Patient Assessment Quality of Life

Transcription

1 Patient Assessment Quality of Life STEP 1 Learning objectives This module will provide you with an understanding of the importance of assessing Quality of Life (QoL) in patients and the role that quality of life assessment plays in a pulmonary rehabilitation program. By the end of this module you will be able to: STEP 2 describe QoL and Health-Related Quality of Life (HRQoL) describe the importance of assessing a patient s QoL identify various HRQoL assessments (e.g. St. George s Respiratory Questionnaire, Chronic Respiratory Disease Questionnaire, COPD Assessment Test) explain how assessing HRQoL is important to patient outcomes and when evaluating a pulmonary rehabilitation program. What is Quality of Life and Health-related Quality of Life? The concept of QoL is complex, and the term is difficult to define, but in essence, QoL is best understood as happiness. QoL is a personal attribute. HRQoL refers to the physical, psychological and social domains of health, unique to an individual. 1 The level of HRQoL in people with chronic illness such as COPD is independently associated with risk of unplanned readmission to hospital, and with higher rates of depression 2, 3. In COPD, HRQoL questionnaires aim to quantify the well-being of an individual. 1 STEP 3 Pulmonary rehabilitation and quality of life A consistent finding is that pulmonary rehabilitation improves HRQoL in patients with COPD. Enhancing HRQoL is a central aim of pulmonary rehabilitation programs and is highly valued by patients. A measure of HRQoL, both at: entry into the program completion of the program plays an integral part in the evaluation of a Pulmonary Rehabilitation Program. 4

2 STEP 4 Health-related quality of life measures Health-related quality of life can be measured with: 1. Disease-specific measures These tools reflect the impact of a specific condition (e.g. COPD) on the individual. In general they are more sensitive to change following an intervention such as Pulmonary Rehabilitation. Effects of an intervention on components that are not included, however, may be missed in these more specific tools Generic measures General tools allow you to compare the overall HRQoL of different chronic health conditions. Generic tools need to include a wide range of components, which means their utility and responsiveness to change may be sacrificed because they need to be extensive. 5 Each form of assessment has its advantages and disadvantages and there are many examples of each. The following questionnaires are recommended for use in pulmonary rehabilitation because they have established validity and reliability and are widely used. It is recommended that at least one HRQoL measure is used. St George s Respiratory Questionnaire (SGRQ) disease specific Chronic Respiratory Disease Questionnaire (CRDQ or CRQ) disease specific COPD Assessment Test (CAT) disease specific Medical Outcomes Study Short Form 36 (MOS SF 36) generic STEP 5 St George s Respiratory Questionnaire (SGRQ) The St George s Respiratory Questionnaire (SGRQ) is widely used in a number of pulmonary rehabilitation studies. The SGRQ: is self-administered consists of 50 questions takes about 15 minutes is available in several languages. The SGRQ has three components: symptoms (frequency and severity) activity (activities that cause or are limited by breathlessness) impact (social functioning, psychological disturbances resulting from airway disease). 5 The patient is asked to complete the questionnaire in two distinct parts: Part 1 covers the patient s recollection of their symptoms over a preceding period that may range in length from 1 month to 1 year. It is not designed to be an accurate epidemiological tool as its purpose is to assess the patient s perception of their recent respiratory

3 problems. Part 2 addresses the patient s current state (i.e. how they are these days). The Activity score measures disturbances to the patient s daily physical activity. The Impact score covers a wide range of disturbances of psycho-social function. The Impact score is the broadest component of the questionnaire, covering the whole range of disturbances that respiratory patients experience in their lives. STEP 6 Scoring the St George s Respiratory Questionnaire Scoring can be done electronically (St George s Wizard) or by hand. Information about how to score the questionnaire is provided when a license in received (see below). The patient receives a score for each of the three components: 1. symptoms 2. activity 3. impact. A total score is then calculated which summarises the impact of the disease on overall health status. Scores are expressed as a percentage of overall impairment where 100 represents worst possible health status and 0 indicates best possible health status 6. A decrease in the score reflects an improvement. The minimum important difference in the SGRQ has been reported to be a change of 4 points for the total score 4. A licensing agreement is required to use the SGRQ. For further information contact: Visit the St George s Health Status Research Team website: or contact: Yvonne Forde at sgrq@sgul.ac.uk STEP 7 Chronic Respiratory Disease Questionnaire (CRDQ or CRQ) The CRDQ was developed to determine the effects of respiratory disease on health status, and to measure any change following intervention. It was originally designed for interviewer administration, and is therefore rather resource intensive, though recent adaptations have been made that allow self-administration. Currently, four versions of this tool are in circulation: interview (individualised or standardised) self-administered (individualised or standardised)

