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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 QuestionnaireBaseline Dyspnea Index & Translational Dyspnea Index1
Abbreviation/Alternate NameBDI & 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).
DeveloperDonald A Mahler
E-maildonald.a.mahler@hitchcock.org
CostFees apply to funded academic users, commercial uses. No fees for students, non-funded academic users and clinical practice.2
License requiredPermission required and signed user agreement2
Self-or rater-administeredRater or self-administered
Time to complete10 minutes
Number of items24
Domains & categories (#)3
Name of domains/categoriesFunctional Impairment, Magnitude of Task, Magnitude of Effort. Recall: during the last two weeks
Scaling of itemsFive 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).
ScoringRange 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 PRTDI change 2.3 point change post PR compared to controls (0.2 point change)3,7
MIDMID Change of ≥1 unit6,8
Languages73 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 changesNovember 2022


 

Borg CR10

 Description
Name of QuestionnaireBorg’s 0-10 Category Ratio Scale1,2
Abbreviation/Alternate NameBorg 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).
DeveloperGunnar Borg
E-mailhttps://eprovide.mapi-trust.org/instruments/borg-dyspnea-scale
CostFee schedule at https://borgperception.se/obtain-a-license/
License requiredCopyright Borg CR10 scale © Gunnar Borg, 1982, 1998, 2004
Self-or rater-administeredSelf-administered
Time to complete<1 min
Number of items1
Domains & categories (#)N/A
Name of domains/categoriesN/A
Scaling of items11, descriptors range from “nothing at all” (0) to “maximal” (10). A rating of >11, selected for “Absolute Maximum/Highest Possible”.
Scoring0-10
Test-retest/reproducibilityTest-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 PROutpatient 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
Languages86 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 changesDecember 2022


 

Breathlessness Catastrophizing Scale

 Description
Name of QuestionnaireBreathlessness catastrophizing Scale1
Abbreviation/Alternate NameBCS
Description:Adapted from the pain catastrophizing scale, evaluates catastrophizing with breathlessness.
DeveloperBK Soloman et al.
E-mailbrahm.solomon@gmail.com
CostFree
License requiredN/A
Self-or rater-administeredSelf-administered
Time to complete5-10 minutes1
Number of items13
Domains & categories (#)NA
Name of domains/ categoriesNA
Scaling of items5-point scale 0=not at all, 4= all the time.
ScoringTotal=sum of 13 items. Range from 0-52 (52 more severe).
Test-retest/ reproducibilityInternal consistency Cronbach’s α 0.962
ValidityContent 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 PRMean 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
MIDNA
LanguagesEnglish
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 changesJanuary 2023


 

Chronic Respiratory Questionnaire-Dyspnea domain

 Description
Name of QuestionnaireChronic Respiratory Questionnaire- Dyspnea domain (only)1
Abbreviation/Alternate NameCRQ-D
DescriptionThe 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.
DeveloperGH Guyatt, H Schünemann McMaster University and modified by University Hospitals of Leicester
E-mailmilo@mcmaster.ca and pulmonaryrehab@uhl-tr.nhs.uk (modified)
CostContact McMaster Industry Liaison Office (MILO) milo@mcmaster.ca


For modified Free for own use. Cost £27 + P&P
License requiredYes. 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-administeredInterviewer1 or self-administered2
Time to complete5 minutes for the domain
Number of items5 (dyspnea)
Domains & categories (#)4
Name of domains/ categoriesDyspnea, fatigue, emotion and mastery
Scaling of itemsExtremely breathless (1), Very (2), Quite (3), moderately (4), Some (5), A little (6), No breathlessness (7)
ScoringMean score 1-7 on domain
Test-retest/ reproducibilityTest-retest- ICC 0.832


Internal consistency- range α= 0.53 to 0.91 on dyspnea domain2,4,5,6
ValidityContent validity was not explored for the dyspnea domain due to low reliability of the comparator measure.2
Responsiveness to PRVariable response to PR 0.75 95% CI 0.56 to 1.038
MIDMID= 0.5 per domain7
Languages46
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 changesDecember 2022


 

Clinical COPD Questionnaire-Dyspnea

 Description
Name of QuestionnaireClinical COPD Questionnaire
Abbreviation/Alternate NameCCQ
Description:A health status measure of clinical control of COPD. One domain evaluates symptoms (dyspnea, cough and phlegm).
DeveloperVan der Molen et al.
E-mailt.van.der.molen@med.rug.nl
CostNo charge for: students, physicians, clinical practice or academic users. Fees may apply for: healthcare organizations, commercial users & internet companies.
License requiredCopyrighted. CCQ© may not be changed, translated or sold (paper or software) without permission of Thys van der Molen.
Self-or rater-administeredSelf-administered
Time to complete<1 minute
Number of itemsTotal 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/ categoriesSymptoms, functional state, mental state
Scaling of items7-point likert scale (0-6). Lower scores indicate better symptoms.
ScoringMean score of items on symptom domain 0-32 divided by 4 items.
Test-retest/ reproducibilityTest-retest for total score ICC 0.941


