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Dr. Zia Hashim
M.D. (Internal
Medicine), D.M. (Pulmonary & Critical
Care), FCCP
Associate Professor
Department of Pulmonary Medicine
Sanjay Gandhi
Postgraduate Institute of
Medical Sciences
Lucknow
 What is HRQoL
 What does it include
 How to measure
DYSPNEA
FATIGUE
REDUCED
ACTIVITY
LOSS OF
WORK
SOCIAL
ISOLATION
INABILITYTO
PERFORM
HOBBIES
DEPRESSION
ANXIETY
 Focussing on only one
aspect of health live a
lab test (FEV1 or
radiology)
is like
 Missing forest for trees
 Focussing on only one
aspect of health live a
lab test (FEV1 or
radiology)
is like
 Missing forest for trees
 HRQL is a multidimensional construct composed
of several domains
 Physical
 Social
 Mental/emotional
 Cognitive
 Spiritual
 Refers to the extent to which 1 or several of
these domains are affected by DISEASE
 Or ITSTREATMENT
1. Physical/functional component
2. Psychological/emotional
3. Social/occupational
4. Therapy component
 Physical
 Occupational
 Emotional
 Symptoms
 Financial
 Family
 Satisfaction
 Global perception of
overall HRQoL
 Assessment involves both subjective and objective
measures.
 Subjective : PATIENT-REPORTED OUTCOMES
(PRO)
 Objective
 Any report coming directly from patients
 Without interpretation by physicians
 About how they feel in relation to a health
condition and its therapy
1. Lab measures (assessing underlying disease
state)
2. Improvement in the symptoms of patient
3. Reduced or reversed disease progression
4. Reduced mortality
Best
Worse
Visual Analogue Scale
How is your QoL today?
“Objective” measure
Exercise test versus physical functioning, r = 0.40
“Subjective” measure
Wiklund I et al. Clin Cardiol 1991. Slide presented with the authorization of Pr IngelaWiklund
“Objective” versus Subjective
© Pr IngelaWiklund
Health profile questionnaire related to multiple
domains
 Disease specific
 Generic
 Instrument = Questionnaire
 Item = Question
 Domain = Area of experience
 Generic
 Disease specific
 Domain specific
 Short form health survey form 36
 SF-12:
 General questions which can fit any disease
 Limitation of activity
 Energy levels
 Pain
 Can be used to compare between different
diseases
 May not cover adequate disease specific focus
 Fatigue specific: Multidimensional fatigue
inventory MFI
 McGill pain questionnaire
 St George's Respiratory Questionnaire
(SGRQ)
 Chronic Respiratory Disease Questionnaire
 COPD assessment test (CAT)
 Asthma Quality of Life index
 Quantifiable: Summary scores must be
amenable for statistical analysis
 Validity: Should be a true measure of
HRQoL; should measure what is supposed to
measure
 Reproducible: Should produce similar results
in comparable patients
 Responsiveness: Should detect clinically
important changes
 Simplicity: Should be short
 Linear analog self assessment
 True false questions
 Questions with multiple choices
 Specific to disease:
 Dyspnea
 Cough
 Fatigue (sarcoidosis)
 Excessive daytime sleepiness
 Pain (cancer)
 Interaction with other domains
 Step 1: Identify the respondent
 Patient
 His level of education
 Language
 Step 2: Choose the domains
 Step 3: Consider the interpretation:
translating into numerical values
 Step 4: Choose a mode of administration
 In person while waiting for turn in OPD
 By phone
 By Email
 Self administered (by form)
 Most commonly used disease specific
instrument : COPD, asthma, ILD
 Available in almost all languages including
Indian languages
 Correlates well with FEV1
 SGRQ-C is more commonly used with COPD
Jones PW, Quirk FH, et al. A self complete measure of health status for chronic airflow
limitation:The St. George’s RespiratoryQuestionnaire. Am Rev Respir Dis 1992; 145:
1321-7
 Highly correlated with paraclinical measures
such as
 Oxygen tension in arterial blood (Pao2)
 Exercise tolerance
 Symptoms : dyspneaand fatigue
 Psychological burden of the disease
 50 questions
 76 weighted responses
 Components:
 Symptom
 Activity
 Impact
 Items related to anxiety and depression
NOT included