4 The CRDQ has also been validated in other languages and has been used in COPD, asthma and cystic fibrosis populations. The CRDQ was designed to be responsive to intervention, and it has performed well in demonstrating changes following pulmonary rehabilitation as a total HRQoL score and as individual component scores. In fact, in a small prospective study of pulmonary rehabilitation, the CRDQ was one of the three most responsive objective outcome measures (with Baseline & Transition Dyspnoea Indexes and Six Minute Walk Distance). 5 STEP 8 Scoring the Chronic Respiratory Disease Questionnaire (CRDQ or CRQ) There are 20 questions that relate to health status over the past two weeks, measured on a 7-point Likert scale (the format of a typical Likert scale offers standard options ranging from Strongly disagree to Strongly Agree ), which contribute to four component scores: Dyspnoea. Emotional function. Fatigue. Mastery. The scores of the four components can be added up to provide a total score of 20 to 140. An increase in the score represents an improvement in HRQoL. The minimum important difference in the total score is reported to be 10 points or 0.5 points per item. Important differences can be reported for each domain 7. STEP 9 Two forms of the questionnaire may be used to assess the Dyspnoea component of HRQoL. The standardised version involves questions relating to five standard activities, whereas the individualised version asks the patient to identify the five tasks or activities important to their everyday life that make them feel breathless. The individualised version is recommended as it is more likely to be sensitive to change following pulmonary rehabilitation 8. When answering a follow-up interview-based questionnaire, the patient is reminded of their first score for each question, so they can more clearly indicate a direction of change. A licensing agreement and fee is required to use the CRDQ. For further information contact: Mrs. Peggy Austin, Dr. Holger Shünemann or Dr. Gordon Guyatt Dept. of Clinical Epidemiology & Biostatistics McMaster University 1200 Main Street West, HSC 3V43A Hamilton, Ontario CANADA L8N 3Z5 PHONE: ext FAX: austinp@mcmaster.ca, schuneh@mcmaster.ca or guyatt@mcmaster.ca

5 STEP 10 COPD Assessment Test (CAT) The two questionnaires listed previously provide valid and reliable assessments of HRQoL in COPD, but are time-consuming, limiting routine use. The COPD Assessment Test (CAT) was developed to provide an instrument that quantifies the current impact of a patient s COPD on a range of measures (fatigue, sleep, etc). It is: validated short simple patient-completed. The brevity of the instrument allows it to be used in routine practice to aid health status assessment and communication between a patient and their physician. The CAT is not a diagnostic tool to be used in isolation but was designed to complement existing approaches such as FEV 1 (spirometry) measurement, in assessing COPD patients by providing a simple method of quantifying the impact of COPD on the patient s health 9. STEP 11 Scoring the COPD Assessment Test 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. The eight questions cover: 1. Cough - I never cough (0) to I cough all the time (5) 2. Phlegm/Mucus production I have no phlegm/mucus (0) to My chest is completely full of phlegm/mucus (5) 3. Chest tightness - My chest does not feel tight at all (0) to My chest feels very tight (5) 4. 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) 5. Activities - I am not limited doing any activities at home (0) to I am very limited doing activities at home (5) 6. 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) 7. Sleep - I sleep soundly (0) to I don t sleep soundly because of my lung condition (5) 8. Energy - I have lots of energy (0) to I have no energy at all (5) STEP 12 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 9. The CAT score is sensitive to change. When reviewing the patient following the Pulmonary Rehabilitation Program, the patient should be aiming for a CAT score lower than or equal to their

6 initial one. A change in score of two units has been identified by experts involved in developing the test as being clinically relevant 10.