Internal consistency Cronbach’s α for symptoms 0.65-0.782
ValidityContent 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 PRResponsive to rehabilitation with improvements of -0.4 points.3
MIDMID 0.42, 3
LanguagesTranslated 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 changesDecember 2022


 

Disability Related to COPD Tool

 Description
Name of QuestionnaireDisability Related to COPD Tool
Abbreviation/Alternate NameDIRECT
Description:Assesses disability due to breathlessness i. e. the physical limitation or functional impact of breathlessness.
DeveloperAguilaniu B; Gonzalez-Bermejo J; Regnault A; Arnould B; Mueser M; Granet G; Bonnefoy M; Similowski T; Dias-Barbosa C
E-mailantoine.regnault@mapivalues.com
CostFreely available in original publication
License required© 2011, Pfizer and Boehringer Ingelheim
Self-or rater-administeredSelf
Time to complete< 5 min
Number of items10
Domains & categories (#)4
Name of domains/categoriesBasic Activities of Daily Living (BADL); Instrumental ADL (IADL); Advanced ADL (AADL); Impact on daily life.
Scaling of itemsRating 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.
ScoringA single, total score (TS) is reported (0–34). Developers propose score >10 indicates noticeable & >20 high levels of disability.
Test-retest/ reproducibilityCronbach’s α=0.947.1
ValidityConcurrent: 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 PRChange after PR −1.9 (−2.6 to −1.2)2
MID≥2 units for the DIRECT score2
LanguagesFrench (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 changesDecember 2022


 

Dyspnoea-12

 Description
Name of QuestionnaireDyspnoea-121
Abbreviation/Alternate NameD-12
Description:Description of breathlessness related to the different qualitative dimensions of breathlessness. The focal period is “These days”.
DeveloperJanelle York
E-mailj.yorke@salford.ac.uk
CostNone
License requiredNo
Self-or rater-administeredSelf-administered
Time to complete<5 min
Number of items12
Domains & categories (#)Physical (7 items) and Affective (5 items)
Name of domains/ categoriesPhysical, Affective
Scaling of items4-point Likert scale, rated 0= “none”, 1= “mild”, 2= “moderate”, 3= “severe”
ScoringSummation 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
LanguagesFrench, 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 changesDecember 2022


 

King’s Brief Interstitial Lung Disease questionnaire©

 Description
Name of QuestionnaireKing’s Brief Interstitial Lung Disease questionnaire©1
Abbreviation/Alternate NameK-BILD©
Description:Health status questionnaire for patients with ILD.
DeveloperSurinder S Birring
E-mailkbildenquiries@gmail.com
CostUnknown
License requiredCopyright https://www.kbild.com/
Self-or rater-administeredSelf-administered
Time to complete<1 minute for breathlessness
Number of items15= psychological (7), breathlessness & activities (4), chest symptoms (3), financial status (1).
Domains & categories (#)3
Name of domains/categoriesPsychological (KBILD-P); Breathlessness & activities (KBILD-B);

Chest symptoms (KBILD-C) & a Total Score (KBILD-T)
Scaling of items1-7 likert scale with verbal descriptors of frequency.
ScoringTotal Score (TS) and each domain range from 0-100. Higher scores indicate better HRQoL.
Test-retest/ReproducibilityTest-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
ValidityFVC (% 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 PRResponsive to PR,2 Supplementary oxygen,3 medical management of cough,4 longitudinal change,5 associated with survival in ILD & IPF.6
MIDMID 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
LanguagesFrench, 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 changesDecember 2022

London Chest Activity of Daily Living Questionnaire

 Description
Name of QuestionnaireLondon Chest Activity of Daily Living Questionnaire1
Abbreviation/Alternate NameLCADL
Description:Assesses an individual’s perception of dyspnea during ADLs as a result of respiratory disease.
DevelopersGarrod R, JC Bestall, EA Paul, JA Wedzicha, PW Jones
E-mailrachelgarrod1@gmail.com
CostNone
License requiredLCADL© St George’s Hospital Medical School, November 2007. All rights reserved
Self-or rater-administeredSelf-administered
Time to complete5 minutes
Number of items15
Domains & categories (#)4
Name of domains/ categoriesSelf-care, domestic, physical, leisure activities
Scaling of items1 no breathless, 2 moderate, 3 very breathless, 4 can no longer do, 5 need someone else to do this, 0 wouldn’t do anyway.
ScoringTotal Score 0-75 where 75 is more severe breathlessness
Test-retest/reproducibilityTest-retest ICC= 0.93 [0.82-0.97]2

