MJ et al. ERJ. 2016; 47:1861-1864.
  6. Mandor M et al. Chest. 1995; 107:1590-1597.
  7. Higashimoto Y et al. Resp Investigation. 2020; 58:355-366.
  8. Foglio K et al.  ERJ. 1999; 13:125-132.
  9. Ries AL. J COPD. 2005; 2: 105-110.
  10. https://eprovide.mapi-trust.org/instruments/borg-dyspnea-scale#coas_member_access_content
Date of most recent changes December 2022

 

Breathlessness Catastrophizing Scale

  Description
Name of Questionnaire Breathlessness catastrophizing Scale1
Abbreviation/Alternate Name BCS
Description: Adapted from the pain catastrophizing scale, evaluates catastrophizing with breathlessness.
Developer BK Soloman et al.
E-mail brahm.solomon@gmail.com
Cost Free
License required N/A
Self-or rater-administered Self-administered
Time to complete 5-10 minutes1
Number of items 13
Domains & categories (#) NA
Name of domains/ categories NA
Scaling of items 5-point scale 0=not at all, 4= all the time.
Scoring Total=sum of 13 items. Range from 0-52 (52 more severe).
Test-retest/ reproducibility Internal consistency Cronbach’s α 0.962
Validity Content validity ICC >0.69 for each item. 2·

Factor Analysis, one factor solution.·

Concurrent validity to measures of anxiety sensitivity index, Beck Depression scale and COPD self-efficacy, but not performance on 6MWT, non-stop walk test and stair climbing tests.
Responsiveness to PR Mean change -6.14 p<0.011·

Improved on 6MWD, Beck Depression Inventory-II; 9-Item Patient Health Questionnaire; COPD Self-Efficacy Scale and BCS, p ≤ .001.1
MID NA
Languages English
References
  1. Ong WJ et al. Clin Rheumatol. 2021; 40:295-301.
  2. Solomon BK et al. J Psychosom Res. 2015; 79:62-68.
Date of most recent changes January 2023

 

Chronic Respiratory Questionnaire-Dyspnea domain

  Description
Name of Questionnaire Chronic Respiratory Questionnaire- Dyspnea domain (only)1
Abbreviation/Alternate Name CRQ-D
Description The following lists information on the Dyspnea domain only. (Refer to HRQOL for complete details on the CRD.) Patients select up to 5 activities that are important to them and score from extremely breathless to no breathlessness.
Developer GH Guyatt, H Schünemann McMaster University and modified by University Hospitals of Leicester
E-mail milo@mcmaster.ca and pulmonaryrehab@uhl-tr.nhs.uk (modified)
Cost Contact McMaster Industry Liaison Office (MILO) milo@mcmaster.ca

For modified Free for own use. Cost £27 + P&P
License required Yes. Copyright © 2001 McMaster University, Hamilton, Ontario, CA

Modified (CRQ-SR) is protected under copyright may be photocopied for own use, but not be used for pharmaceutical company sponsored research without prior permission from Glenfield Hospital.
Self-or rater-administered Interviewer1 or self-administered2
Time to complete 5 minutes for the domain
Number of items 5 (dyspnea)
Domains & categories (#) 4
Name of domains/ categories Dyspnea, fatigue, emotion and mastery
Scaling of items Extremely breathless (1), Very (2), Quite (3), moderately (4), Some (5), A little (6), No breathlessness (7)
Scoring Mean score 1-7 on domain 
Test-retest/ reproducibility Test-retest- ICC 0.832

