Communicating About the Experience of Pain and Fatigue in Disability

Kathryn M. Yorkston, PhD
Kurt Johnson, PhD
Erin Boesflug, BS
Joe Skala, BS
Dagmar Amtmann, PhD

Background:

Pain and fatigue are two of the most common patient symptoms. People with many different long-term diseases and health problems are affected by pain and fatigue in many different ways. They are complicated problems that are often connected to other symptoms, and can be difficult to measure. One of the most popular ways to measure pain is by asking patients to rate it with a number scale.

Goal:

Our goal was to study the experiences of people with long-term disabilities as they communicate with doctors about pain and fatigue.

The Study:

Twenty-three adults with a number of different long-term health problems participated in five discussion groups. The following questions were discussed:

1. Tell me about your pain/fatigue.
2. What things go along with pain/fatigue?
3. How do you talk about pain/fatigue with your doctors?
4. What should your doctors know that they don’t ask you about?

Results and Conclusions:

People who experience pain and fatigue describe it in many ways, and find it difficult to rate with a number. The participants in the study talked about how important it is that their doctors “listen and believe me when I describe my experience.” They wanted to be asked about how pain and fatigue affect everyday life, and about ways to deal with these symptoms. They did not want to be asked to choose a number to rate the strength of their pain.

Pain and fatigue are complex experiences that cannot be summed up with a number. Since patients know their symptoms best, they should be treated as experts during conversations with doctors. Looking ahead, researchers will use these results to improve patient surveys of pain and fatigue.