DYSPNEA AND QUALITY OF LIFE IN CHRONIC RESPIRATORY FAILURE ;

SCALES AND QUESTIONNAIRES

Prof. Dr. Öznur AKKOCA YILDIZ

Ankara University, Faculty of Medicine, Department of Pulmonary Medicine

DYSPNEA

• Dyspnea is an uncomfortable awareness of breathing

• or an increased inspiratory difficulty effort• or can not get enough air in

• A subjective sensation • Differences in language, race, culture, sex and

previous experience can all change the perception

DYSPNEA

• The assessment of dyspnea is a critical part of patient evaluation and management when cardiopulmonary disease is present

• The patient’s perception of dyspnea does not necessarily increase with worsening lung function

• It has emphasized dyspnea during everyday activity as an important indicator of disease impact, severity and survival

DYSPNEA

The 2 purpose of measuring dyspnea are:

1-To differentiate between patients who have less dyspnea and those who have more dyspnea

2- To determine whether dyspnea has change over time and/or as a result of treatment

DYSPNEA SCALE

• Characteristics – Reliability– Validity– Responsiveness

DYSPNEA SCALES

• Dyspnea in activities of daily living

• Dyspnea during exercise test

DYSPNEA SCALES

• Medical Research Council scale (MRC)

• Oxygen Cost Diagram (OCD)

• Baseline Dyspnea Index (BDI)

• Transition Dyspnea Index (TDI)

DYSPNEA SCALES

• Borg scale

• Visual Analogue Scale (VAS)

MRC

• 1952 , Fletcher, five-point scale • A revised version of the original five-point scale;

‘Medical Research Council’ (MRC) scale – Undimentional scale – MRC scale considers certain activities (such as walking)– MRC scale has been used for diagnostic evaluation and in

clinical trials– A discriminative instrument– It has been shown to predict survival in patients with COPD – Reliability, Validity, Responsiveness

» AJCCM 1999;159:321» Proc Am Thorac Soc 2006;3:234-38» AJCCM 2008;31:416

Dyspnea scales

• The MRC scale is a simple and valid method of categorizing patients with COPD

• There was a significant association between MRC grade and shuttle distance, SGRQ and CRQ scores, but was not associated with FEV1

– Bestall JC, Thorax 1999;54:581

MRC

• It may be difficult with this scale to establish a change in dyspnea; a notable limit to the scale relates to the lack of clear limits between grades

• Unresponsive to interventions such as pharmacotherapy

• The utility of the MRC scale is not recommended

OCD

• The OCD is a 100 mm vertical visual analog scale with 13 activities listed

at various points along the line corresponding to increasing oxygen requirements for their completion, ranging from sleeping to walking uphill

standing

Slow walking on the level

bedmaking

slow walking uphill

sitting

sleping

washing yourself

Brisk walking on the level heavy shopping

Brisk walking uphill

Medium walking light shopping

0

medium walking uphill

BDI

• Mahler , 1984– Functional impairment (performance of daily

activities and occupation)– Magnitude of task (severity or difficulty of physical

activities) – Magnitude of effort (degree of exertion on effort)

Multidimensional scale BDI Total score (0-12)The lower score, the more severe the dyspnea

• Mahler DA, Chest 1984;85:751-58

TDI

• TDI is an evaluative instrument used to quantify the changes in dyspnea from initial or baseline state

• Pharmacotherapy and rehabilitation– Change in functional impairment – Change in magnitude of task – Change in magnitude of effort – TDI total score (-9, +9)

• These scales have been shown to be valid, reliable, responsive

BDI and TDI

• Self-administered and computerized versions of BDI and TDI (SAC BDI and TDI)

• BDI; one component changed from , “climbing three flights of stairs“ to “climbing one flights of stairs “

• TDI; Two changes: an insert was provided on the computer screen of the descriptor selected for the corresponding component of the BDI. A bidirectional VAS was also created for each component of the TDI (+2,+4,+6) (-2,-4,-6)

