Talking with Patients About Low Scores
Key points to remember about KDQOL Complete scoring are:
- The range of average scores is very broad, so someone who falls in the “below average” tertile is at significantly higher risk of hospitalization and/or death.
- The predictive value of these scores has been proven in multiple studies among tens of thousands of dialysis patients.
- Patients who respond to questions with the low options know that they don't feel good: We are not telling them anything they didn't already know.
- There is hope. There are interventions that have been shown through research to be effective in improving scores.
Knowing the truth may help motivate patients to do something different, and we should not be afraid to share this difficult truth with patients. If we shy away from delivering this news, we need to consider whether we are protecting our patients—or ourselves. Certainly a doctor would tell a patient that he/she has kidney failure (or cancer) or some other frightening but treatable illness. We owe our patients the truth.
Social workers who use KDQOL Complete have found that when the report is presented in a positive way, it can have a positive outcome in behavior change. One way to present the information to patients is to say something like:
“I looked at your survey and notice that you marked several survey questions low. Can we talk about that? What affected how you marked your survey (probe for reasons)?
My concern is that the way you marked your survey lowered your scores in these areas (describe).
Research has shown that low scores are linked to higher risk of hospitalizations and even death. We want to help you avoid those things. There are a number of things you can do that research has shown to improve scores. [Discuss these with the patient and personalize them if you know behaviors the patient has that may be contributing— skipping/shortening treatments, not taking medications as prescribed, being sedentary, avoiding people because of depression, etc.]
What goals would you be willing to set to improve these scores? How can our team help you do that? We'll be planning for your care at a meeting on (date) and we'd like you to attend to help us help you. Would you be willing to be there?”
You can take the survey and the scores to a care planning meeting, explain the scores and the risks, and point out the symptoms or problems the patient reported and other areas where the patient marked negatively. This should help individual team members brainstorm things they can do and how the team as a whole can work together.
Patients need to be more involved in planning than just signing a form, as some of the team goals may not be patient goals and patients may not be willing to do some of the interventions staff may consider. Interventions must be workable and goals achievable to help patients achieve the best possible outcomes.