Internal consistency- range α= 0.53 to 0.91 on dyspnea domain2,4,5,6
Validity Content validity was not explored for the dyspnea domain due to low reliability of the comparator measure.2
Responsiveness to PR Variable response to PR 0.75 95% CI 0.56 to 1.038
MID MID= 0.5 per domain7
Languages 46
References
  1. Guyatt GH et. al. Thorax. 1987; 42:773–778.
  2. Williams JEA et al.  Thorax. 2001; 56:954-959.
  3. Williams JE et al. Thorax. 2003; 58:515-518.
  4. Wijkstra PJ et. al. Thorax. 1994; 49: 465–467.
  5. Reda AA et. al. Respir Med. 2010; 104: 1675–1682.
  6. Schűnemann HJ et. al. J COPD. 2005; 2: 81–89.
  7. Redelmeier D et. al. J Clin Epidemiol. 1996; 49: 1215–1219.
  8. McCarthy B et al. Cochrane Database Syst Rev. 2015. 23: CD003793
Date of most recent changes December 2022

 

Clinical COPD Questionnaire-Dyspnea

  Description
Name of Questionnaire Clinical COPD Questionnaire
Abbreviation/Alternate Name CCQ
Description: A health status measure of clinical control of COPD. One domain evaluates symptoms (dyspnea, cough and phlegm).
Developer Van der Molen et al.
E-mail t.van.der.molen@med.rug.nl
Cost No charge for: students, physicians, clinical practice or academic users. Fees may apply for: healthcare organizations, commercial users & internet companies.
License required Copyrighted. CCQ© may not be changed, translated or sold (paper or software) without permission of Thys van der Molen.
Self-or rater-administered Self-administered
Time to complete <1 minute
Number of items Total of 10 items across 3 domains. Symptom domain consists of 4 items, 2 of the 4 relate to dyspnea.
Domains & categories (#) Symptom (2 items relate to dyspnea)
Name of domains/ categories Symptoms, functional state, mental state
Scaling of items 7-point likert scale (0-6). Lower scores indicate better symptoms.
Scoring Mean score of items on symptom domain 0-32 divided by 4 items.
Test-retest/ reproducibility Test-retest for total score ICC 0.941

Internal consistency Cronbach’s α for symptoms 0.65-0.782
Validity Content validity- symptoms of SGRQ 0.65-0.78. 2

Correlation post PR with SGRQ symptoms was 0.14 (p<.001); with CRQ dyspnea -0.46 (p<.001).4
Responsiveness to PR Responsive to rehabilitation with improvements of -0.4 points.3
MID MID 0.42, 3
Languages Translated into 60+ languages (https://ccq.nl/?page_id=4).
References
  1. van der Molen T et al. Health Qual Life Outcomes. 2003; 1:1-10.
  2. Zhou Z et al. Respirology. 2017; 22: 251-262.
  3. Alma H et al. NPJ Prim Care Respir Med. 2016; 26: 1-8.
  4. Kon SSC et al. Thorax. 2014; 69:793-798.
Date of most recent changes December 2022

 

Disability Related to COPD Tool

  Description
Name of Questionnaire Disability Related to COPD Tool
Abbreviation/Alternate Name DIRECT
Description: Assesses disability due to breathlessness i. e. the physical limitation or functional impact of breathlessness.
Developer Aguilaniu B; Gonzalez-Bermejo J; Regnault A; Arnould B; Mueser M; Granet G; Bonnefoy M; Similowski T; Dias-Barbosa C
E-mail antoine.regnault@mapivalues.com
Cost Freely available in original publication
License required © 2011, Pfizer and Boehringer Ingelheim
Self-or rater-administered Self
Time to complete < 5 min
Number of items 10
Domains & categories (#) 4
Name of domains/categories Basic Activities of Daily Living (BADL); Instrumental ADL (IADL); Advanced ADL (AADL); Impact on daily life.
Scaling of items Rating on 4- (0 to 3) or 5-point (0 to 4) Likert scale, anchored by descriptors (“never” to “all of the time”) pertaining to how often the different daily tasks or relationships are impacted by breathlessness.
Scoring A single, total score (TS) is reported (0–34). Developers propose score >10 indicates noticeable & >20 high levels of disability.
Test-retest/ reproducibility Cronbach’s α=0.947.1
Validity Concurrent: Correlation with SGRQ Symptom (0.61), Activity (0.83), Impact (0.83), TS (0.87).