• Sac TDI is more sensitive to changes in dyspnea than MRC

– Mahler DA, J COPD 2004;1:165-72– Jones P, Respir Med 2005;99:s11

BDI and TDI

• Orginal BDI/TDI; – A computer and the software program

are not required– A basic knowledge of respiratory disease and

view a training video or observe an interview between a patient and an experienced interviewer

– It takes 3-4 min for either the original version

BDI and TDI

Multicenter (89 clinical centers, 18 countries)

A retrospective analysis of a cohort of 997 COPD patients

Validity and pattern of response of the BDI and TDI• BDI was correlated with dyspnea diary score and symptom-activity

comp. SGRQ…….concurrent validity• TDI was also correlated with changes DD, SGRQ scores• The association between baseline FEV1 and BDI, and FEV1 and

TDI……construct validity• TDI responders used less suppl. Salbutamol, had fewer

exacerbation, had improved heath status• The patterns of response confirm a 1-unit change in the TDI focal

score as being clicically important– Witek TJ, Mahler DA, Eur Respir J 2003;21:267

BORG SCALE

• Borg, 1982• Borg scale incorporates nonlinear spacing of verbal

descriptors of severity corresponding to specific numbers• Borg scale should be easier for patients to use for

exercise prescription • This scale allows direct comparisons between individuals

or groups

0 : Nothing at all 0,5: Very very slight1 : very slight2 : Slight3 : Moderate4 : Somewhat severe5 : Severe6 :7 : Very severe8 :9 : Very very severe10 : Maximal

VAS

• Visual analog scale • VAS consists of a line, usually 100 mm in length, placed

either horizontally or vertically on a page, anchors to indicate extremes of a sensation

• No breathlessness and intolerable breathlessness • VAS score is accomplished by measuring the distance

from the bottom to the level indicated

Dyspnea scales

24 OAD patients (COPD, asthma, CF), 12 healthy subjects

• Clinical dyspnea scores (MRC, OCD, and BDI) are significantly correlated with FEV1 and FVC

• Clinical methods for rating dyspnea are interrelated

– Mahler DA, AM Rev Respir Dis 1987;135:1229

Dyspnea scales

20 Patients with COPD, 12 controls• MRC, BDI, Borg scale• PFT, CPET, ABG

MRC :2.10±0.55

BDI: 5.65±1.60

BORG : 4.55±1.23

These scales were correlated with each other and

FEV1, FVC, FEV1/FVC, FEF25-75, PEFR

Akkoca Ö ve ark Tüberküloz ve Toraks 2001;49:431

Dyspnea scales

• 30 Patients with COPD• MRC, BDI, OCD, Borg, VAS

– MRC: 1.67±1.21,BDI:6.87 ±3.31,OCD:4.37 ± 2.84– Borg: 1.63 ±2.36, VAS:2.13 ±2.53

– MRC and BDI were correlated with FEV1 – MRC, Borg scale and VAS

– Özalevli S, Toraks Dergisi 2004;5:90

Dyspnea scales

62 COPD patients

PFT, 6 MWT

MRC, OCD, BDI, CRQ

Dyspnea scale and quality of life correlated significant with exercise performance

but showed no significant correlation with lung function parameters

• Exercise capacity, dyspnea and quality of life ratings,

• Airway obstruction,

• Pulmonary hyperinflation» Wegner RE, Eur Respir J 1994;7:725

Dyspnea scales• Dyspnea , clinical indicator ?90 COPD with patients

Spirometry, 6 minute walking tests

ATS scale, Psychological questionnaires, SGRQ, CRQ

• Severe dyspnea was associated with significantly lower FEV1, shorter 6MWT distance, increased breathlessness with exercise, increased anxiety

• Dyspnea correlated more strongly with HRQL than spirometric parameters

» Schlecht NF, Chronic Respiratory Disease 2005;2:183

Dyspnea scales

• Although spirometry is often used to evaluate disease severity, dyspnea better reflect overall disease impact among COPD patients.

