Assessing Quality of Life & Psychological Status

Quality of Life

A consistent finding in PR research has been an improvement in patients’ health-related quality of life. Enhancing quality of life is a central aim of PR programs and is highly valued by patients.

A measure of health-related quality of life should be included in the evaluation of a PR program.

Health-related quality of life can be measured with disease-specific or generic measures. Due to their widespread and thorough validation, the following questionnaires are recommended:

  1. Chronic Respiratory Disease Questionnaire (CRDQ or CRQ) – disease specific.
  2. St George’s Respiratory Questionnaire (SGRQ) – disease specific.
  3. Medical Outcomes Study Short Form 36 (MOS SF 36) – generic.

The disease-specific questionnaires are more likely to be responsive to changes after PR and more sensitive to specific respiratory issues than the generic questionnaires. The generic questionnaires provide a more global view of the respiratory patient’s quality of life, include a wider range of scales and can be readily compared with other illness groups.

According to Lung Foundation Australia’s 2015 national survey of PR programs- the SGRQ was the most commonly used QoL questionnaires used in Australian pulmonary rehabilitation programs.

The COPD Assessment Test (CAT) is a short questionnaire to measure health status. While the CAT is not a quality of life questionnaire, the CAT score correlates strongly with the SGRQ total score.

It should also be noted that use of MOS SF 36 and CRDQ require license use payments.

The important features of each of these questionnaires are summarised in the table below:

Pulmonary Hypertension

In PAH the most commonly used disease specific QoL questionnaires are the Camphor ( Cambridge Pulmonary Hypertension Outcome Review) and the emPHasis 10. 

Interstitial Lung Disease

The SGRQ and CRQ are widely used in patients with ILD and are also responsive to change following PR in this patient group. Two ILD-specific HRQoL instruments, the IPF-specific version of SGRQ and the King’s Brief Interstitial Lung Disease questionnaires, have recently been developed. They have not been widely used in PR to date although recent evidence suggests they are responsive to change following PR and are therefore worthy of consideration.

Lung Cancer

For people with lung cancer: European Organization for Research and Treatment of Cancer quality of life questionnaire (EORTC QLQ-C30) and lung cancer module (QLQ-LC13).

St. George’s Respiratory Questionnaire (SGRQ) Chronic Respiratory Disease Questionnaire (CRDQ or CRQ) Medical Outcomes Study Short Form 36 (MOS SF-36) The COPD Assessment Test (CAT)
Practical considerations
  • 50 items
  • 10-15 minutes
  • Self-administered
Interviewer administered - 20 questions divided into four domains
  • 15-30 minutes

Self administered - 20 questions divided into four domains
  • 8-10 minutes
  • 36 items
  • 5-10 minutes
  • Self- or interviewer- administered
  • Validated
  • Short
  • Simple
  • Patient self-completed
Domains assessed
  • Symptoms (frequency and severity)
  • Activity
  • Impact (social functioning, psychological disturbances)
  • Dyspnoea
  • Fatigue
  • Emotional function
  • Mastery of disease
Standardized dyspnoea domain available:
1. Feeling emotional, such as angry or upset
2. Taking care of basic needs (bathing, showering, eating or dressing)
3. Walking
4. Performing chores (housework, shopping)
5. Participating in social activities
  • Same scoring method for individual/standardized dyspnoea items
  • 8 minutes to complete
  • Physical functioning
  • Role limitations due to physical health problems
  • Bodily pain
  • Social functioning
  • General mental health
  • Role limitations due to emotional problems
  • Vitality, energy or fatigue
  • General health perceptions
  • Ability to calculate a Physical Component and Mental Component score
The questionnaire asks the patient to respond to eight questions by placing a mark (X) in one of 6 boxes that best describes their current situation (see below). The eight questions cover:

Cough
  • ‘I never cough’ (0) to ‘I cough all the time’ (5)
Phlegm/Mucus production
  • ‘I have no phlegm/mucus’ (0) to ‘My chest is completely full of phlegm/mucus’ (5)
Chest Tightness
  • ‘My chest does not feel tight at all’ (0) to ‘My chest feels very tight’ (5)
Dyspnoea (breathlessness)
  • ‘When I walk up a hill or one flight of stairs I am not breathless’ (0) to ‘When I walk up a hill or one flight of stairs I am very breathless’ (5)
Activities
  • ‘I am not limited doing any activities at home’ (0) to ‘I am very limited doing activities at home’ (5)
Confidence
  • ‘I am confident leaving my home despite my lung condition’ (0) to ‘I am not at all confident leaving my home because of my lung condition’ (5)
Sleep
  • ‘I sleep soundly’ (0) to ‘I don’t sleep soundly because of my lung condition’ (5)
Energy
  • ‘I have lots of energy’ (0) to ‘I have no energy at all’ (5)
Key Features/ Remarks
  • Disease-specific
  • Total score can also be calculated from all three components, with 0 indicating no health impairment and 100 representing maximum impairment
  • Sensitive and responsive to change after PR
  • Measures clinically significant change (a reduction of 4 U has been identified as the minimum clinically significant change)
  • Available in many languages
  • Reliability and validity widely tested