 Cough
 Sputum production
 Wheeze
 Dyspnea
 In an average week how many good days
with little chest trouble have you had
 16 questions that identify physical activities
that either lead to or are limited by
breathlessness
 Getting washed or dressed
 Walking around the home
 Walking outside on the level
 Walking up a flight of stairs
 Walking up hills
26 questions related to different aspects of social
functioning and psychological disturbances
resulting from airway disease
 Employment
 Being in control of health
 Stigmatization
 Need for medications
 Side effects of medications
 Expectations of health
 Disturbance of daily life
 Scores range: 0 to 100 are computed for each
component
 Total score: 0 to 100
 A higher SGRQ score: Poorer HRQoL
 Minimum clinically significant score: 4
 Score > 25:Taken in GOLD 2017
 All component and total scores are computed
using item specific weights assigned to each
question
 Very good tool for clinical trials, studies
 Time consuming
 Number of items are more
 Requires a computer
COPD Assessment Test
(CAT)5,13
5-point scale assessing 8 items
• Severity of cough
• Quantity of sputum
• Dyspnea
• Chest tightness
• Capacity for exercise &
activities
• Confidence
• Sleep quality
• Energy levels
 Key tool for patient assessments in the Global
Initiative for Chronic Obstructive Lung
Disease (GOLD)
 The CAT is a validated questionnaire that
distinguishes patients with varying degrees of
COPD severity and appears to behave
similarly across countries
 CAT scores also improve in response to
pulmonary rehabilitation
 Acceptable
 Valid
 Reliable generic HRQoL measuring tool in
patients with chronic respiratory diseases
Although one study in COPD showed a link
between generic HRQoL scores and disease
severity, most studies have failed to
document such associations
CCQ: COPD Clinical questionnaire
Global Strategy for Diagnosis, Management and Prevention of COPD.
Updated 2017
Risk
(GOLDClassificationofAirflowLimitation)
Risk
(Exacerbationhistory)
> 2
1
0
(C) (D)
(A) (B)
mMRC 0-1
CAT < 10 or CCQ<1
SGRQ < 25
4
3
2
1
mMRC > 2
CAT > 10 or
CCQ>1
SGRQ > 25
Symptoms
A: Les symptoms, low risk
B: More symtoms, low risk
C: Less symptoms, high risk
D: More Symtoms, high risk
SGRQ MRC Dyspnoea
Questionnaire
CCQ CAT
• Measures impaired
health and wellbeing
• Measures
dyspnoea only
• Measures clinical
disease control
• Measures holistic
impact of COPD on
patients
• Used largely in
clinical trials
– • Used in clinical
practice
• Used in clinical
practice
• Long (76-items) • Short (5-items) • Short (10-items) • Short (8 items)
• Patient completed • Patient completed • Patient completed • Patient completed
• Computer required • Paper based • Paper based • Paper based
• Complex to
administer
• Simple to
administer
• Simple to
administer
• Simple to
administer
 Asthma Quality of Life instrument (AQLQ): 32
items
 Mini AQLQ: 15 items
 Symptoms
 Activity limitation
 Emotional
 Function and environmental stimuli
 Patients: actively engage in their health care
because patient input is required to make
such assessments
 Clinicians: focus beyond laboratory tests
 Both: common goal of maximizing the
patient’s sense of health
 Evaluating effectiveness of treatments
 Useful in decision making: preferring
treatments with better HRQoL:
 Quality adjusted survival: 1 year survival with X
HRQoL must be as desirable as 6 months with 2X
HRQoL
 Predicting disease outcome: Better baseline
HRQoL better survival
 HRQoL consists of multiple domains of life:
symptoms, emotional, occupational,
recreation
 Traditional approach of measuring mortality
and morbidity is now being replaced by
improving HRQoL
 HRQoL is usually measured by validated well
designed questionnaires where the responses
are turned into quantifiable scores
 SGRQ is the most common instrument used
in chronic respiratory diseases
 It is well validated and is largely used in
clinical trials and studies
 CAT is a short questionnaire recommended
by GOLD 2017 for practical application
 THANKYOU !