• Schlecht NF, Chronic Respiratory Disease 2005;2:183

HEALTH RELATED QUALITY OF LIFE QUESTIONNAIRES

Health related quality of life

• Restriction to daily activity and impaired quality of life are important outcomes of COPD

• The relationship between activity and quality of life• The relationship between symptoms and activity

– Activities not possible due to symptoms– Activities that are possible but at a cost of greater symptoms– Activities carried out more slowly to avoid symptoms

• Activity limitation may be a central determinant of impaired quality of life due to poor health– Voluntary limitation– Involuntary limitation

– Jones PW, J COPD 2007;4:273

Airway obstruction

Breathlessness

Depression and anxiety

Exercise limitation(IMPAIRMENT)

Muscle wasting

Reduced mobility(DISABILITY)

Life style restriction(HANDICAP)

Attitudes and expectations

External factors

Health related quality of life

• “Health status” measurement provides a standardized method of assessing the impact of disease on patients daily lives, activity and well-being.

• “Quality of life”

The gap between that which is desired in life and that which is achieved

• “Health related quality of life ”

Health related quality of life

• Symptoms, health perceptions, and quality of life are often included in the concept domain of HRQL

• The components of quality of life include symptoms, functional status, mood and social factors

• Questionnaires can measure these components individually or with a composite score

Health Related Quality Of Life Questionnaires

• 1-General health status• For the assessment of general health status which

can be change with any physical or emotional diseases

• 2-Disease-specific health status• Specific quality of life questionnaires. Sensitivity is

higher than the general health status questionnaires, because they have special questions for the specific diseases.

General Quality of Life Questionnaires

• 36-Item Short Form Health Survey (SF-36)• Sickness Impact Profile (SIP)• Quality of Well-Being Scale (QWB)• Nottingham Health Profile (NHP )

Disease-Specific Quality of Life Questionnaires

• Saint George Hospital Respiratory Questionnaire (SGRQ )

• Chronic Respiratory Disease Questionnaire (CRQ)• Quality of Life in Respiratory Illness Questionnaire

(QoL-RIO) • Pulmonary Functional Status & Dyspnea

Questionnaire-Modified Version (PFSDQ-M) • Pulmonary Functional Status Scale (PFSS)

GENERAL

Short Form 36 Health Survey SF-36

• 1988, “developmental”, 1990, “standard” form, Ware JEMedical Outcomes Study (MOS)

• 1991, IQOLA (to translate and to validate)• 1996, version 2.0 of the SF-36 (The international version)

• The SF-36 is a generic measure of health status• It is multi-purpose which contains 36 questions• Physical and mental measures • Eight-scale profile of score• 5-10 minutes, 0 (best score) to 100 (worst score)• Self or trained interviewer Ware JE, J Clin Epidemiol 1998;51:903

Short Form 36 Health Survey SF-36

The SF-36 has been translated in more than 40 countries• Reliability usually exceed 0.90• Validity tests involving physical criteria ranged from

0.43 to 0.93 mental criteria ranges from 0.60 to 1.07

• It has been useful in – comparing general and specific populations, – comparing the relative burden of diseases, – differentiating the health benefits produced by wide range of

different treatments and – screening individual patients

– Ware JE, SPINE 2000;25:3130

Sickness Impact Profile SIP

• Gilson, Bergner, 1976 (revised 1981)• Medical Outcomes Trust, information and permission

• Generic measure used to evaluate the impact of disease on both physical and emotional functioning

• 136 items, 2 sub-scores (physical and psychosocial)• 12 categories (sleep and rest, eating, work, home

management, recreation and pastimes, ambulation, mobility, body care and movement, social interaction, alertness behavior, emotional behavior, communication)

• 20-30 minutes• Self, interview

Sickness Impact Profile SIP

• The measure has been used in patients with COPD and asthma

– Validity– Reliability– Responsiveness

• American Thoracic Society. Quality of life resource. www.atsqol.org

Quality of Well-Being Scale QWB

• An interviewer-administered general health

related quality of life questionnaire • Economic evaluation for cost-effectiveness studies

• 4 categories; Symptom/complex, mobility, physical activity, and social activity.