  • Disease-specific
  • Total score can also be calculated from all four components
  • Sensitive and responsive to change after PR (self administered more responsive)
  • Measures clinically significant change (a change of 0.5 U has been identified as the minimum clinically significant change)
  • The interviewer administered version is resource intensive
  • Reliability and validity of interviewer and self administered versions widely tested
  • Available in many languages

  • Generic measure
  • Scores on nine health concepts are transformed linearly to scales of 0 to 100, with 0 indicating maximal impairment and 100 indicating the minimal impairment
  • Validity and reliability widely tested
  • Used with many populations
  • Good discriminatory potency in interstitial diseases
  • A clinically significant change in score has not been determined
  • In COPD outpatients, floor and ceiling effects have been noted
  • Can compare with other disease groups

  • Disease Specific
  • The scores from all eight questions are added up to give a Total score (out of 40). The higher the score the higher the impact of COPD on the patient.15
  • Not a diagnostic tool
  • The CAT score is sensitive to change. When reviewing the patient following the PR Program, the patient should be aiming for a CAT score lower than or equal to their initial one. A change in score of 2 units has been identified by experts involved in developing the test as being clinically relevant.16

The reliability and validity of the SGRQ and CRDQ is well established with bronchiectasis patients.

Quality of Life Questionnaires: An Outcome Measure

When determining the effectiveness of a PR program (see Patient reassessment section), both statistical significance and clinical importance should be considered. The magnitude of change in the scores of some quality of life questionnaires is reflective of an important improvement (e.g. CRDQ, SGRQ). However, with some other instruments (e.g. SF 36), the magnitude of the change that reflects an important improvement has not been determined.

Assessing Psychological Status: Anxiety and Depression

The definition of pulmonary rehabilitation states that pulmonary rehabilitation is designed to improve the physical and psychological condition of people with chronic respiratory disease. 17

Anxiety and depression are commonly evaluated as a measure of psychological status in people with chronic lung disease. There is a high prevalence of symptoms of anxiety and/or depression in people with chronic respiratory disease with a higher prevalence found in those with more severe respiratory disease requiring supplemental oxygen) and those with lower functional exercise capacity. Moreover, disease-specific anxieties (i.e. fear of dyspnoea, fear of physical activity) and illness perceptions can impact patients’ quality of life, since such disease-specific anxieties relate to avoidance tendencies and generally more dysfunctional illness behaviour.22 23 24

Pulmonary rehabilitation programs have been shown to reduce anxiety and depression in people with COPD (Trappenberg et al, 2005; Coventry et al, 2009; Harrison et al, 2012; Yohannes et al, 2018) with those with higher anxiety and depression on initial assessment experience improvement in these symptoms after pulmonary rehabilitation (Harrison et al 2012).

Given the relatively high incidence of anxiety and depression in patients with chronic respiratory disease and the reduction achieved with a pulmonary rehabilitation program, evaluation of psychological status (anxiety and depression) is recommended as important, both as an outcome of a pulmonary rehabilitation program and as a screening tool for referral for psychological support.

Measurement Tools

There have been a variety of tools used to measure psychological status. No one tool is used (or accepted) as the gold standard. Some examples of commonly used tools are provided below.

  • Hospital Anxiety and Depression Scale (HADs) (Zigmond and Snaith 1983). The HADS is a fourteen item scale with seven of the items related to anxiety and seven related to depression. A license agreement must be completed before use and a user fee may be required (Hospital Anxiety and Depression Scale (HADS)). Some organisations, like Australian Local Health Districts, may hold a license so check with your health district.
  • Depression Anxiety Stress Scales (DASS) (Lovibond and Lovibond 1995). The DASS is a 42-item self-report instrument designed to measure the negative emotional states using fourteen items in each of the following domains of depression, anxiety and tension/stress.  A short form, DASS 21, has seven items in each domain, and the validity and responsiveness of DASS 21 has recently been evaluated in people with COPD (Yohannes et al, 2018). The DASS is freely available from the Pschology Foundation of Australia.
  • Cancer-related fatigue is often experienced by people with lung cancer. A commonly used, valid and reliable questionnaire to measure this is the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F)

The Toolkit

Getting Started
Getting Started
Patient Assessment
Patient Assessment
Exercise Training
Exercise Training
Patient Education
Patient Education
Patient Re-assessment
Patient Re-Assessment
Additional Resources
Additional Resources

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