LHS overall handicap score (−0.70) and MMRC dyspnea (0.73).1

 Univariate linear regressions for DIRECT score and BODE index (p=<0.001; R2 = 0.47), post-bronchodilator FEV1 (p=<0.001; R2 = 0.25), 6MWD (p=< .001; R2 = 0.21) and CCI (p=<0.001; R2 = 0.05).1
Responsiveness to PR Change after PR −1.9 (−2.6 to −1.2)2
MID ≥2 units for the DIRECT score2
Languages French (original), US English
References
  1. Aguilaniu, B et al. Int J COPD. 2011; 6:387-398.
  2. Lévesque J et al. Int J COPD. 2019; 14:261-269.
Date of most recent changes December 2022

 

Dyspnoea-12

  Description
Name of Questionnaire Dyspnoea-121
Abbreviation/Alternate Name D-12
Description: Description of breathlessness related to the different qualitative dimensions of breathlessness. The focal period is “These days”.
Developer Janelle York
E-mail j.yorke@salford.ac.uk
Cost None
License required No
Self-or rater-administered Self-administered
Time to complete <5 min
Number of items 12
Domains & categories (#) Physical (7 items) and Affective (5 items)
Name of domains/ categories Physical, Affective
Scaling of items 4-point Likert scale, rated 0= “none”, 1= “mild”, 2= “moderate”, 3= “severe”
Scoring Summation of scores. Total score (TS) from 0-36, higher scores worse symptoms
Test-retest/ reproducibility
  • Test-retest: ICC = 0.9, p=0.001.1,
  • Internal consistency Cronbach’s α: .91
Validity
  • Correlate to Mmrc (r=0.59), SGRQ- Symptoms (r=0.57), Activities (r=0.78), Impacts (r=0.75), Total (r=0.79)2 for people with ILD.
  • Negative correlations for both instruments and subscales with FEV1 % pred.3
Responsiveness to PR ·     Change following PR in COPD: TS: pre 23.9 ±8.9 vs post 17.6 ±9.4, p<.001.3
MID
  • TS in COPD 2.68, 95% CI 1.16–4.20, n=27
  • TS non-COPD (asthma, HF and IPF;) 2.97, 95% CI 1.94–4.00, n=106.4 
  • 6 in PR3
Languages French, Portuguese, Italian, Swedish, Spanish, Arabic, Korean, Urdu, Japanese
References
  1. Yorke J et al. Thorax. 2010; 65:21–26.
  2. Yorke et al. Chest. 2011; 139:159-164.
  3. Williams M et al. J Pain Symptom Manage. 2022; 63: e75-e87.
  4. Beaumont M et al. Clin Respir J. 2021; 15: 413– 419.
  5. Ekstrom M et al.  J Pain Symptom Manage. 2020; 60: 968-975e1.
Date of most recent changes December 2022

 

King’s Brief Interstitial Lung Disease questionnaire©

  Description
Name of Questionnaire King’s Brief Interstitial Lung Disease questionnaire©1
Abbreviation/Alternate Name K-BILD©
Description: Health status questionnaire for patients with ILD. 
Developer Surinder S Birring
E-mail kbildenquiries@gmail.com
Cost Unknown
License required Copyright https://www.kbild.com/
Self-or rater-administered Self-administered
Time to complete <1 minute for breathlessness
Number of items 15= psychological (7), breathlessness & activities (4), chest symptoms (3), financial status (1).
Domains & categories (#) 3
Name of domains/categories Psychological (KBILD-P); Breathlessness & activities (KBILD-B);

Chest symptoms (KBILD-C) & a Total Score (KBILD-T)
Scaling of items 1-7 likert scale with verbal descriptors of frequency.
Scoring Total Score (TS) and each domain range from 0-100. Higher scores indicate better HRQoL.
Test-retest/Reproducibility Test-retest  

ICC= K-BILD-P, 0.91; KBILD-B, 0.96; KBILD-C, 0.86; KBILD-T, 0.94.1

Internal consistency  Cronbach's α coefficient 0.94 for K-BILD-T1
Validity FVC (% pred) r=0.38–0.51, DLCO (% pred) r=0.42–0.52, SGRQ range r= −0.59 to -0.89 with KBILD-T and SGRQ TS r= -0.89.