• 12-20 minutes• Scoring : 0(death) to 1.0 (asymptomatic)• Reliability and validity are reported

Nottingham Health Profile

NHP

• 6 dimensions ; 38 items• Physical mobility, pain, social isolation, emotional

reactions , energy, sleep

• Self• 5 to 10 minutes

• Dimension scores range from 0 to 100, higher the score the greater the health problem

• Reliability, validity and responsiveness are reported

DISEASE-SPECIFIC

Saint George Respiratory Questionnaire (SGRQ)

• 1992 , PW Jones• The patients with fixed and reversible airway obstruction• Three domains:

– Symptoms (frequency, severity); – Activity (activities that cause or are limited by breathlessness); – Impacts (social functioning, psychological disturbances resulting

from airways disease)• Symptoms (5 point likert), Activity and Impacts (yes/no)• 76 item, 10 min.• Self, face-to-face, telephone interview• Scoring range from 0 to 100 (worst score)• A change of 4 units is deemed clinically significant

(MCID)

SGRQ

• In COPD, SGRQ has been used in rehabilitation and pharmaceutical studies

• COPD progression (FEV1)• Survival• Exacerbation frequency

SGRQ

• 144 male COPD patients, 5-year follow-up (31 had died)Exercise capacity (peak VO2) and health status (SGRQ total score) were significantly correlated with mortality

Oga T et al, Am J Respir Crit Care Med 2003;167:544

• 421 COPD patients, multicentre, 6 month follow-upClinically significant deterioration in SGRQ impact scores was shown in 71% of patients following early identification of an AECOPD

Bourbeau J, Eur Respir J 2007;30:907

• 244 COPD patients, pilot studyGOLD stages 0, a significant impairment HRQOL (SGRQ)Early detection

Maleki-Yazdi RM, J COPD, 2007;4:313

SGRQ

• New staging systemThe SAFE index (SGRQ score, air-flow limitation, exercise tolerance)The severity of COPD, exacerbation of COPD

Azarisman MS, Postgrad Med J, 2007;83:492

• Characterization of phenotypes based on severity of emphysema Patients with severe emphysema had significantly poorer QOL ( using SGRQ) and lower BMI

Makita H, Thorax 2007;62:932

SGRQ

• 56 COPD patients (11 female, 45 male)PFT, Dyspnea scales (MRC and BDI), SGRQThere were significant correlation between– BDI and PFT– SGRQ (activity and impact) and same SFT parameters (FEV1 and

RV/TLC)– SGRQ (symptoms and activity) and BDI

Demir G, Akkoca Ö … Tüberküloz ve Toraks 2003;51:365

• 29 COPD patients (11 stage l, 10 stage ll, 8 stage lll)PFT, SGRQ, VASThere were correlations between – SGRQ (impact score) and, stage of disease and VAS– SGRQ (activity and impact scores) and, FEV1 and FVC

Atasever A. Toraks Dergisi 2005;6:25

SGRQ

• The most severe COPD with CRF & PR• Multi-centre study, 1047 patients (327 with CRF)• PFT, ABG, 6MWT

– The patients with CRF ,The Maugeri Respiratory Failure Questionnaire (MRF 28)

– The patients without CRF, SGRQ

• SGRQ did not show any difference between the two groups apart from impact score

• MRF28 showed more impaired scores in the CRF group• MRF28 discriminated very well

– Carone M (The Maugeri Study), Respir Med 2007;101:2447

Maugeri Respiratory Failure Questionnaire (MRF 28)

• 1999, The patients with RF• Three domains; daily activity, cognitive function, invalidity• Self• 28 items

• This questionnaire was developed primarily for use in patients with respiratory failure secondary to pulmonary or chest wall diseases.

