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Answers From Our Expert: Quality of Life

Q: How are functioning and well-being surveys used? How often are they administered?

A: Most clinics ask patients to complete the functioning and well-being (FWB) surveys annually or semi-annually and some administer them more often. The advantage of these surveys is that they rely on patients' own responses rather than asking staff to assess patients. These surveys assess how patients are doing on the domains measured by the survey. Some people are concerned that surveys can be administered too often and that patients will resist completing them. I would administer the survey I chose semi-annually for stable patients and consider asking patients to complete the survey more often if they're unstable.

I would consider a patient unstable if he/she has a new diagnosis, an unplanned change in treatment modality, hospitalization, access problem, health setback, change in psychosocial situation, etc. As you probably know, Medicare regulations require patient care planning at these intervals. The new K/DOQI guideline recommends that surveys be administered when the patient is first diagnosed with kidney disease if possible and when at-risk situations occur. To encourage patients to complete the surveys, I would explain that, although some of the questions may seem odd, by completing the survey, they will provide the team with information about things we may not have otherwise known. Their scores can help us target services to improve their functioning and well-being. Then I would use patients' scores to help our team develop and plan interventions.

The KDQOL is similar to the SF-36 in its administration. There is a scoring and analysis program that can be downloaded free along with KDQOL forms from the KDQOL website. To get to the download page, you need to register (it's free to register). The analysis program is in Excel and it looks user-friendly. You might want to also read their FAQ page to see questions people have asked about the survey, administration, etc. and see if your questions are asked/answered. If not, email them. I've done this and received a response and later found my question written for posterity on the FAQ page.

There are hundreds of FWB surveys to choose from. However, a group of experts got together in the late 1990's at a conference to review instruments and determine what to recommend. They recommended 4 tests that met the standards they had established for reliability, validity, ease of administration and test-taking, etc. The instruments they recommended (in alphabetical order) are:

  1. Dartmouth COOP Studies
  2. DUKE Health Profiles
  3. KDQOL
  4. SF-36

You can find links to the websites that describe these surveys as well as a database of other FWB surveys on the Life Options website.

As a social worker I used to survey patients using tools that I developed. Later I learned a huge problem with this is that I hadn't determined if the questions met standards for reliability and validity and since no one else was using the same surveys, I couldn't compare my results with anyone else's. Using a standardized survey like any of the 4 above eliminates this barrier. Whatever you do, I'd strongly suggest that you ask patients to self-report. Research has shown that professionals' ratings are very different from patients' ratings and how highly a patient rates his/her functioning and well-being is linked to hospitalizations and even mortality. As a social worker, if you survey your patients, you can help the team look at issues they may not have assessed that could help not only reduce hospitalizations and lengthen someone's life, but improve their quality of life.

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