Tools used to assess quality of life

Heart failure can affect people in different ways. Only you (and perhaps your family) really know the true situation, but your healthcare team will be interested to know more about this. They will ask you general questions such as “how are you feeling?”, or “how are things?” and your answers can be very helpful, but if they want to get more details, they may ask you to complete a questionnaire.

Your answers to the questions will help your doctor or nurse to understand better how your heart failure affects you and your lifestyle. It will also help them monitor how things are going.

It is important that you answer the questions honestly. It is your opinion that is important. You must not give the answers you think the healthcare team would like to hear, or what your family of friends think about your health.

Several questionnaires can be used to find out about your quality of life. Some are very general, but your healthcare team will probably be more interested in your heart failure and how it affects you in your day-to-day life. They are most likely to use a questionnaire called “The Kansas City Questionnaire”. It is called this because it was developed by researchers working in Kansas City – but it is now used right across the world, and in many languages. It has 23 questions that ask you about your symptoms of shortness of breath, fatigue (weariness) or ankle swelling, and how they have affected you and your lifestyle over the past 2 weeks. There are also questions on how your symptoms have limited your enjoyment of life, and if you have felt discouraged or “down in the dumps”.

There are other questionnaires that you can be invited to complete, for examples questionnaires about self-care, feelings of depression or daily activities.

If you are in a clinical trial, you will usually be asked to complete the quality-of-life questionnaire at each visit, or you may be sent the questionnaire by post or by email, or by a link to a website. The results may be used to assess the effect of the intervention being tested in the trial on various aspects of patients’ quality of life. If you are not in a clinical trial your health team may also use the questionnaire from time to time. Your answers will help them look after you better. If you have questions for them after filling in the questionnaire, do ask!