KDQOL-36: The What, How, and Why for Home Dialysis Patients

The Kidney Disease Quality of Life (KDQOL) survey has long been used to assess dialysis patients’ quality of life (QOL). It can be a relatively useful and informative tool for social workers and other staff to better understand a patient’s perspective of one’s life situation when on dialysis. The survey can be especially important to use with home dialysis patients who, with their families, have quite a responsibility with all that needs to be managed for home dialysis.

Clinical Research on Home Modalities with KDQOL

I had used the KDQOL survey for about 17 years. In 2011, my colleagues and I had several questions about Health Care Quality of Life with home dialysis patients. Previous research suggested varying results for the Physical Component Summary scores (PCS) and Mental Component Summary scores (MCS) for in-center dialysis (ICHD) patients compared to those in the general population, between different peritoneal dialysis (PD) modalities, and between patients on short-daily home hemodialysis (DHHD) and those in the general population. Most of the studies using the KDQOL survey at that time reflected results with ICHD patients.

Our questions were basic:

1. What was the QOL for home dialysis patients (DHHD, PD) and was it different for the two modalities?

2. Did results differ when demographic features (age, gender, race) were considered?

3. Did results differ when illness issues (diabetes status, length of time on dialysis, access type, Kt/V, serum albumin, frequency of hospitalization) were considered?

Using the KDQOL-36, we looked at only the PCS and MCS scores for our various home dialysis patients in our clinic: DHHD; CAPD (Continuous Ambulatory PD); and APD (Automatic PD). We chose these two scores, rather than considering the other three scores (Burden of Kidney Disease, Symptoms and Problems of Kidney Disease, and Effects of Kidney Disease) as the results seem to be more straightforward than those of the three other scores when the questions were interpreted by patients. We looked at one-time responses of all our patients within one calendar year.

We had a rather large number of patients at the time, about 125, evenly distributed between DHHD and PD modalities. Results for 114 participants (52 PD, 62 DHHD) were as follows:

1. There were no significant differences in the PCS or MCS scores by home dialysis modality and results were pooled for the rest of the statistical analyses.

2. Those who had diabetes and were hospitalized at least once had lower PCS scores.

3. Those who were younger and non-White had significantly higher PCS scores.

4. There were no significant differences from the general population data for MCS by gender, age, race, presence of diabetes, time on dialysis, or dialysis adequacy.

We concluded, based on statistical analysis, that for both DHHD and PD, control, independence, flexibility, and autonomy had a positive effect on patient outlook on life, despite the perception of being more debilitated physically (than the general population).

Eventually we would want to repeat the study with in-center hemodialysis (ICHD) patients to see what differences presented when comparing all three modalities. And eventually, we would want to consider other demographic issues: employment, financial status and stresses, etiology of kidney disease, educational level, mental health issues, family dynamics including role of the care partner in patients’ dialysis, previous transplant, previous dialysis experience in another modality, perceived locus of control, etc. The results were presented at the 2013 National Kidney Foundation (NKF) Spring Clinical Meeting and published in the Journal of Nephrology Social Work in 2015¹. Circumstances and lack of research funds did not allow follow-up investigation, however.

Since then, there have been additional reported studies on KDQOL, including one to propose a single score for all of the KDQOL² and another to explore the effect of peer mentoring on QOL for patients with Chronic Kidney Disease (CKD).³ Both approaches warrant analyses with home dialysis patients. And, given the changes in home dialysis options, training, and procedures in the last decade, results on the KDQOL need to be compared within and for ICHD and home dialysis patients for all modalities.

Dilemmas and Reservations About the KDQOL-36

I must confess to some mixed feelings about the selection and wording of many of the items in the full KDQOL survey and what they can and cannot indicate. I had been more critical of question selection and question wording later in my renal social worker career than in my earlier years when I was, in fact, enamored of the tool and what it represented. My concerns focus on items that seem more peripheral to key QOL issues as well as how some of the questions were phrased that made them ambiguous, albeit difficult, for patients to respond to. Hence, my bias tends toward focusing on some, not necessarily all, of the scales. In my experience, I found the MCS and Symptoms questions to be most useful in interacting with other, more medically oriented, staff.

