A qualitative study found that patients with chronic kidney disease (CKD) were more likely to avoid thinking about their disease because of the stress from dialysis.
A study published in Journal of Nephrology found that talking about dialysis and chronic kidney disease (CKD) was avoided by most patients, as dialysis was the source of much of the stress relating to the disease. Researchers also found family involvement varied by CKD treatment plans.
The researchers used the CKD Renal Epidemiology and Information Network (CKD-REIN) study for their population. CKD-REIN enrolled 3033 patients with nondialysis CKD between 2013 and 2016. At the third follow-up, 3 years after the study began, 2260 patients who had not started kidney replacement therapy (KRT) were invited to enroll in a qualitative investigation.
All participants were evaluated via the Hospital Anxiety and Depression Scale and the Center for Epidemiologic Studies-Depression scale, with a grade above 8 signifying anxiety symptoms. Interviews took place between January 2018 and January 2019.
Participants who consented to an interview were younger, less likely to be widowed, and had a higher education level, greater anxiety, better literacy skills, and more often discussed KRT with relatives. The mean (SD) age of the interviewed participants was 62.2 (12.2) years, 42% were women, and 68.0% had stage 4-5 CKD.
A lexicometric analysis was done using the text corpus comprising the interviews. This contained 264,875 words and 5715 units of context, which were divideds into 4 classes.
Rhythm of illness (Class 1) consisted of 29% of the corpus and is characterized by temporal indicators (week and year) and words demonstrating temporal relationships (since and when). This class was associated with anxious and depressed patients, nonattendance at patient education about KRT, and not talking about KRT with relatives. Patients with stage IV CKD are significantly absent from this class.
Considering dialysis (Class 2) consists of 15% of the corpus and is characterized by 2 subclasses: dialysis modalities and daily life and patient education and treatment choice. This class finds dialysis to be numerous and burdensome. The class is associated with stage IV CKD, attendance at patient education sessions, discussions about treatment with their family, and no depression symptoms.
Family and transplantation (Class 3) consists of 13% of the corpus and is characterized by 2 subclasses: talking about the illness and talking about transplantation. Mention of dialysis is significantly absent from this class. The researchers found that some patients do not speak about their illness and the quantity of details they use depends on the person they talk to. This class is associated with depression and attendance at patient education sessions and opposes Class 2, which implies that dialysis and transplantation do not appear together in a patient's discourse.
Disease, treatment choice, and introspection (Class 4) consists of 43% of the corpus. The class is divided into 3 subclasses: a normal life, avoiding thinking about CKD, and research participation, treatment choice, and acceptance:
There were some limitations to this study. The study was cross-sectional and only reflected what the patients were feeling at the time, which meant that some patients were not facing KRT decision making. It was also based on word count, which can be problematic if people used different words to describe the same or similar experiences. The results are also not generalizable due to the qualitative nature, and the researchers hypothesized that the interviewees were more concerned with KRT due to their youth, higher education, severity of CKD, and anxiety.
“This study underlines that cognitive avoidance is common in patients and that dialysis and transplantation belong to 2 distinct decision-making processes,” the authors wrote.
Montalescot L, Dorard G, Speyer E, et al. Patient perspectives on chronic kidney disease and decision-making about treatment. Discourse of participants in the French CKD-REIN cohort study. J Nephrol. 2022;35(5):1387-1397. doi:10.1007/s40620-022-01345-6