Patient surveys: When longer may be better
Disease-specific tools emerge in dialysis care
Doctors and nurses closely monitored a dialysis patient as he suffered through problems with clots and vascular access to hemodialysis and an unsuccessful kidney transplant. They tracked his weight gain, blood pressure, blood chemistry, and diet. Still, they didn’t know as much as they thought.
After analyzing SF-36 health status forms, the clinicians became aware of the patient’s intense pain and the impact his health problems had on his daily life.1
Buoyed by the power of health status surveys to help manage the treatment of the chronically ill, researchers are developing new tools that ask patients even more detailed questions. Dialysis patients, for example, may complete the CHOICE Health Experience Questionnaire (CHEQ), developed at Johns Hopkins University in Baltimore, (see questionnaire, inserted in this issue) or the Kidney Disease Quality of Life questionnaire (KDQOL), developed by researchers at RAND Corp. in Santa Monica, CA.
(Editor’s note: CHOICE stands for Choices for Healthy Outcomes In Caring for End-stage renal disease and is a Patient Outcomes Research Team study funded by the Agency for Health Care Policy and Research in Rockville, MD.)
If 36 core questions reveal patient suffering, will 100 give a better picture? Are the extra, disease-specific questions worth the effort? Will patients answer them?
Those questions remain unanswered as health status surveys evolve into clinical use, says Michelle Chapman, PharmD, program coordinator of the outcomes monitoring program of the Nashville, TN-based Dialysis Clinics Inc. (DCI) chain, which uses that standard health status survey to monitor 9,000 patients every quarter.
"The SF-36 takes less than 10 minutes for people to complete," notes Chapman, who is also a clinical pharmacy specialist in the division of nephrology at the New England Medical Center in Boston. "Patients tend to be less willing to fill out longer questionnaires. It is not yet clear whether the additional information is worth the additional patient burden."
DCI patients have been filling out the health status surveys for three years. Yet she adds, "We’re still learning how to use the information we get from the SF-36."
Think of a disease-specific quality of life questionnaire as an instrument that can detect more sensitive readings. Instead of simply knowing that your patient has low vitality, you learn that she is having trouble concentrating and is waking up in the night.
Peter DeOreo, MD, a nephrologist and medical center director for the Centers for Dialysis Care in Cleveland, has used the SF-36 with his patients for two years. He is now beginning to use the KDQOL to determine the specific burden of illness they face. (The KDQOL and CHEQ incorporate the SF-36 as well as asking disease-specific questions.)
"I truly think they’re complementary," DeOreo says of the surveys. "You have different needs at different times in the patient’s history."
DeOreo plans to administer the SF-36 twice a year and the KDQOL once a year. He notes that he also can select certain KDQOL questions to focus the survey, as long as he includes all the questions within a certain measurement scale of patient functioning.
DeOreo acknowledges that the KDQOL provoked "mixed responses" from patients in a pilot and some resistance from staff. The survey took patients about a half-hour to complete, and most asked for help from dialysis staff. Because the survey includes questions about sexual functioning, the staff felt uncomfortable.
Nonetheless, DeOreo says the KDQOL is worth the extra trouble and even occasional embarrassment. "If your intent is the best care of the patient, you try to be as detailed as you can [in your questions]," he says.
For example, the KDQOL encompasses such issues as the quality of social interaction, social support, and dialysis staff encouragement.2 "The optimal strategy in health-related quality-of-life assessment and evaluation is to combine a generic measure, such as the SF-36, with kidney-disease targeted questions," says Ronald D. Hays, PhD, senior scientist at RAND Health Program in Santa Monica, CA, and leader of the team that developed and is conducting research on the KDQOL.
The KDQOL is now available in a short form, which contains the SF-36, 43 kidney-disease-specific questions, and an overall health rating item. (For contact information on the KDQOL and other health status forms, see box at left.)
The CHEQ evolved from intensive focus groups with dialysis patients, nephrologists, nurses, social workers, and dietitians about what issues mattered most. The questionnaire includes items related to time, freedom, dietary and activity restrictions, body image, sex, sleep, cognitive functioning, and even financial worries.3
Currently, a CHOICE study is comparing the quality of life of patients on hemodialysis and peritoneal dialysis. Although the questionnaire has 117 questions compared to the 36 on the SF-36, CHOICE project director Nancy Fink, MPH, says the CHEQ has an 85% completion rate.
In fact, some patients express gratitude that someone wants to know how they feel about various personal issues, says Fink, a research associate and faculty member of the department of epidemiology at Johns Hopkins University in Baltimore.
Questionnaire helped patient voice concerns
One patient wrote that the questionnaire crystallized some issues for him. "This questionnaire was extremely helpful in making me aware of issues held extremely close to the vest. Things that were kept questions without answers can now be dealt with in a more positive way. I wish to thank those involved for being so considerate of both physical and emotional balances."
Further studies will help researchers focus the CHEQ and shorten it to make it more adaptable for clinical use, Fink says.
DCI clinics are involved in the CHOICE study. But the SF-36 alone is the clinics’ widespread tool for monitoring health status. Even without the disease-specific questions, clinicians gain a wealth of knowledge from the SK-36’s eight functional health scales.
"The results help us to understand the burden of renal disease," says Chapman. "We are able to identify problems that we didn’t otherwise know about or to understand that problems are more severe than patients might initially reveal.
"It has improved communication with patients," she says. "In our experience, we believe that it has changed the care our patients receive."
References
1. Meyer KB, Espindle DM, DeGiacomo JM, et al. Monitoring dialysis patients’ health status. Am J Kidney Dis 1994; 24:267-279.
2. Hays RD, Kallich JD, Mapes DL, et al. Development of the Kidney Disease Quality of Life (KDQOLTM) Instrument. Quality of Life Research 1994; 3:329-338.
3. Powe NR, Klag MJ, Sadler JH, et al. Choices for Health Outcomes In Caring for End Stage Renal Disease. Seminars in Dialysis 1996; 9:9-11.
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