KBILD-B with SF36 Physical Component r= 0.70.1
Responsiveness to PR Responsive to PR,2 Supplementary oxygen,3 medical management of cough,4 longitudinal change,5 associated with survival in ILD & IPF.6
MID MID in PR: KBILD-P= 5.4; KBILD-B=4.4; KBILD-C=9.8 & KBILD-T=3.9.2

Non PR MID. KBILD-P=6; KBILD-B=7; KBILD-C=11; KBILD-T=5.7
Languages French, Italian, Swedish, Dutch8 also refer to MAPI Trust
References
  1. Patel AS et al. Thorax. 2012; 67:804.
  2. Nolan CM et al. Eur Respir J. 2019. 54.
  3. Visca D et al. Lancet Respir Med 2018: 6: 759-770.
  4. Birring SS et al. Lancet Respir Med 2017: 5: 806-815.
  5. Siegert et al. Am J Respir Crit Care Med 2012: 185: A4580.
  6. Kim JW et al. Chron Respir Dis 2021; 18: 14799731211033925.
  7. Sinha A et al. BMJ Open Respir Res 2019;6:e000363.
  8. Wapenaar M et al. Chron Respir Dis 2017; 14:140–150.
Date of most recent changes December 2022

 

London Chest Activity of Daily Living Questionnaire

  Description
Name of Questionnaire London Chest Activity of Daily Living Questionnaire1
Abbreviation/Alternate Name LCADL
Description: Assesses an individual’s perception of dyspnea during ADLs as a result of respiratory disease.
Developers Garrod R, JC Bestall, EA Paul, JA Wedzicha, PW Jones
E-mail rachelgarrod1@gmail.com
Cost None
License required LCADL© St George’s Hospital Medical School, November 2007. All rights reserved
Self-or rater-administered Self-administered
Time to complete 5 minutes
Number of items 15
Domains & categories (#) 4
Name of domains/ categories Self-care, domestic, physical, leisure activities
Scaling of items 1 no breathless, 2 moderate, 3 very breathless, 4 can no longer do, 5 need someone else to do this, 0 wouldn’t do anyway.
Scoring Total Score 0-75 where 75 is more severe breathlessness
Test-retest/reproducibility Test-retest ICC= 0.93 [0.82-0.97]2

Internal consistency, Cronbachs α= 0.982
Validity Concurrent validity with SGRQ activity domain r=0.702
Responsiveness to PR Self-care, physical leisure domains and TS.2 Self-care, domestic, leisure domains and TS 3

28% of TS distinguished the functional status in COPD4
MID 4 points TS.5
Languages English, Dutch, Korean, French
References
  1. Garrod R et al.  Respir Med. 2000; 94:589-596.
  2. Garrod R et al. Respir Med. 2002; 96:725-730.
  3. Kovelis D et al. J Bras Pneu[1]mol. 2008; 34: 1008–1018.
  4. Gulart AA et al. Braz J Phys Ther. 2020; 24:264-272.
  5. Bisca GW et al. J Cardiopul Rehabil Prev. 2014; 34:213-216.
Date of most recent changes December 2022

 