For our fast-paced, large clinic, finding time to educate and inform other staff on the KDQOL and report especially significant patient results was, frankly, a challenge. It was difficult, too, to find opportunities to show how the KDQOL results might be an indicator of issues that needed addressing by nurses, dietitians, and physicians. Our eight nephrologists were scheduled regularly on an expected monthly schedule with half of them coming in at least twice monthly for clinics. They also were scheduled with many patients during the half or full days they were at the clinic. Hence, they had limited time for dialogue about KDQOL and related issues. Psychosocial as well as medical crises, of course, had their attention. In addition, with differing personalities, adjusting how and when to present information to physicians was critical.

Our unit, unfortunately, rarely had “staffing” sessions where all patients for each physician were reviewed with the “team.” I interpreted QOL results for patients and families and solicited feedback from and discussion with them. I highlighted significant and/or unexpected results of all scales to patients’ physicians as well as nurses and the dietitian when they were available. I tended to focus on MCS and Symptoms scores, the two measures that affect psychiatric medications, referrals, and – to my mind – patient resilience in addition to medical intervention.

For units with fewer physicians, whether having a small or large number of patients, I understood that holding patient staffing sessions with nurses and dietitians as well as clinic managers, physicians, and the social worker (with or without the patient/family), education and information were much easier to provide. Given the many clinical and administrative social worker responsibilities, the flexibility of social workers is, definitely, the most important skill needed in a home dialysis clinic.

Part of my frustration was with the frustration patients expressed in completing it…the confusion on what questions meant and were asking, as well as the time. For experienced, long-term home dialysis patients, repeating the survey annually was tedious and some became resentful and refused to complete it. I was able to convince those patients to complete it every couple of years.

Another part of my frustration had to do with my loss of the KDQOL scoring and representation of the results for patients available from KDQOL-Complete, the system we used at our unit for several years before we were bought by a large dialysis corporation. That large dialysis corporation does not use KDQOL-Complete. The representation of results provided by KDQOL-Complete made it so much easier to interpret results to patients as well as to other staff. Without it, I had to use the original UCLA figures, when I had time, to translate raw scores to more meaningful, ranged scores for the last 4-5 years of my renal social work career.

Where to Go Now

So, where are we left with the full KDQOL clinically and its overall usefulness? I certainly would encourage all dialysis social workers to learn the history of the derivation of the current KDQOL-36 format and questions; interpret individual questions, not just a score for each scale; and take the time to ask and answer questions about patients’ responses and their feelings about the questionnaire and individual items. How a social worker educates and informs other staff as well as nephrologists on the scales on specific items, carves out time to “read” the other staff members about their interest in QOL and other psychosocial issues, and has sufficient interest to be able to educate and inform other staff takes tact and a lot of resilience of the social worker. It also takes commitment to the social worker and her/his contribution by clinic management and the nephrologist as leaders of the unit.

As for the notion of a single score, perhaps score ranges instead (much like normative ranges for medical laboratory tests) seem to make more sense than dealing with five individual scores which are often confusing to patients. I hope that is explored, especially ranges rather than one single score, vigorously and comes to fruition.

Go forth and, as you use it, assess and critique the KDQOL’s effectiveness and usefulness with your specific group of patients. Above all, have a discussion with (not just pontificate to) the patients to fully ascertain their feelings and life priorities. When you can, ask clinical research questions and get involved in clinical research. Also talk with other social workers, ask questions of the published and clinical “experts” who teach the KDQOL, and take workshops that discuss the intricacies, nuances, and interpretation of the KDQOL-36. If you can, use other formal clinical assessments as well as conversations with patients to get at QOL and potential issues that might provide barriers to a successful experience with home dialysis. And, finally, enjoy the ride and the patient interaction!

1. Stein DM, Welch J, Kraus M, Slaven, J. Health-related quality of life among patients receiving home dialysis therapies. J Neph Soc Work. 2015;39:10-18

2. Peipert JD, Nair D, Klicko K, Schatell D, Hays R. Kidney disease quality of life 36-item short form survey (KDQOL-36) normative values for the United States population and new single summary score. J Am Soc Nephrol. 2019; 30:654-663

3. Ghahramani N, Chinchilli VM, Kraschnewski JL, Lengerich EJ, Sciamanna CN. Effect of peer mentoring on quality of life among CKD patients: Randomized controlled trial. Kidney Dis 2021; 7:323-333