Appendix 1: Unidimensional scales

Scale Domains covered

Population Validity Reliability Responsiveness and Appropriateness

Format

Visual analogue scale (VAS) (1)

Dyspnoea COPD, CHF, cancer

close correlation with Borg scale (2)

weak reliability in exercise tests two weeks apart (3)

maximal VAS ratings are reproducible in progressive incremental exercise testing, submaximal VAS ratings and relationship between VAS ratings and physiologic indices vary considerably at weekly intervals (4)MCID for decompensated heart failure 21.1 mm (VAS 0-100) (5)

vertical format of the VAS (VVAS) developed and validated for COPD patients (6) and cancer patients (7)

Oxygen Cost Diagram (OCD) (8)

Dyspnoea on exercise

Pulmonary disease

significant correlation with distance walked in 12 min. but not FEV1; good correlation between anxiety and depression (r=0.68) and physical activities (r=-0.9) (9)

no data available no data available Retrospective measure. 100 mm vertical line with descriptive phrases of 13 everyday activities placed at various points along the line. Patients indicate the point above which they think their breathlessness would not let them go; usually further explanation necessary to understand the relationship between the vertical line and the listed activities. The phrases correspond with the oxygen requirements needed by each activity (10;11)

Modified Borg Scale

Dyspnoea on exercise

Pulmonary disease

correlation with breathlessness ratings and FEV1

Borg scores not significantly different across

sensitive at detecting differences in the intensity of dyspnoea reported at

categorical scale with ratio properties, 11 points on a vertical scale with words describing increasing degrees of

1

(12;13) (17, 32)

r=0.88 study days during both maximal and submaximal exercise (14)

different levels of exercise as measured by stair climbs of one, three and five flights in healthy volunteers; during incremental exercise Borg ratings of dyspnoea are not as reproducible as physiologic indices (15)MCID: one point (16)

breathlessness anchored to numbers between ‘0’ (‘nothing at all’) and ‘10’ (‘maximal’)

Numerical rating scale (NRS) (17;18)

Dyspnoea COPD, CHF

High correlation between NRS and visual analogue dyspnoea scale for dyspnoea at present, at rest, after ambulation

no data available Significant difference before and after ambulation (30 feet walking)

written form (tested) or verbal (needs to be validated); scale from 0 (no shortness of breath) to 10 (shortness of breath as bad as can be), grading worst and average breathlessness or the degree of distress

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Appendix 2 Breathlessness-specific scalesName of Scale Domains

coveredNo. of items

Population

Validity Reliability Responsiveness and Appropriateness

Format

Medical Research Council (MRC) dyspnoea scale (19;20)

magnitude of task that causes breathlessness

5 COPD significant correlation with OCD (-0.71) and BDI (-0.83) (45); significant correlation between MRC grade and shuttle distance, SGRQ, CRQ, mood state and EADL

No data available sensitivity too coarse to demonstrate reliable changes in breathlessness following intervention (21)

self-report or interview guide grading the effect of breathlessness on daily activities; categorical scale with yes/no answers

Baseline Dyspnoea Index (BDI)/ Transition Dyspnoea Index (TDI) (22)

magnitude of task, magnitude of effort and functional impairment

3 respiratory disease (predominantly COPD)

BDI: correlation with 12 MW r=0.6 (p<0.001), with FVC r=0.56 (p<0.001), with FEV1 r= 0.41 (p<0.01) ; significant correlation between BDI, MRC scale and OCD; TDI: no relationship to changes in lung function, significant correlation with change in 12 MW (r=0.33, p=0.04)

interrater agreement: baseline focal score 92%, weighted kappa 0.7; transition focal score 90% weighted kappa 0.63

significant improvement in dyspnoea rating in RCT with aminophylline (23)MCID TDI = 1 unit (24)

Interviewer administered; BDI: For each category five grades of breathlessness ranging from severe to unimpaired, BDI focal score (0-12) is obtained by adding the scores from 0 (severe) to 4 (not impaired) for each of the three categories; TDI: to measure changes from a baseline condition through ratings obtained on a 7-point scale (-3 =major deterioration to +3

3

major improvement) for each category; ratings are summed to transitional focal score (-9 to +9)