Medical Research Council Dyspnea Score

  Description
Name of Questionnaire Medical Research Council Dyspnea Score1
Abbreviation/Alternate Name MRC, mMRC (modified)
Description: Establish grade of breathlessness based on activity level.
Developer Medical Research Council
E-mail corporate@mrc.ukri.org
Cost Free
License required Permission granted for any use with the statement “Used with the permission of the Medical Research Council”. Also indicate where applicable, any changes made to questions.
Self-or rater-administered Self-administered
Time to complete <1 minute
Number of items 1
Domains & categories (#) NA
Name of domains/categories NA
Scaling of items 1-5 MRC, or 1-5 including 5a and 5b for modified MRC (mMRC). High scores indicate more severe breathlessness.2
Scoring 1-5
Test-retest/ reproducibility Test-retest in COPD ICC r=0.823
Validity Scores correlate well with the results of other breathlessness scales, lung function measurements and with direct measures of disability such as walking distance.2 Questions however may be ambiguous.4
Responsiveness to PR Poor response to PR.5,6,
MID 1 point7
Languages English
References
  1. Fletcher CM. Proc Royal Soc Med. 1952 577-584.
  2. https://www.ukri.org/councils/mrc/facilities-and-resources/find-an-mrc-facility-or-resource/mrc-dyspnoea-scale/
  3. Mahler DA. Chest. 2009; 136:1473-1479.
  4. Yorke J et. al. Int J COPD. 2022; 17:2289-2299.
  5. Kovelis D et. al. COPD. 2011; 8:334–339.
  6. Evans RA et. al. Respir Med. 2009. 103:1070-1075.
  7. de Torres JP et. al. Chest. 2002; 121: 1092-1098.
Date of most recent changes June 2023

 

Multidimensional Dyspnea Profile

  Description
Name of Questionnaire Multidimensional Dyspnea Profile1
Abbreviation/Alternate Name MDP
Description: Respondents select 11 items rating the 5 sensory qualities that best describes their breathlessness (overall unpleasantness, intensity of 5 sensory qualities [muscle work/effort, air hunger, chest tightness, mental effort, and breathing a lot], and intensity of five emotional responses of breathlessness (depressed, anxious, frustrated, angry, and afraid).
Developer R Banzett
E-mail rbanzett@bidmc.harvard.edu
Cost Free for student and individual researchers, unfunded studies and individual clinicians. Fee (unspecified) for funded studies for commercial use, healthcare organisations and IT companies.
License required Multidimensional Dyspnea Profile© 2011 R.B. Banzett. All Rights Reserved. Available via MAPI research trust.
Self-or rater-administered Self or assisted
Time to complete 5-10 min
Number of items 11
Domains & categories (#) 3 domains and possible sub-scores
Name of domains/ categories Overall unpleasantness (A1), Immediate Perception (IP), Emotional Response (ER)
Scaling of items 0-10 numeric rating scale, 0 = none and 10 = as much as I can imagine.
Scoring Total score not recommended. Sub-scores used for IP (0-60, includes SQ and A1) and ER (0-50). If a summary score is sought, the overall unpleasantness (A1, 0-10) score is recommended.
Test-retest/reproducibility Test-retest: 2 wks. ICC:0.91-0.982, Pooled ICC, IP= 0.85, ER= 0.843

Internal consistency: Cronbach’s α 0.82-0.952, IP=0.88, ER=0.863

Factor analysis, two factor structure2
Validity Concurrent with CATS, HADS and mMRC.4
Responsiveness to PR Yes5,6
MID Mixed respiratory diseases: A1 =1 unit, IP=5, ER=3.7
Languages Danish, Dutch, English, Flemish, French (Canada & France), German, Italian, Norwegian, Portuguese (Brazil), Swedish, Turkish.
References
  1. Banzett RB et al. Eur Respir J. 2015; 45:1681-1691.
  2. Meek PM et al. Chest. 2012; 141:1546-53.
  3. Williams MT et. al. J Pain Symptom Manage. 2022; 63:e75-e87.
  4. Williams MT et. al. Eur Respir J. 2017; 49: 1600773.
  5. Beaumont M et. al. Chron Respir Dis. 2012; 305-312.
  6. Beaumont M et. al. Eur Respir J. 2018; 51: 1701107.
  7. Ekström M et. al. Eur Respir J. 2021; 57: 2002823.
Date of most recent changes March 2023

 

