Health related quality of life (HRQoL) is a multi-dimensional concept that includes physical, mental, emotional, and social functioning. It goes beyond direct measures of health such as life expectancy, and causes of death; and focuses on the impact health status has on quality of life. It is important to understand how this relates to “well-being”, which assesses the positive aspects of a person’s life, such as positive emotions and life satisfaction.
Your doctors and care-team have used HRQoL and well-being to measure the effects of chronic illness, treatments, and short- and long-term disabilities. You may have expressed your personal treatment goals to a member of your care-team. More specifically, what is important to you, or being asked how you feel. These conversations are important and often help determine treatment modalities.
According to the Centers for Disease Control (CDC) well-being is a positive outcome that is meaningful because it tells us that people believe that their lives are going well. Good living conditions (e.g., health, housing, employment) are fundamental to well-being. Even when diagnosed with a rare bone marrow failure disease, you can still work to establish a favorable health related quality of life and well-being.
Remember these three points:
- Think about what is important to you.
- Make the necessary changes to ensure you are compliant with your treatment. If something doesn’t feel right, say something.
- Talk to your care-team -- you will be surprised how receptive they are to listening to your beliefs and concerns.