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

28% of TS distinguished the functional status in COPD4
MID4 points TS.5
LanguagesEnglish, 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 changesDecember 2022


 

Medical Research Council Dyspnea Score

 Description
Name of QuestionnaireMedical Research Council Dyspnea Score1
Abbreviation/Alternate NameMRC, mMRC (modified)
Description:Establish grade of breathlessness based on activity level.
DeveloperMedical Research Council
E-mailcorporate@mrc.ukri.org
CostFree
License requiredPermission 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-administeredSelf-administered
Time to complete<1 minute
Number of items1
Domains & categories (#)NA
Name of domains/categoriesNA
Scaling of items1-5 MRC, or 1-5 including 5a and 5b for modified MRC (mMRC). High scores indicate more severe breathlessness.2
Scoring1-5
Test-retest/ reproducibilityTest-retest in COPD ICC r=0.823
ValidityScores 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 PRPoor response to PR.5,6,
MID1 point7
LanguagesEnglish
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 changesJune 2023


 

Multidimensional Dyspnea Profile

 Description
Name of QuestionnaireMultidimensional Dyspnea Profile1
Abbreviation/Alternate NameMDP
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).
DeveloperR Banzett
E-mailrbanzett@bidmc.harvard.edu
CostFree for student and individual researchers, unfunded studies and individual clinicians. Fee (unspecified) for funded studies for commercial use, healthcare organisations and IT companies.
License requiredMultidimensional Dyspnea Profile© 2011 R.B. Banzett. All Rights Reserved. Available via MAPI research trust.
Self-or rater-administeredSelf or assisted
Time to complete5-10 min
Number of items11
Domains & categories (#)3 domains and possible sub-scores
Name of domains/ categoriesOverall unpleasantness (A1), Immediate Perception (IP), Emotional Response (ER)
Scaling of items0-10 numeric rating scale, 0 = none and 10 = as much as I can imagine.
ScoringTotal 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/reproducibilityTest-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
ValidityConcurrent with CATS, HADS and mMRC.4
Responsiveness to PRYes5,6
MIDMixed respiratory diseases: A1 =1 unit, IP=5, ER=3.7
LanguagesDanish, 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 changesMarch 2023


 

Pulmonary Functional Status & Dyspnea Questionnaire

 Description
Name of QuestionnairePulmonary Functional Status & Dyspnea Questionnaire
Abbreviation/Alternate NamePFSDQ
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.
DeveloperSuzanne C. Lareau
E-mailSuzanne.lareau@ucdenver.edu
CostNone
License requiredContact developer for use
Self-or rater-administeredSelf
Time to complete17 minutes initially, 15 minutes on repeat testing.
Number of items164
Domains & categories (#)2 domains 6 categories
Name of domains/ categoriesDomains: activity and dyspnoea.

Categories: self care, mobility, home management, eating, recreation, and social.
Scaling of itemsModified 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.
ScoringTotal 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/ reproducibilityTest-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
ValidityContent-Clinical experts and findings related to expected theoretical relationships.1
Responsiveness to PRDiscriminated 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
MIDNA
LanguagesEnglish. 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 changesJanuary 2023


 

Pulmonary Functional Status & Dyspnea Questionnaire-Modified Dyspnea Domain

 Description
Name of QuestionnairePulmonary Functional Status & Dyspnea Questionnaire-Modified
Abbreviation/Alternate NamePFSDQ-Mdys
Description:Modified from PFSDQ. Assesses frequency & intensity of dyspnea (with and without activities).1
DeveloperSuzanne C. Lareau
E-mailSuzanne.lareau@ucdenver.edu
CostNone
License requiredContact developer for use
Self-or rater-administeredSelf
Time to complete7 minutes
Number of items40
Domains & categories (#)3, activities, dyspnea, fatigue
Name of domains/categoriesDyspnea with 10 activities, frequency and intensity of dyspnea under 5 conditions
Scaling of itemsModified Likert 0-10 with verbal descriptors. Degree of dyspnea, 0 = none, 1-3 = mild, 4-6 = moderate, 7-9 = severe, 10 = very severe.
ScoringTotal 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/reproducibilityTest-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
ValidityContent 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 PRYes3,4
MID5 points on PFSDQ-Mdys4
LanguagesChinese, 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 changesFebruary 2023