Pulmonary Functional Status & Dyspnea Questionnaire

  Description
Name of Questionnaire Pulmonary Functional Status & Dyspnea Questionnaire
Abbreviation/Alternate Name PFSDQ
Description: Measures changes in activities related to 79 activities of daily living and dyspnea. Categories of activities include; self-care, mobility, eating, home management, social, and recreational. Dyspnea also measured in relation to suffocation, intensity, severity of dyspnea most days, and overall with daily activities. Activities are relevant for adults of both sexes and reflect various workload requirements.
Developer Suzanne C. Lareau
E-mail Suzanne.lareau@ucdenver.edu
Cost None
License required Contact developer for use
Self-or rater-administered Self
Time to complete 17 minutes initially, 15 minutes on repeat testing.
Number of items 164
Domains & categories (#) 2 domains 6 categories
Name of domains/ categories Domains: activity and dyspnoea.

Categories: self care, mobility, home management, eating, recreation, and social.
Scaling of items Modified Likert 0-10 scale with verbal descriptors. Part 1 (Activity domain), Part 2 (Dyspnea domain) scores range from 0 “no shortness of breath,” to 10 “very severe shortness of breath,” as well as response to single items.
Scoring Total Score (TS) is the mean score reported of all activities. Calculated by rating of dyspnea for each activity divided by the number of activities rated. Not included are missing data and activites identified as never done. Higher scores indicate worse dyspnea. (Single items not calculated in TS.)
Test-retest/ reproducibility Test-retest  0.94 for dyspnea TS. The general ratings of dyspnea on most days, today, and with activities 0.54 to 0.77.1

Internal consistency Both dyspnea and activities= 0.91. Cronbach’s α ranged from 0.88 to 0.94.1
Validity Content-Clinical experts and findings related to expected theoretical relationships.1
Responsiveness to PR Discriminated between groups following PR vs bilateral lung volune reduction surgery.  Reduction in dyspnea with exercise significantly greater reduction (PR = -1.0 vs BLVRS = -2.6, p <0.05).2
MID NA
Languages English. Flemish (Dutch), Japanese, Norwegian.
References
  1. Lareau SC et. al. Heart Lung. 1994; 23:242-250.
  2. Mercer K et. al. Int J Surg Investig. 1999; 1:139-147.
  3. Lareau SC et. al. Heart Lung. 1999; 28:65-73.
Date of most recent changes January 2023

 

Pulmonary Functional Status & Dyspnea Questionnaire-Modified Dyspnea Domain

  Description
Name of Questionnaire Pulmonary Functional Status & Dyspnea Questionnaire-Modified
Abbreviation/Alternate Name PFSDQ-Mdys
Description: Modified from PFSDQ. Assesses frequency & intensity of dyspnea (with and without activities).1
Developer Suzanne C. Lareau
E-mail Suzanne.lareau@ucdenver.edu
Cost None
License required Contact developer for use
Self-or rater-administered Self
Time to complete 7 minutes
Number of items 40
Domains & categories (#) 3, activities, dyspnea, fatigue
Name of domains/categories Dyspnea with 10 activities, frequency and intensity of dyspnea under 5 conditions
Scaling of items Modified Likert 0-10 with verbal descriptors. Degree of dyspnea, 0 = none, 1-3 = mild, 4-6 = moderate, 7-9 = severe, 10 = very severe.
Scoring Total Score (TS) of items on dyspnea with activities. TS=rating of dyspnea for each activity, divided by the number of activities rated. Not included are missing data and activites identified as never done Intensity of 5 independent items (not included in TS).
Test-retest/reproducibility Test-retest  0.902 for dyspnea. General ratings of dyspnea on most days, today, and with activities r= 0.54 to 0.77.2

ICC dyspnea= 0.932
Validity Content Clinical experts and findings related related to expected theoretical relationships.1

Construct PFSDQ-Mdys and SGRQ symptoms r=0.53, p< 0.01; SGRQ activity r=0.70, p= 0.00012
Responsiveness to PR Yes3,4
MID 5 points on PFSDQ-Mdys4
Languages Chinese, Flemish, French, Japanese, Norwegian, Portuguese, Spanish, Swedish.
References
  1. Lareau SC et. al. Heart Lung. 1999; 28:65-73.
  2. Kovelis D et. al. J Bras Pneumol. 2008; 34:1008-1018.
  3. Pitta F et. al. Chest. 2008; 134:273-280.
  4. Regueiro EMG et. al. Respir Res. 2013, 14:58.
Date of most recent changes February 2023

