Understanding the complexity of the kidney dialysis cohort

Dialysis patients experience a range of physical and mental symptoms that interact and influence one another. In her doctoral research, psychologist Judith Tommel wants to find the optimum approach to help these dialysis patients improve their quality of life. Tommel will defend her thesis on October 16.

“We need to make sure we avoid excluding patients. That means providing personalized care, especially when it comes to digital health care.'”

For patients with end-stage kidney disease, kidney function has declined below 15% of normal kidney functioning. Dialysis takes over the working of the kidneys as much as possible by filtering waste products and excess fluid out of the body.

Tommel explains, “Because the condition itself and the dialysis treatment have a big influence on the lives of these patients, the quality of life of most patients is much lower than that of healthy people.

“We wanted to do something about that: first we needed to understand better what is actually going on with dialysis patients whose quality of life was poor; then we needed to better assess the condition to improve the recognition of symptoms and a low quality of life; finally we needed to find the best and most suitable way of treating a poor quality of life.

“To better understand low quality of life, we examined several factors that might play a role. Patients filled in questionnaires at two points in time: 175 patients at the time of the first measurement, and 130 six months later. How patients think about their condition seems to have a significant influence on their quality of life.

“We found, for example, that feeling helpless can predict a decrease in quality of life over a period of six months. We also looked at what patients themselves believe are the most important complaints or problems. For almost all patients, improving their fatigue was their number one priority. The other priorities differed strongly from patient to patient.

“To better measure quality of life, we developed a number of measurement tools. We calculated norms for commonly used questionnaires so that we could better compare patients’ scores and more easily identify significant scores that warrant extra attention.

“We also developed the Personal Profile Chart that shows patients’ scores in clear traffic light colors: green = few complaints; orange = moderate complaints; red = serious complaints. A short explanation for each score helps patients and doctors interpret the results of the questionnaires.

“We also developed a personalized questionnaire, the Personalized Priority and Progress Questionnaire. This questionnaire charts patients’ priorities and measures changes in those areas that patients themselves have prioritized.

“To treat poor quality of life, we looked at cognitive behavioral therapy via the internet, guided by therapists. Patients were divided into two groups: the control group received the standard care and the intervention group also received online treatment. As it proved difficult to gather enough patients for the study (partly as a result of COVID), we supplemented our research with interviews with patients, doctors and therapists.

“We identified no differences in quality of life between the groups, but we did find that the intervention group patients improved considerably in the areas they themselves had identified as a priority. The treatment proved not to be an optimal fit for the target group. Patients often found it difficult and preferred personal, simpler assignments and a lower intensity of treatment.

“What surprised me was how difficult online treatment was for many patients. We based the treatment on research with people with other chronic conditions, including kidney patients not on dialysis.

“The treatment generally suited these patients well, but our patients found the online format and the assignments too difficult and demanding given the severity of their illness. I think that these findings apply not only to dialysis patients, even though this is a unique, complex group.

“One in five people in the Netherlands have limited computer skills. That means we therefore need to be careful with extensive digitalization of care and always be aware of the individual’s needs, wishes and skills. We have to provide individually tailored care, particularly when using digital care, to make sure we don’t exclude patients.

“The other hospitals and dialysis centers were essential to my research. We worked together with six different hospitals and dialysis centers across the Netherlands, from Venlo to Groningen and from Leiden to Nijmegen. These centers did the screening and invited patients to take part in the study.

“In addition, the nurses and nephrologists were able to keep a finger on the pulse because they were so close to the patients. In my new job at University Medical Center Groningen, I will be working on digitalizing care and the challenges that go with this. The lessons I learned in my doctoral research are going to prove extremely useful.”