7 STEP 13 Medical Outcome Study Short Form 36 (MOS SF 36) Whilst the other three HRQoL assessments are disease specific, the Medical Outcome Study Short Form 36 (MOS SF 36) is a generic survey of patient health. It is most often used for: evaluating individual patient health researching the cost-effectiveness of treatment monitoring and comparing disease burden 11. STEP 14 Scoring the Medical Outcome Study Short Form 36 (MOS SF 36) The MOS SF 36 consists of 36 questions divided into nine sections. These sections are: energy/fatigue physical functioning bodily pain general health perceptions physical limitations due to health problems limitations due to emotional problems caused by illness social functioning mental health/emotional well-being perceived change in health during the last 12 months. STEP 15 Each of the nine sections is transformed linearly to scales of 0 to 100 with 0 indicating maximal impairment and 100 indicating minimal impairment 11. A physical component and a mental component score can also be calculated. As noted earlier in this module there are advantages and disadvantages to using a generic questionnaire. Whilst a generic questionnaire such as the MOS SF 36 allows comparison with other disease groups, such tools need to include a wide range of components, which means their utility and responsiveness to change may be sacrificed 3. A licensing agreement and fee is required to use this questionnaire. Contact Quality Metric to obtain access to the questionnaires and scoring software via QM Certified Scoring -

8 STEP 16 Quality of life in pulmonary rehabilitation As noted at the beginning of this module, a consistent finding is that pulmonary rehabilitation improves health-related quality of life in patients with COPD. Enhancing quality of life is a central aim of pulmonary rehabilitation programs and is highly valued by patients. It is important to conduct at least one health-related quality of life assessment at a patient s entry point into the program and at their completion. Evaluation of the program will be addressed in a later module. STEP 17 Module summary This module provided you with an understanding of the importance of assessing Quality of Life (QoL) in patients and the role that quality of life assessment plays in a pulmonary rehabilitation program. You should now be able to: describe QoL and Health-Related Quality of Life (HRQoL) describe the importance of assessing a patient s QoL identify various HRQoL assessments (e.g. St. George s Respiratory Questionnaire, Chronic Respiratory Disease Questionnaire, COPD Assessment Test) explain how assessing HRQoL is important to patient outcomes and when evaluating a Pulmonary Rehabilitation Program. References 1 Frith P. A manual for pulmonary rehabilitation in Australia: Evidence base and standards; Version 3; Revised 2008; 26-28; 2 Almagro P, Barreiro B, Ochoa de Echaguen A, Quintana S, Rodríguez Carballeira M, Heredia JL, Garau J. Risk factors for hospital readmission in patients with chronic obstructive pulmonary disease. Respiration. 2006;73(3): Epub 2005 Sep 6 3 Gudmundsson G, Gislason T, Janson C, Lindberg E, Hallin R, Ulrik CS, Brøndum E, Nieminen MM, Aine T, Bakke P. Risk factors for rehospitalisation in COPD: role of health status, anxiety and depression. Eur Respir J Sep;26(3): Pulmonary Rehabilitation Toolkit Assessing Quality of Life Revised Accessed 06 June Frith P. A manual for pulmonary rehabilitation in Australia: Evidence base and standards; Version 3; Revised 2008; ; < >; Accessed 07 June Jones P, Spencer S, Adie S. The St George s Respiratory Questionnaire Manual; Version 2.3; June 2009; St George s Hospital Medical School; London, UK < Accessed 07 June Jaeschke, R., J. Singer, et al. (1989). Measurement of health status. Ascertaining the minimal clinically important difference. Controlled Clinical Trials 10: Williams, J.E.A., S.J. Singh, et al. (2003). Health status measurement: Sensitivity of the self-reported Chronic Respiratory Questionnaire (CRQ-SR) in pulmonary rehabilitation. Thorax 58: Jones PW, Harding G, Berry P, Wiklund I, Chen W, Kline Leidy N. Development and first validation of the

9 COPD Assessment Test; Eur Respir J; 2009; 34; Jones PW, Jenkins C, Bauerle O (on behalf of the CAT Development Steering Group) The COPD Assessment Test healthcare professional user guide: expert guidance on frequently asked questions 11 Hays RD, Sherbourne CD, Mazel RM. User s manual for the medical outcomes study (MOS) core: measures of health-related quality of life; Rand Corporation; MR-162-RC; 1995; < Accessed 08 June 2012