 

Saint George’s Respiratory Questionnaire - Symptom Domain

  Description
Name of Questionnaire Saint George’s Respiratory Questionnaire1
Abbreviation/Alternate Name SGRQ
Description: Disease-specific instrument used in asthma, COPD and other respiratory conditions. Designed to measure impact on overall health, daily life, and perceived well-being. Indirectly measures dyspnea, on the symptom domain. Reporting is over past 3 months
Developer Paul Jones on behalf of Saint George’s University
E-mail pjones@sgul.ac.uk
Cost The St. George's University of London Medical School grants permission for clinicians to use the SGRQ without charge.
License required For license or electronic copy of Excel-based Scoring Calculator, email Yvonne Forde, email: sgrq@sgul.ac.uk. For commercial organizations, a license fee for use is required. 
Self-or rater-administered Self-administered
Time to complete <5 minutes for domain
Number of items 8 for symptom domain
Domains & categories (#) 3-activity, symptoms & impacts domains
Name of domains/categories Symptoms
Scaling of items Varies with question. Items weighted
Scoring Range=0-100 (higher score more severe limitations).
Test-retest/ reproducibility Test-retest (at 2-3 weeks) 0.91 for symptoms2

 Internal consistency for Asthma r=0.91 COPD r=0.92
Validity Concurrent1,2

Symptoms with MRC r=0.13, p<001; 6MWD r=.07, p<.01; FEV1 r=.01, p=ns2
Responsiveness to PR Responsive on symptoms does not often meet MID3,5,6
MID In general 4 points per domain,4 however 7 pts with PR7
Languages 76 languages
References
  1. Jones PW et al. Resp Med. 1991; 85:2531.
  2. Jones PW et al. Am Rev Respir Dis. 1992; 45:1321-1327. 
  3. Sciriha A et al. Chron Respir Dis. 2017; 14:352-359.
  4. Jones PW. Eur Respir J. 2002; 19:398-404.
  5. Ries AL et. al. Chest. 2005; 128:3799-3809.
  6. de Torres JP et. al. Chest. 2002; 121:1092-1098.
  7. Alma H et. al. Prim Care Respir Med. 2016; 26: doi:10.1038/npjpcrm.2016.41
Date of most recent changes March 2023

 

University of California, San Diego Shortness of Breath Questionnaire

  Description
Name of Questionnaire University of California, San Diego Shortness of Breath Questionnaire1
Abbreviation/Alternate Name UCSD SOBQ
Description: Estimate degree of breathlessness anticipated with activities. Three additional items ask about limitations due to:  breathlessness, fear of harm from overexertion and fear of breathlessness.
Developer Archibald CJ (original),1 Eakin EG et al. (current version)2
E-mail aries@ucsd.edu
Cost Free for educational, clinical, or non-profit research use. For commercial uses or by for-profit organizations, contact the UCSD Technology Transfer Office for licensing.
License required Copyrighted to the University of California.
Self-or rater-administered Self-administered
Time to complete 5-10 minutes
Number of items 24 (21 items related to ADLs associated with varying levels of exertion & 3 questions about limitations and fears of breathlessness)
Domains & categories (#) 1 (while several qualitative experiences are asked, they are treated as general dyspnea)
Name of domains/categories NA
Scaling of items 6-point scale (0 = "not at all" to 5 = "maximal or unable to do because of breathlessness")
Scoring 0-120, higher score is more severe breathlessness.
Test-retest/ reproducibility Test-retest r=0.943

Internal consistency Cronbachs α 0.962
Validity Significant negative correlation with exercise tolerance (6MWD)2