• Carone M Eur Respir J 1999;13:1293

Chronic Respiratory Disease Questionnaire (CRQ)

• Guyatt , 1987• The CRQ is an interviewer-administered questionnaire

measuring both physical and emotional aspects of chronic respiratory disease

• 4 categories ;dyspnea, fatigue, emotional function, mastery

• 20 items,15-25 minutes• Numerical, 7-point modified Likert Scale• Total score; higher scores indicate better HRQOL• A change in the score of 0.5 on the 7 point scale, reflects

a clinical significant small change (MCID)(1.0 & a moderate ;1.5 & a large change)

CRQ

• Interviewer-administered CRQ & Self-administered CRQ

• Multi-centre, 177 patients with CRD, PR– CRQ-IA (n:86), CRQ-SA (n:91)– SGRQ, SF-36, other HRQL instruments

• Responsiveness:– The CRQ-SA demonstrated larger score changes than the CRQ-

IA for each of the domains and most of the differences were statistically significant

• Validity:– Moderate-to-high correlations of the CRQ with other HRQL

instruments– Schünemann HJ, Eur Respir Dis 2005;25:31

SGRQ and CRQ

• The relationship between dyspnea ratings and HRQL instruments– MRC, BDI, OCD, Borg scale– SGRQ and CRQ

The MRC, BDI, OCD, SGRQ (activity) and CRQ (dyspnea) demonstrated the correlation with physiologic data (FEV1 and VO2)

– Hajiro T, Am J Respir Crit Care Med 1998;158:1185

• SGRQ, CRQ, AQ20– Moderate and strong correlations between three instruments– The significant correlation between SGRQ and FEV1, DLCO,

VO2, RV/TLC, OCD– The significant correlation between CRQ and DLCO, VO2, OCD

– Hajiro T, Am J Respir Crit Care Med 1999;159:1874

SGRQ and CRQ

• Meta-analyses, 15 studies

(PR program, bronchodilators)

– CRQ change scores ranged from -0.19 to 1.87– SGRQ change scores from -16.00 to 3.00

– The correlation between CRQ and SGRQ change scores was 0.88

– Standardized response means of the CRQ were significantly higher than for the SGRQ

Puhan MA, Health and Quality Of Life Outcomes 2006;4:94

Quality of Life in Respiratory Illness

Questionnaire (QoL-RIO) • 1997• The patients with reversible and fixed airway obstruction

• Seven categories breathing problems, physical problems , emotions, situations triggering or enhancing breathing problems, daily and domestic activities , social activities, relationships and sexuality, general activities

• 55 items, 7-point Likert-type• Self

• Validity is reported but responsiveness and reproducibility is not reported

Pulmonary Functional Status & Dyspnea Questionnaire

Pulmonary Functional Status Scale (PFSDQ-M) (PFSS)

• PFSDQ-M, PFSS are functional status instrument for use in adult pulmonary patients

• 1998, the patients with COPD

• PFSDQ-M – 3 category (functional status, dyspnea and fatigue)– 40 items, – Modified Likert (0-10)– Higher scores indicate worse functional status or symptoms – 6-7 minutes– Self– Validity, reliability and responsiveness are reported– PFSDQ-M discriminated between groups losing rapid (FEV1 % pred >

50 ml/yr) versus less rapid (FEV1 % pred ≤ 50 ml/yr) of lung function

Pulmonary Functional Status & Dyspnea Questionnaire

Pulmonary Functional Status Scale (PFSDQ-M) (PFSS)

• PFSS – 3 domains (daily activities/social functioning,

psychological functioning, sexual functioning)– 53 items– 15-20 minutes– Self– Likert-type scale – Validity and reliability are reported ,

but responsiveness are not reported

SGRQ

• 56 KOAH’lı hasta (11 kadın, 45 erkek)SFT, Dispne skalaları (MRC ve BDİ), SGRQ– BDİ ile SFT arasında – SGRQ (aktivite, etki) ile bazı SFT parametreleri arasında (FEV1

ve RV/TLC)– SGRQ (semptom ve aktivite) ile BDİ arasında anlamlı

korelasyon izlendiDemir G, Akkoca Ö… Tüberküloz ve Toraks 2003;51:365

• 29 KOAH hastası (11 evre l, 10 evre ll, 8 evre lll)SFT, SGRQ, VAS– SGRQ (etki skoru); hastalığın evresi ve VAS– SGRQ (aktivite ve etki skoru); FEV1 ve FVCarasında korelasyon bulunmuş

Atasever A, Toraks Dergisi 2005;6:25