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Health Related Quality of Life (HRQoL) in pulmonary medicine

  • 1. Dr. Zia Hashim M.D. (Internal Medicine), D.M. (Pulmonary & Critical Care), FCCP Associate Professor Department of Pulmonary Medicine Sanjay Gandhi Postgraduate Institute of Medical Sciences Lucknow
  • 2.  What is HRQoL  What does it include  How to measure
  • 3.
  • 5.  Focussing on only one aspect of health live a lab test (FEV1 or radiology) is like  Missing forest for trees
  • 6.  Focussing on only one aspect of health live a lab test (FEV1 or radiology) is like  Missing forest for trees
  • 7.  HRQL is a multidimensional construct composed of several domains  Physical  Social  Mental/emotional  Cognitive  Spiritual  Refers to the extent to which 1 or several of these domains are affected by DISEASE  Or ITSTREATMENT
  • 8. 1. Physical/functional component 2. Psychological/emotional 3. Social/occupational 4. Therapy component
  • 9.  Physical  Occupational  Emotional  Symptoms  Financial  Family  Satisfaction  Global perception of overall HRQoL
  • 10.  Assessment involves both subjective and objective measures.  Subjective : PATIENT-REPORTED OUTCOMES (PRO)  Objective
  • 11.  Any report coming directly from patients  Without interpretation by physicians  About how they feel in relation to a health condition and its therapy
  • 12. 1. Lab measures (assessing underlying disease state) 2. Improvement in the symptoms of patient 3. Reduced or reversed disease progression 4. Reduced mortality
  • 14. “Objective” measure Exercise test versus physical functioning, r = 0.40 “Subjective” measure Wiklund I et al. Clin Cardiol 1991. Slide presented with the authorization of Pr IngelaWiklund “Objective” versus Subjective © Pr IngelaWiklund
  • 15. Health profile questionnaire related to multiple domains  Disease specific  Generic
  • 16.  Instrument = Questionnaire  Item = Question  Domain = Area of experience
  • 17.  Generic  Disease specific  Domain specific
  • 18.  Short form health survey form 36  SF-12:  General questions which can fit any disease  Limitation of activity  Energy levels  Pain  Can be used to compare between different diseases  May not cover adequate disease specific focus
  • 19.  Fatigue specific: Multidimensional fatigue inventory MFI  McGill pain questionnaire
  • 20.  St George's Respiratory Questionnaire (SGRQ)  Chronic Respiratory Disease Questionnaire  COPD assessment test (CAT)  Asthma Quality of Life index
  • 21.  Quantifiable: Summary scores must be amenable for statistical analysis  Validity: Should be a true measure of HRQoL; should measure what is supposed to measure  Reproducible: Should produce similar results in comparable patients  Responsiveness: Should detect clinically important changes  Simplicity: Should be short
  • 22.  Linear analog self assessment  True false questions  Questions with multiple choices
  • 23.  Specific to disease:  Dyspnea  Cough  Fatigue (sarcoidosis)  Excessive daytime sleepiness  Pain (cancer)  Interaction with other domains
  • 24.  Step 1: Identify the respondent  Patient  His level of education  Language  Step 2: Choose the domains
  • 25.  Step 3: Consider the interpretation: translating into numerical values  Step 4: Choose a mode of administration  In person while waiting for turn in OPD  By phone  By Email  Self administered (by form)
  • 26.  Most commonly used disease specific instrument : COPD, asthma, ILD  Available in almost all languages including Indian languages  Correlates well with FEV1  SGRQ-C is more commonly used with COPD Jones PW, Quirk FH, et al. A self complete measure of health status for chronic airflow limitation:The St. George’s RespiratoryQuestionnaire. Am Rev Respir Dis 1992; 145: 1321-7
  • 27.  Highly correlated with paraclinical measures such as  Oxygen tension in arterial blood (Pao2)  Exercise tolerance  Symptoms : dyspneaand fatigue  Psychological burden of the disease
  • 28.