Breathlessness, Cough and Sputum Scale BCSS (25)

Symptoms (breathlessness, cough, sputum)

3 COPD (FEV1 predicted 20-70%)

Breathlessness: small to moderate correlation with FEV1, peak expiratory flow (PEF), moderate correlation with Borg scale; sputum: correlation with sputum volume; cough: correlation with cough-specific items of st. George's Resp. Quest. (SGRQ); total BCSS moderate correlation with SGRQ small to moderate correlation with SF-36

Crohnbach's alpha 0.94-0.97, intraclass correlation coefficient 0.77-0.78

Responsiveness: significant improvements in BCSS total and item scores in patients having improved during course of treatment; breathlessness and total scores differentiated pts. by disease severity and rescue medication use; MCID = +/- 1 point (26)

designed as daily diary, 5-point-Likert scale (0 to 4), total score 0 to 12

Chronic lung disease (CLD) severity index (27)

shortness of breath, wheeze, cough

6 chronic lung disease (chonic bronchitis, emphysema, asthma), only men

content derived from other questionnaires, research, experts; criterion validity: dyspnoea suscale significant association with SF-36 (except bodily pain), cough subscale significant correlation with SF-36 scales except role limitations, wheezing subscale significant correlations with all SF-

Crohnbach's alpha ≥ 0.69, moderate correlation of the three subscales cough nd wheezing (r=0.31), cough and dyspnea (r=0.22), wheezing and dyspnoea (r=0.24); internal consistency 0.73

no data available

4

36 scales; CLD severity index significant correlation with SF-36

University of California St.Diego (UCDS) Shortness of Breath Questionnaire (28)

ADL, fear of overexertion, shortness of breath

24 COPD, cystic fibrosis, post transplant

positive correlation with Borg Scale, depression, RV/TLC; negative correlation with physiologic measures, health-related quality of life, exercise tolerance

Crohnbach's alpha 0.96, item-total correlation 0.49 – 0.87

no data available; MCID 5 units (29)

indicates the severity of shortness of breath over a variety of daily activities (0= not at all, 5= maximal or unable to do because of breathlessness; sum scores 0 - 120)

University of Cincinnati Dyspnoea Questionnaire (30;31)

breathlessness during physical activity, during speaking activity, when speaking during physical activity

30 COPD, emphysema, fibrosis, sarcoidosis, asthma

citerion validity: strong correlation between physical and combined section with BDI, MRC, OCD, Borg, VAS; construct validity: UCDQ and symptom scores physical activity r=0.6, speech activity r=0.35, combined r=0.63 (78)

Crohnbach's alpha 0.92 (physical), 0.95 (speech), 0.91 (combination variables); high correlation between three sections (0.80 to 0.86); no significant differences between self- or experimenter-adminstered format; test-retest no significant differences within 1 week, ICC physical 0.87, speech 0.76, combined 0.93

least dyspnoea during speech activities, more during physical activities, most when speech and physical activities were combined

self-administered or experimenter administered with same questions, shortness of breath rating on 5-point-scale (1= no shortness of breath, 5= activities always causing shortness of breath)

Feinstein's magnitude 3 congestive compared to BDI/TDI No data available overall change after derived from

5

Index of Dyspnoea (32)

of task evoking dyspnoea and fatigue, magnitude of pace (effort), associated functional impairment

heart failure

total concordance 46%, agreement difference by only 1 category 44%, global improvement ratings: proportion of agreement 87% perfect agreement and within 1 category; correlation with changes in exercise duration Pearson pace of task r=0.28, magnitude of task 0.37, functional impairment 0.30, aggregate score 0.37

treatment with lisinopril 1.35 units, raise in individual components magnitude of task 21% (0.39), magnitude of pace 27% (0.48), functional capacity 27% (0.47)

BDI/TID; completed by health professionals, 3 components, each rated on a scale from 0 to 4; 0 (worst condition) to 12

Cancer dyspnoea scale (CDS) (33)

sense of effort, sense of anxiety, sense of discomfort

12 cancer content derived from patient interviews and experts; construct validity good, interscale correlation 0.48; convergent validity with VAS 0.72, with Borg 0.67, with performance status 0.23, with state 0.23, with trait 0.32

Crohnbach's alpha average 0.86, average test-retest reliability 0.66

significant decrease of CDS score after inhalation of 20 mg furosemide (34)

questionnaire composed of 3 factors and 12 items; the maximum total score is 48: 20 points for sense of effort, 16 for sense of anxiety and 12 for sense of discomfort. A higher score reflects more severe dyspnoea.