 

Saint George’s Respiratory Questionnaire - Symptom Domain

 Description
Name of QuestionnaireSaint George’s Respiratory Questionnaire1
Abbreviation/Alternate NameSGRQ
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
DeveloperPaul Jones on behalf of Saint George’s University
E-mailpjones@sgul.ac.uk
CostThe St. George's University of London Medical School grants permission for clinicians to use the SGRQ without charge.
License requiredFor 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-administeredSelf-administered
Time to complete<5 minutes for domain
Number of items8 for symptom domain
Domains & categories (#)3-activity, symptoms & impacts domains
Name of domains/categoriesSymptoms
Scaling of itemsVaries with question. Items weighted
ScoringRange=0-100 (higher score more severe limitations).
Test-retest/ reproducibilityTest-retest (at 2-3 weeks) 0.91 for symptoms2


Internal consistency for Asthma r=0.91 COPD r=0.92
ValidityConcurrent1,2


Symptoms with MRC r=0.13, p<001; 6MWD r=.07, p<.01; FEV1 r=.01, p=ns2
Responsiveness to PRResponsive on symptoms does not often meet MID3,5,6
MIDIn general 4 points per domain,4 however 7 pts with PR7
Languages76 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 changesMarch 2023


 

University of California, San Diego Shortness of Breath Questionnaire

 Description
Name of QuestionnaireUniversity of California, San Diego Shortness of Breath Questionnaire1
Abbreviation/Alternate NameUCSD 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.
DeveloperArchibald CJ (original),1 Eakin EG et al. (current version)2
E-mailaries@ucsd.edu
CostFree 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 requiredCopyrighted to the University of California.
Self-or rater-administeredSelf-administered
Time to complete5-10 minutes
Number of items24 (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/categoriesNA
Scaling of items6-point scale (0 = "not at all" to 5 = "maximal or unable to do because of breathlessness")
Scoring0-120, higher score is more severe breathlessness.
Test-retest/ reproducibilityTest-retest r=0.943


Internal consistency Cronbachs α 0.962
ValiditySignificant 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 PRFound 65% of participants experienced greater than MID improvement in dyspnea post PR among people with ILD5
MID5 points in COPD5,6, 5-8 points in ILD8
Languages17
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 changesDecember 2022


 

University of Cincinnati Shortness of Breath Questionnaire

 Description
Name of QuestionnaireUniversity of Cincinnati Shortness of Breath Questionnaire1
Abbreviation/Alternate NameUCDQ
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
DeveloperUniversity of Cincinnati
E-mailNA
CostNA
License requiredNA
Self-or rater-administeredSelf-administered
Time to complete5-10 minutes
Number of items30
Domains & categories (#)3, ten items in each domain
Name of domains/ categoriesPhysical, Speech and Combined
Scaling of itemsNot at all SOB (1), occasional SOB (3), Always SOB or cannot do (5), Not interested (9)
Scoring0-5 Likert scale
Test-retest/ reproducibilityTest-retest 0.76-0.932


Internal consistency Cronbach's α: Phys 0·79, Speech 0·96, Comb 0·823
ValidityCorrelation coefficient with the MRC 0.74, BDI -0.841
Responsiveness to PRDyspnea with Speech decreased 60 ±23 to 44 ±20, p<.00013
MIDNA
LanguagesEnglish
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 changesFebruary 2023


 

Visual Analogue Scale-8 items

 Description
 Description
Name of QuestionnaireVisual Analogue Scale 8 items1
Abbreviation/Alternate NameVAS8
Description:A VAS to measure quality of life in chronic lung disease.1 An 8-item questionnaire, one item of which explores dyspnea.
DeveloperO Hiratsuka & K Kida
MailOsamu Nishiyama, M.D., Second Department of Internal Medicine, Nagoya University School of Medicine, 65 Tsurumai-cho, Showa-ku, Nagoya 466- 8560, Japan
CostNA
License requiredNA
Self-or rater-administeredSelf-administered
Time to complete5 minutes
Number of items1
Domains & categories (#)8
Name of domains/ categoriesWell-being, mood, anxiety, dyspnea, headache, housework/job, appetite, social activity.
Scaling of items10 cm VAS, participant marks on the line where they feel on dyspnea from “unbearable” to “no dyspnea”
Scoring0-100 per domain, higher score more severe dyspnea.
Test-retest/reproducibilityTest-retest dyspnea domain r=0.75.
ValidityDyspnea 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 PRDyspnea improved post PR from 43+22 to 66+27, p<.01 (+23).2
MIDNA
LanguagesEnglish 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 changesNovember 2022