  • 29.  50 questions  76 weighted responses  Components:  Symptom  Activity  Impact  Items related to anxiety and depression NOT included
  • 30.  Cough  Sputum production  Wheeze  Dyspnea  In an average week how many good days with little chest trouble have you had
  • 31.
  • 32.  16 questions that identify physical activities that either lead to or are limited by breathlessness  Getting washed or dressed  Walking around the home  Walking outside on the level  Walking up a flight of stairs  Walking up hills
  • 33.
  • 34. 26 questions related to different aspects of social functioning and psychological disturbances resulting from airway disease  Employment  Being in control of health  Stigmatization  Need for medications  Side effects of medications  Expectations of health  Disturbance of daily life
  • 35.
  • 36.  Scores range: 0 to 100 are computed for each component  Total score: 0 to 100  A higher SGRQ score: Poorer HRQoL  Minimum clinically significant score: 4  Score > 25:Taken in GOLD 2017  All component and total scores are computed using item specific weights assigned to each question
  • 37.
  • 38.  Very good tool for clinical trials, studies  Time consuming  Number of items are more  Requires a computer
  • 39. COPD Assessment Test (CAT)5,13 5-point scale assessing 8 items • Severity of cough • Quantity of sputum • Dyspnea • Chest tightness • Capacity for exercise & activities • Confidence • Sleep quality • Energy levels
  • 40.
  • 41.
  • 42.
  • 43.  Key tool for patient assessments in the Global Initiative for Chronic Obstructive Lung Disease (GOLD)  The CAT is a validated questionnaire that distinguishes patients with varying degrees of COPD severity and appears to behave similarly across countries  CAT scores also improve in response to pulmonary rehabilitation
  • 44.
  • 45.  Acceptable  Valid  Reliable generic HRQoL measuring tool in patients with chronic respiratory diseases Although one study in COPD showed a link between generic HRQoL scores and disease severity, most studies have failed to document such associations
  • 46. CCQ: COPD Clinical questionnaire
  • 47. Global Strategy for Diagnosis, Management and Prevention of COPD. Updated 2017 Risk (GOLDClassificationofAirflowLimitation) Risk (Exacerbationhistory) > 2 1 0 (C) (D) (A) (B) mMRC 0-1 CAT < 10 or CCQ<1 SGRQ < 25 4 3 2 1 mMRC > 2 CAT > 10 or CCQ>1 SGRQ > 25 Symptoms A: Les symptoms, low risk B: More symtoms, low risk C: Less symptoms, high risk D: More Symtoms, high risk
  • 48.
  • 49. SGRQ MRC Dyspnoea Questionnaire CCQ CAT • Measures impaired health and wellbeing • Measures dyspnoea only • Measures clinical disease control • Measures holistic impact of COPD on patients • Used largely in clinical trials – • Used in clinical practice • Used in clinical practice • Long (76-items) • Short (5-items) • Short (10-items) • Short (8 items) • Patient completed • Patient completed • Patient completed • Patient completed • Computer required • Paper based • Paper based • Paper based • Complex to administer • Simple to administer • Simple to administer • Simple to administer
  • 50.  Asthma Quality of Life instrument (AQLQ): 32 items  Mini AQLQ: 15 items  Symptoms  Activity limitation  Emotional  Function and environmental stimuli
  • 51.  Patients: actively engage in their health care because patient input is required to make such assessments  Clinicians: focus beyond laboratory tests  Both: common goal of maximizing the patient’s sense of health
  • 52.  Evaluating effectiveness of treatments  Useful in decision making: preferring treatments with better HRQoL:  Quality adjusted survival: 1 year survival with X HRQoL must be as desirable as 6 months with 2X HRQoL  Predicting disease outcome: Better baseline HRQoL better survival
  • 53.  HRQoL consists of multiple domains of life: symptoms, emotional, occupational, recreation  Traditional approach of measuring mortality and morbidity is now being replaced by improving HRQoL  HRQoL is usually measured by validated well designed questionnaires where the responses are turned into quantifiable scores
  • 54.  SGRQ is the most common instrument used in chronic respiratory diseases  It is well validated and is largely used in clinical trials and studies  CAT is a short questionnaire recommended by GOLD 2017 for practical application