Breathlessness Assessment Guide (35)

underlying pathology, symptoms, adapted MRC dyspnoea

9 lung cancer

content derived from experts, patients and clinicians

no psychometric testing

no psychometric testing interviewer administered, 2 questions adapted from MRC respiratory symptoms

6

scale, breathlessness frequency, timing, triggers, coping strategies, limitations, feelings, 3 breathlessness VAS over last 24 h (best, worst, distress)

questionnaire and dyspnoea scale, 3 VAS

Dyspnoea Exertion Scale (36)

magnitude of task that causes breathlessness

5 cancer no data available no data available no data available orientated on Fletcher emphysema scale but for patients being breathless on minor exertion

Dyspnoea Assessment Questionnaire (36)

intensity, temporal, constrictive pressure, pain, sound quantity, dry sound, wet sound, energy, air quantity, respiratory effort, loss

16 cancer no data available no data available significantly lower DQQS, PTTS, VAS24 after nebulized morphine (37)

pts. are asked to look at each category and choose the word which best describes their breathlessness; each word has a pre-assigned score; quantitative way of measuring qualitative words used to describe

7

of power, fear, depression, dread, suffocation, illness

dyspnoea; Total Severity Score TSS (max. 55.06), Percentage Total Severity Score obtained by dividing TSS by maximum score; Dyspnoea Quality-Quantity Score (DQQS) = (TSS+VAS24)/2; developed along the model of the McGill Pain Questionnaire

MCID = Minimal clinical important difference

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Appendix 3 Multidimensional disease-specific scales

Scale Domains covered

No. of items

Popu-lation

Validity Reliability Responsiveness and Appropriateness

Format

Chronic respiratory disease questionnaire (CRQ) (38)

Dyspnoea, fatigue, emotional function, mastery

20 COPD (FEV1 < 70%)

good agreement between predicted and observed correlations (weighted kappa 0.51); moderate correlations between changes in questionnaire responses and changes in related measurements (FEV1, six minute walk, OCD, slow vital capacity); criterion validity: significant correlation of fatigue, emotional function, mastery with subscales of SCL-90; no significant correlation of dyspnoea with somatisation subscale of SCL-90

reproducability: similar mean scores for all four dimensions at 6 administrations, variation coefficient ≤ 12% for all 4 dimensions; Crohnbach's alpha dyspnoea 0.51, fatigue, emotion, mastery 0.71-0.88; test-retest reliability 0.90-0.93 for fatigue, emotion and mastery

substantial improvements on follow-up after pharmacological therapy and rehabilitation programme in all four dimensions

interviewer-administered; each patient selects the 5 most bothersome activities causing breathlessness during the past 2 weeks from a list of 26 activities, severity of breathlessness is scored from 1 (extremely short of breath) to 7 (not at all short of breath); dyspnoea strictly individualised; rating of fatigue (four items), emotional function (seven items) and mastery or feeling of control over the disease (four items); scores are added to overall CRQ dyspnoea score (5-35), then divided by 5 (for the five activities) to provide a mean score

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(range 1 to 7). A higher score represents a better ‘quality of life’.

St.George's Respiratory Questionnaire SGRQ (39)

Symptoms (cough, sputum, breathlessness), physical activity, impact (employment, control of health, panic, stigmatization, medication, disturbances of daily life)

76 COPD, asthma, bronchiectasis

SGRQ symptom score significantly higher in pts with daily cough and sputum production, frequent or daily wheeze; SGRQ impact score good correlation with MRC dyspnoea scale, 6-MWD, HADS; SGRQ impact score good correlation with MRC dyspnoea grade, HADS, SIP; SGRQ total score good correlation for HADS, SIP, MRC dyspnoea grade

repeatability: intraclass correlation for total SGRQ r=0.92 in COPD, component sections: SGRQ symptoms r=0.91, SGRQ activity r=0.87, SGRQ r=0.88; change over 1 yr: total SGRQ score rose (worse overall health) in more breathless pts and fell in pts with reduction of dyspnoea

