FAQ

Question: Do we need permission to use the KDQOL instrument? Is there a charge for its use?

Response: All of the surveys and tools are public documents, available without charge (for non-commercial purposes).

Please provide an appropriate citation when using these products. In some cases, the materials themselves include specific instructions for citation.

(Link to RAND Surveys and Tools web page http://www.rand.org/health/surveys_tools.html).

Question: How should one score the KDQOL™ when a subject checks off two answers for a single question?

Response: It might make sense to average the responses or to randomly pick one over the other. It definitely doesn't make sense to systematically pick either one favorable or less favorable. If the responses are not adjacent to one another in a large way (say 1 and 5, for example) then you might consider whether these are better coded as missing data (indicative of such poor quality response that neither is believable).

Because of the way the scoring is done for the SF portion of the instrument, it would be better to randomly pick one or the other of two responses, although you could use the average if the average comes out to a whole number. Again, you may wish to consider coding them as missing if the responses are not adjacent to each other in a large way.

Question: Can the KDQOL™ be used in patients who have chronic kidney disease (CKD), but have not yet started dialysis?

Response: Multiple users have used the KDQOL-1.3™ for pre-dialysis patients by excluding the questions about problems with access site (item 14L for hemodialysis) and catheter site (item 14M for peritioneal). In addition, the questions about dialysis staff encouragement and support (items 24A and 24B) are not applicable and should be omitted. Some have decided to administer the question about satisfaction with care (item 23) by changing "kidney dialysis" to "kidney disease."

If using the KDQOL-36, you would also delete the questions about problems with access site (item 28^a for hemodialysis) and catheter site (item 28^b for peritoneal).

Question: For patients with CKD not on dialysis, if we exclude the questions about problems with access site (item 14L for hemodialysis) and catheter site (item 14M for peritioneal), do we need to adjust the scoring algorithm or should we just consider this item to be missing for these patients?

Response: You should consider this item missing and be cautious about comparing symptom/problems scale scores from your sample to results for persons on dialysis.

Response: The KDQOL-36™ is a subset of the KDQOL1.3™, so the 1.3 manual still applies. A crosswalk of the item numbers are as follows:

KDQOL1.3™	KDQOL-36™
1	1 (items 1-12 correspond to SF-12)
3b	2
3d	3
4b	4
4c	5
5b	6
5c	7
8	8
9d	9
9e	10
9f	11
10	12
12a-12d	13-16 (burden of kidney disease)
14a-14l/m	17-28a/b (symptoms of kidney disease)
15a-15h	29-36 (effects of kidney disease)

Response: KDQOL™ Version 1.3 "differs from KDQOL-SF™ 1.2 by adding a screening item about sexual activity" (Hays et al., 1997, P-7994, p. 2).

Question: When administering the KDQOL, social workers understand not to ask leading questions, but find the test time consuming due the number of patients who cannot self-administer (vision or dependency) and the need to read the choices repetitively. Patients also appear to agonize over how to answer questions especially since questions ask for status over a month timeframe.

Is it OK for the person administering the test to advise patients to complete each question with the first answer that comes to mind?

Question: What is your recommendation about frequency of administering the KDQOL?

Response: This depends on the reason for the administration and the status of the patient. If it is for routine monitoring of a patient who is relatively stable, then 2-4 times a year (quarterly or every 6 months) is probably reasonable. If the patient is new to dialysis or has had changes in medication or dialysis prescription, then more frequent assessment might be warranted.

Question: Do you know whether there has been experience administering the KDQOL™ of the SF-36™ by telephone. I am researching the possibility of administering the SF-36™ to ESRD patients by phone.

Response: The SF-36™ has been administered by telephone in several studies including a study of the general US population (McHorney, Kosinski, & Ware, 1994, Medical Care, 32: 551-567). This study revealed that telephone data collection yielded lower rates of missing data, but more positive health-related quality of life scores (suggesting some social desirable response bias by telephone) Data collection costs for the telephone were 77% higher than for the mail survey.

Question: How do you answer the statement from those that developed the SF-36 that the RAND-36 led to higher scores than the SF-36?

Response: We point out the differences in scoring and the rationale for the RAND-36 scoring (see answer to next question).

Response: The SF-36™ and RAND-36™ include the same set of items that were developed in the Medical Outcomes Study. Scoring of the general health and pain scales is different, however. The NEMC scoring is used to provide a direct comparison with general population data that NEMC collected. However, the NEMC scoring system for one of the general health items and the pain scale is inconsistent with the simple summated scoring used for the other SF-36 items.

Specifically, the Excellent to Poor general health item is scored differently by NEMC. On the 0-100 scoring system, NEMC assigns Very Good the value of 85 instead of 75, and Good the value of 60 instead of 50. One of the pain items is scored conditional on the value of another by NEMC, and this increases the correlation between the two items. If one estimates internal consistency reliability for the pain scale using the NEMC scoring method, the coefficient will be artificially inflated. The differences in scoring are summarized by Hays, Sherbourne, and Mazel (Health Economics, 2: 217-227, 1993).

Question: When should the physical and mental health summary scales from the SF-36™ recommended by NEMC be used?

Response: We recommend that the SF-36™ physical and mental summary scores be used if a comparison to the NEMC reference values is desired. However, the scoring recommended by NEMC is based on a model that is inconsistent with observed data--it forces the correlation between physical and mental health scores to be zero, but the true correlation is positive and statistically significant (Hays, Marshall, et al., Journal of Consulting and Clinical Psychology, 62: 441-449, 1994). Therefore, we recommend that users also derive physical and mental health summary scores using an oblique (correlated) factor model.

Response: There are national norms for the SF-36 and RAND-36 (see announcements; Hays, Prince-Embury, & Chen, 1998). Norms for the kidney disease-targeted scales gathered in Amgen's Dialysis and Outcomes Practice Patterns Study (DOPPS) are posted on our Downloads page.

Question: Are there other options for scoring and analysis in addition to HDO,Inc.? People who have gotten their information are concerned about cost.

Response: We believe that the HDO, Inc. charges are reasonable. However, users can score and analyze the KDQOL themselves following the user manual instructions. We have also provided on this site an Excel program for scoring the KDQOL. Alternatively, they might establish a relationship with a local college or university where there might be interest among students or faculty in using the data for research or educational purposes.

Question: Is there any reason why you wouldn't keep KDQOL^TM scores in the medical record? It seems that having the results here would make the scores more useful to all members of the team.

Response: We believe that having the scores in the medical record is an exciting possibility for maximizing the usefulness of health-related quality of life data in clinical practice.