A qualitative study found that patients with chronic kidney disease (CKD) were more likely to avoid thinking about their disease due to the stress of dialysis.
A study published in Journal of Nephrology found that talking about dialysis and chronic kidney disease (CKD) was avoided by most patients because dialysis was the source of much of the stress associated with the disease. The researchers also found that family involvement varied across CKD treatment plans.
The researchers used the CKD Renal Epidemiology and Information Network (CKD-REIN) study for their population. CKD-REIN enrolled 3033 CKD patients not on dialysis between 2013 and 2016. At follow-up 3, 3 years after study initiation, 2260 patients who had not started kidney replacement therapy (TRK) were invited to register for a qualitative survey.
All participants were assessed using the Hospital Anxiety and Depression Scale and the Center for Epidemiological Studies-Depression scale, with a score greater than 8 signifying symptoms of anxiety. The 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 level of education, greater anxiety, better literacy skills, and discussed KRT more often with loved ones. The mean (SD) age of surveyed participants was 62.2 (12.2) years, 42% were female, and 68.0% had stage 4-5 CKD.
A lexicometric analysis was carried out from the corpus of texts including the interviews. This contained 264,875 words and 5,715 units of context, which were divided into 4 classes.
Disease rate (Class 1) comprises 29% of the corpus and is characterized by temporal indicators (the week and year) and words showing temporal relationships (since and when). This class was associated with anxious and depressed patients, failure to participate in patient education about KRT, and not discussing KRT with loved ones. Patients with stage IV CKD are significantly absent from this class.
Consider dialysis (Class 2) represents 15% of the corpus and is characterized by 2 sub-classes: dialysis modalities and daily life and patient education and therapeutic choice. This class finds dialysis numerous and painful. Class is associated with stage IV CKD, attendance at patient education sessions, discussion of treatment with family, and no symptoms of depression.
Family and Transplantation (Class 3) comprises 13% of the corpus and is characterized by 2 subclasses: talking about illness and talking about transplantation. The mention of dialysis is significantly absent from this class. Researchers have found that some patients don’t talk about their illness and the amount of detail they use depends on who they talk to. This class is associated with depression and participation in patient education sessions and contrasts with class 2, which implies that dialysis and transplantation do not appear together in a patient’s speech.
Disease, choice of treatment and introspection (Class 4) comprises 43% of the corpus. The class is divided into 3 subclasses: normal living, avoiding thinking about CKD, and participation in research, choice of treatment and acceptance:
- Belonging to the normal life subclass implies that some patients believe they have a normal life and do not think about their illness on a day-to-day basis.
- Belonging to the CKD thinking avoidance subclass demonstrates that while CKD has little effect on day-to-day life, patients report not thinking about their illness. Some words found in this subclass do not correspond exactly to this conclusion (try, manage, disturbs, occurand for the moment), Nevertheless.
- Patients in the research participation, treatment choice and acceptance subcategory tend to think that decision-making is not a current concern. Class 4 is characterized by demonstratives, relatives and indefinites which designate without naming.
There were some limitations to this study. The study was cross-sectional and reflected only what the patients were feeling at the time, which meant that some patients were not faced with 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 their qualitative nature, and the researchers hypothesized that respondents were more concerned about KRT due to their youth, higher education, severity of disease chronic kidney disease and their anxiety.
“This study highlights that cognitive avoidance is common in patients and that dialysis and transplantation belong to 2 distinct decision-making processes,” the authors write.
Montalescot L, Dorard G, Speyer E, et al. Patient perspectives on chronic kidney disease and treatment decision making. Speeches by participants in the French CKD-REIN cohort study. J Nephrol. 2022;35(5):1387-1397. doi:10.1007/s40620-022-01345-6