All of our factsheets have been reviewed by members of the European Respiratory Society (ERS) who are experts in the field. These are freely available to download in a range of European languages.
“Health-related quality of life” is a concept used to measure how your health affects how you are feeling physically, mentally and emotionally.
Health-related quality-of-life measurements can be used in addition to traditional clinical measurements, such as blood pressure and lung function, to assess the overall impact your condition is having upon your lifestyle.
Health-related quality-of-life questionnaires help healthcare professionals to understand what you would like help with and which areas of your life are most affected, so they are more able to assess which symptoms are causing you the most problems.
This factsheet uses the example of asthma as a condition where quality-of-life measurements may be used to help determine the best treatment plan. This includes advice on behavioural changes as well as prescribed medication.
The two women below are the same age and have the same disease but it affects their lives differently:
|Female, aged 35||Female, aged 35|
|Moderate asthma||Moderate asthma|
|Mary works part-time from home. She can fit her work and activities around her asthma. She is generally a relaxed person and her asthma does not bother her too much.|| |
Hannah has a fast-paced job in a dusty office. She tends to worry about her health as she is very athletic and enjoys a lot of exercise. As a result, her asthma causes her quality of life to be quite severely impaired.
If Hannah and Mary received the same treatment, they may both show similar improvements in the usual measurements of lung function taken by the healthcare professional. However, the improvement in Hannah’s quality of life is likely to be much greater than that in Mary’s because Hannah would be less unwell at work, could enjoy her hobbies and would be less worried in general.
Health-related quality-of-life measurements are usually taken from a questionnaire. A person’s answers will help the healthcare professional determine which symptoms are stopping the person continuing with their normal lifestyle and which treatment will be most effective in helping to make this possible.
These questionnaires include a range of questions including:
1. How would you rate your current health?
2. Does your chest trouble interfere with your work?
3. What type’s of activities leave you short of breath?
Consider how Hannah and Mary would answer these questions. How would their answers differ?
Using health-related quality-of-life measurements can also help with shared decision making. Having a say in deciding which treatment plan will be best for you can make you feel more involved in the management of your condition. It can also help you to feel happier about following your treatment plan which will then help control your condition.
|“Using health-related quality-of-life measurements turns the usual treatment process, which is led by the doctor, into a successful partnership. This approach changes the dynamic of a consultation and allows the patient to tell the doctor what they would like to help them feel better.”|
|Professor David Price, a lung health expert who uses quality-of-life measures in research and clinical practice|
Health-related quality-of-life measurements can be used in research to assess whether new treatments are effective enough to improve a patient’s life. This form of measurement is sometimes referred to as a patient-reported outcome.
It is important for researchers to assess the effect a new treatment has on a person. Health-related quality-of-life measurements are often included in scientific research as they help researchers to understand whether new treatments will benefit people with certain diseases. Some treatments may not improve symptoms, but could greatly improve quality of life, and vice versa.
The EU-funded PROactive project is an example of a project developing patient-reported outcome measurements. The team are currently developing an patient-reported outcome tool that can record how a treatment affects physical activity in people with COPD.
To develop this tool, the research team is working directly with patients with COPD to understand how they experience physical activity. At the end of the project, the new tool will be used, like the asthma questionnaires mentioned above, to understand more about how a person’s illness is affecting their lifestyle.
The questions will be programmed in an electronic device, that looks like a mobile phone. On this device, patients can indicate on a daily basis the amount of activity (‘what do I do?’), the symptoms (‘how much shortness of breath or tiredness did I experience?’) and the adaptations they need to make (‘did I need to slow down, or take breaks?’). Patient will also wear an activity monitor to give a precise indication of their physical activity. These measurements will be used to test the effectiveness of new treatments for COPD. The progress of the project can be monitored at www.proactivecopd.com
This material was written by the ELF in conjunction with Professor Elizabeth Juniper, Professor David Price and Dr Fabienne Dobbels.
There are a number of health-related quality-of-life questionnaires available which your healthcare provider can use to assess your condition. Below are some examples of these tools:
Asthma questionnaires (adults and children)
St. George’s Respiratory Questionnaire
Cystic Fibrosis Questionnaire
Other quality of life questionnaires