SGRQ scores significant improvement in treatment group (nedocromil) (40). MCID = 4 units slightly efficacious treatment, 8 units moderately efficacious treatment, 12 units for very efficacious treatment (41)

supervised, Part 1 (Questions 1 to 8, 5-point Likert scale) covers the patients’ recollection of their symptoms over a preceding period that may range 1 month to 1 year. Part 2 (questions 9 to 16, dichotomous yes/no) addresses the patient's current state (i.e. how they are these days). Each of the three sections is scored separately from 0 to 100% where zero represents no impairment of quality of life at all. A summary score utilising the responses to all the items is the total SGRQ score, also ranging from 0 to 100%.

MRC Respiratory Symptoms

cough, phlegm, breathlessness,

21 pulmonary patients

only phlegm questions adequately validated, wheeze, cough and

consistency of response 80% for symptom questions,

no data available interviewer-administered; yes/no answers, developed

10

Questionnaire (20)

wheezing, chest illness, smoking

chest illness questions have not specifically been validated; strong correlation with other measures of dyspnoea impairment (r=-0.53 to 0.83)

99% for smoking habits

for epidemiological and not clinical use (42)

American Thoracic Society Respiratory Questionnaire (ATS-DLD-78 questionnaire) (43)

cough, phlegm, breathlessness, wheezing, chest illness, occupation, smoking, family history

78 pulmonary patients; male patients

concurrent validity: correlation with MRC scale (> 0.5)

no data available no data available based on MRC dyspnoea questionnaire; yes/no answers; dyspnoea graded from 0 (non, not troubled with breathlessness except with strenuous exercise) to 4 (very severe, too breathlessness to leave the house or breathlessness when dressing)

Seattle Obstructive Lung Disease Questionnaire (SOLDQ) (44)

physical function, emotional function, coping skills, treatment satisfaction

29 COPD; predominantly male patients (95%)

content validity: patient interviews, medical literature, clinical experience, previous research; concurrent validity: comparison with CRDQ, highest correlations between physical function and dyspnoea, emotional function and emotional burden,

Crohnbach's alpha: physical function 0.93, emotional function 0.79, coping skills 0.82, treatment satisfaction 0.9; test-retest intraclass correlation coefficient physical function 0.87, emotional function 0.79, coping skills

significant improvement 4 to 6 weeks after completing treatment (20% on physical function, 23% on emotional function, 27% on coping skills)MCID = 5 points (45)

questionnaire modeled on CRQ, computer scannable; sum of the scores in each dimension is converted to scores ranging from 0 (worst) to 100 (best). No overall score can be generated, each of the scales is scored separately

11

coping skills and mastery

0.7, treatment satisfaction 0.64

Pulmonary Function Status Scale (PFSS) (46)

daily activities/social functioning (including dyspnoea), psychological functioning, sexual functioning

35 COPD; predominantly male patients (56%)

Content validity: expert opinion; concurrent validity: moderate to strong correlations with SIP (r= -0.54) and 12 MWD (r=0.62); discriminant validity: recognition of changes in activities post hospitalization and pulmonary rehabilitation

Crohnbach's alpha: daily activity/social functioning 0.93, psychological functioning 0.092, sexual functioning 0.86, total score 0.93; test-retest correlation: total scale rho=0.75, daily activities/social functioning rho=0.95, psychological functioning rho=0.84, sexual functioning rho=0.5

significant improvement of PFSS 1 year after short-stay pulmonary rehabilitation in COPD patients (47)

variable Likert-type scaling; mean score for each subscale and total score, responses are weighted, the lower the score the more impairment of functional status

London Chest Activity Daily Living Scale (48)