Correlate to self-administered BDI (r=-0.68, p<0.001) and mMRC (r=0.52, p<0.001)4
Responsiveness to PR Found 65% of participants experienced greater than MID improvement in dyspnea post PR among people with ILD5
MID 5 points in COPD5,6, 5-8 points in ILD8
Languages 17
References
  1. Archibald CJ et. al. Can J Rehab. 1987; 1:45-54.
  2. Eakin EG et.al. Chest. 1998; 113:619-624.
  3. Eakin EG et. al. Int J Behav Med. 1995; 2:118-134.
  4. Mahler D et al. CHEST. 2009; 136:1473-1479.
  5. Ryerson CJ et al. Resp Med .2014; 108: 203-210.
  6. Kupferberg DH et. al. J Cardiopulm Rehabil. 2005; 25:370-377.
  7. Ries AL. JCOPD. 2005; 2:105-110.
  8. Chen T et al. Respir Res. 2021; 22: 202-210.
Date of most recent changes December 2022

 

University of Cincinnati Shortness of Breath Questionnaire

  Description
Name of Questionnaire University of Cincinnati Shortness of Breath Questionnaire1
Abbreviation/Alternate Name UCDQ
Description: Measures impact of dyspnea during (1) physical activity (Phys), (2) speech (Speech) and (3) simultaneous speech and physical activity (Comb) in patients with COPD.1
Developer University of Cincinnati
E-mail NA
Cost NA
License required NA
Self-or rater-administered Self-administered
Time to complete 5-10 minutes
Number of items 30
Domains & categories (#) 3, ten items in each domain
Name of domains/ categories Physical, Speech and Combined
Scaling of items Not at all SOB (1), occasional SOB (3), Always SOB or cannot do (5), Not interested (9)
Scoring 0-5 Likert scale
Test-retest/ reproducibility Test-retest 0.76-0.932

Internal consistency Cronbach's α: Phys 0·79, Speech 0·96, Comb 0·823
Validity Correlation coefficient with the MRC 0.74, BDI -0.841
Responsiveness to PR Dyspnea with Speech decreased 60 ±23 to 44 ±20, p<.00013
MID NA
Languages English
References
  1. Lee L et. al. Chest. 1998; 113: 625–632.
  2. Hodgev V et. al. Clin Physiol Funct Imaging. 2003; 23:269-274.
  3. Binazzi B et. al. Respiration 2011; 81:379-385.
Date of most recent changes February 2023

 

Visual Analogue Scale-8 items

  Description
  Description
Name of Questionnaire Visual Analogue Scale 8 items1
Abbreviation/Alternate Name VAS8
Description: A VAS to measure quality of life in chronic lung disease.1 An 8-item questionnaire, one item of which explores dyspnea.
Developer O Hiratsuka & K Kida
Mail Osamu Nishiyama, M.D., Second Department of Internal Medicine, Nagoya University School of Medicine, 65 Tsurumai-cho, Showa-ku, Nagoya 466- 8560, Japan
Cost NA
License required NA
Self-or rater-administered Self-administered
Time to complete 5 minutes
Number of items 1
Domains & categories (#) 8
Name of domains/ categories Well-being, mood, anxiety, dyspnea, headache, housework/job, appetite, social activity.
Scaling of items 10 cm VAS, participant marks on the line where they feel on dyspnea from “unbearable” to “no dyspnea”
Scoring 0-100 per domain, higher score more severe dyspnea.
Test-retest/reproducibility Test-retest dyspnea domain r=0.75.
Validity Dyspnea with SGRQ dyspnea domain r= -0.35, p<.05, and Baseline Dyspnea Index (BDI) r=0.31, p<.05.1

Internal consistency on Total Score Cronbach’s α= 0.85.1
Responsiveness to PR Dyspnea improved post PR from 43+22 to 66+27, p<.01 (+23).2
MID NA
Languages English and Japanese
References
  1. Hiratsuka T et al. Intern Med. 1993; 32: 832–836.
  2. Nishiyama O et al. Respir Med. 2000; 94:1192-1199.
Date of most recent changes November 2022