Self-care, domestic, physical, leisure

15 COPD content derived from patients, normal subjects, literature; construct validity: significantly greater disability in COPD population compared with healthy older people, concurrent validity: correlation with SGRQ activity and total score, significant correlation with EADL score, HADS anxiety,

test-retest: intraclass correlation for total LCADL 0.96, self-care 0.78, domestic 0.88, physical 0.89, leisure 0.89; internal consistency Crohnbach's alpha 0.98

sensitity: significant improvement in dyspnoea after rehabilitation in total LCADL score and in all components besides domestic component

designed to measure dyspnoea during routine daily activities, higher scores represent maximal disability

12

exercise performance; strong correlation between MRC dyspnoea grades 3-5 and total LCDL score

Pulmonary Functional Status & Dyspnea Questionnaire (PFSDQ) (49)

domains (functional status and dyspnoea), subscales (self care, mobility, home management, eating, recreation and social)

164 pulmonary patients; male patients

content from patients, experts; concurrent validity; correlations with FEV1%, FVC%, SF-36 physical, CRQ, 6 MWD

Crohnbach's alpha of each subscale with each component 0.88 to 0.94

discriminated between groups following pulmonary rehabilitation vs. lung volume reduction surgery; significant improvement of the activity subscale after antidepressant therapy

activity component: 79 activities, rating from 0 to 7; dyspnoea component 5 general questions, followed by ratings of intensity of shortness of breath experienced with performance of the same 79 activities

Modified pulmonary functional status and dyspnoea questionnaire (PFSDQ-M) (50)

dyspnoea with activity (DA), changes in activity (CA), fatigue with activity (FA)

40 COPD construct validity: CA items 63.1% of variance, 66.6% to DA items, 67.7% to FA items

Crohnbach's alpha 0.95 (DA), 0.93 (CA), 0.95 (fatigue); test-retest: r=0.7 for CA, 0.83 for DA, 0.79 for FA

responsiveness: DA no differences in total scores, significant differences with specific activities; further testing necessary

CA (one subscale), DA (one subscale and 5 general survey questions) and FA subscales (one subscale and 5 general survey questions) with an 11-point scale ranging from 0 to 10; validation only in male subjects, < 8% missing data

Airways Questionnaire 20 (AQ20) (51)

activities, symptoms, emotional functioning, environmental

20 COPD, asthma

significant correlations with SGQR, CRQ, HADS, OCD

Crohnbach's alpha 0.81

responsiveness: significant improvement after 3 months antiobstructive

three responses: 1 = yes, 0= no and not applicable; sum score 0= no impairment; also AQ30 available

13

stimuli treatment but no advantage over AQ 20; AQ20 less disciminative power for patients with mild qol impairment; validation for COPD patients in Japanese, validation for asthma in English; 2.5 +/- 0.9 min

Clinical COPD Questionnaire CCQ (52)

symptoms (shortness of breath, cough, phlegm), functional state (breathlessness during physical activities), mental state (concerns, depression)

10 COPD content from patients, experts, literature; construct validity: significant correlation between CCQ, SF-36 and SGRQ

Crohnbach's alpha total score 0.91, symptom 0.78, functional 0.89, mental state 0.80; intraclass correlation 0.94

significant improvement after 2 months smoking cessation; discrimination between moderate to severe and mild COPD and healthy (ex)smokers and COPD

recalls experience of last week, 24 h version available, 7-point scale (0=asymptomatic/no limitation to 6=extremely symptomatic/totally limited); overall clinical score and scores of domains: calculating by adding all scores and dividing by this sum by the number of questions

Respiratory Quality of life Questionnaire (RQLQ) (53)

physical, functional, social problems, breathlessness

20 COPD construct validity: Pearson correlation between RQLQ and SF-36 0.54-0.76. breathlessness subscale: good correlation with MRC dyspnoea scale, other subscales good to

Crohnbach's alpha 0.85-0.95, test-retest: intraclass correlation 0.86-0.94, after 12 months ICC 0.80-0.93

higher effect sizes and responsiveness in RQLQ subscales in patients reporting a change after one year

derived from Australian Asthma Quality of Life Questionnaire (AQLQ), total score and subscales, scores range from 0 (least) problems to 10 (maximal problems or

14

moderate correlation with MRC dyspnoea scale and exercise

symptoms), over last 4 weeks

Quality-of-life for Respiratory Illness Questionnaire (QOL-RIQ) (44)

breathlessness, physical problems, emotions, general activities, situation triggering breathing problems, daily and domestic activities, social activities, relationships and sexuality

55 COPD, asthma

content from literature, experts and patients; construct validity: significant correlation between illness severity indicators and domain subscales r=0.23-0.48, with general QOL r=0.65

Crohnbach's alpha 0.84-0.88; split-half reliability 0.68-0.89 for domain subscales, 0.92 for total scale

all QOL-RIQ subscales and total score showed statistically significant improvement after inpatient rehabilitation, MCID = 0.5 on 7-point scale (54)

for research and clinical practice

10 item Respiratory Illness Questionnaire-monitoring 10 (RIQ-MON 10) (55)

physical and emotional complaints, physical and social limitations

10 mild to moderate COPD

content from patients, experts; criterion validity: high correlation with original instrument (0.89 -0.92), moderate to low correlations with MOS-SF26, COOP-charts

Intraclass correlation 0.82

discriminated between patients with high and low scores on MOS-SF36, subgroups of COOP-charts

 

VAS8 (56) well-being, mood, anxiety, dyspnoea, headache, appetite,

8 COPD significant correlation total VAS8 with BDI (r=0.55), with SGRQ subscales (r=0.42) and total score (r= 0.74)

Crohnbach's alpha 0.85 VAS8, SGRQ 0.8

inferior distribution compared to SGRQ; after 3 months pulmonary rehabilitation

8 VAS, total score is sum of scores for each item

15

housework or job, social activity

significant improvement of VAS8 scores except housework or job

Lung Cancer Symptom Scale (LCSS) (57)

physical (including breathlessness), symptomatic distress, activity level, quality of life

9 lung cancer

content from patients, physicians, oncology nurses perspectives; construct validity: significant correlation for all items of two LCSS, except for hemoptysis for the patient scale; moderate correlation for fatigue, pain and loss of appetite with KPS, moderate to high correlation for KPS and three summation items; criterion validity: moderate to high significant correlations with subscales of SIP, POMS, ATS questionnaire, Mc Gill Pain Questionnaire short form, KPS 0.4-0.67 for LCSS patient scale, 0.54-0.65 for the LCSS observer scale

Crohnbach's alpha: 0.94 for POMS, 0.93 for BSI, 0.91 for SF-MPQ; Crohnbach's alpha for LCSS patient scale 0.82, 0.75 for observer form; interrater-reliability 0.95-1; test-retest reliability r>0.75

discriminated patients with lower and higher KPS (58)

two scales: patient and observer (health care professional); patients: VAS for 6 symptoms, total symptom distress, activity level and quality of life; observer: five-point categorical scale for intensity of 6 major symptoms after patient interview, categories 100 (none), 75 (mild), 50 (moderate), 25 (marked), 0 (none); time frame past day; version with NRS developed (59)

MND dyspnoea, 16 MND highly significant Crohnbach's alpha no data available modeled on CRQ; 16

16

Dyspnoea Rating Scale (MDRS) (60)

fatigue, emotional function, mastery

correlation with VAS and Borg scale, dyspnoea domain highly correlated with HADS (anxiety highly significantly correlated with dyspnoea, depression no significance), no relationship between subjective dyspnoea and fatigue and functional status (ALS functional rating scale)

0.84, test-retest reliability no significant changes in respiratory symptoms over 7 days; no test of the ability of the MDRS to detect change.

questions each rated on a five-point scale 0-4, with low scores indicating minimal symptoms and high scores maximal symptoms. Self-administered or answered with assistance, patients identify five activities of daily living which may make them feel breathless and then rate their degree of dyspnoea on a five-point Likert scale which quantifies the severity.

revised ALS Functional Rating Scale (ALSFRS-R) (61)

gross motor tasks, fine motor tasks, bulbar functions, respiratory function

12 MND construct validity: correlation coefficient ALSFRS-R with ALSFRS 0.99, with SIP -0.72

Crohnbach's alpha raw value 0.73, standardized 0.71

no data available normally self-administered, but ratings often performed by health care providers; revised version of ALSFRS with three items on breathing replacing the original breathing scales; each question rated from 0 (=total dependence/helpless) to 4 (=normal)

MCID = Minimal clinical important difference

17

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