Patients With CKD Report Burden Could Improve Through Communication With Physicians


Speaking with patients diagnosed with chronic kidney disease (CKD) about the burdens associated with care could help improve understanding of the disease and their communication with health care professionals.

A study published in Advances in Therapy found that therapeutic options, communication with patients, and the role of the patient community could be improved by understanding the burdens and thoughts of patients who have been diagnosed with chronic kidney disease (CKD) in Japan.

CKD is found in approximately 13.3 million people in Japan, which equates to 1 in 8 adults. Treatment for CKD aims to slow the decline of renal function and prevent the development of cardiovascular diseases. This study aimed to speak with patients with CKD to learn about their experiences and perceptions of the disease and its treatment in patients who have not received dialysis or renal transplantation.

This study gave their participants a survey and had respondents answer questions from an advisory board. The survey was anonymous and was conducted from October 30 to November 6, 2020. Participants who took the survey were aged 20 years and older with a self-reported diagnosis of CKD and had not received dialysis or renal transplantation. There were 32 questions to assess the backgrounds, experiences and awareness of the disease and treatment, daily burdens, and future treatment needs and expectations in patients with CKD.

The advisory board meetings, which were conducted to elaborate on the trends identified in the survey, took place using Zoom on December 6, 2020. The board was attended by patient participants, a trascriptionist, and a moderator, as well as 2 representatives from the sponsors.

There were 342 participants included in the survey, with most participants being men (67.4%) and aged between 50 and 60 years (28.5%). Advisory board members were mostly female (4 of 5 participants).

Approximately 80% of the participants in the survey were diagnosed with CKD during a routine check-up or treatment for another disease, with 60% of participants diagnosed by a nephrologist. About 20% of participants received a diagnosis of CKD after 5 years of presenting symptoms. Abnormal renal function, hypertension, dyslipidemia, and diabetes were the most common pre-existing conditions for CKD. There were 3 patients in the advisory board group who had a diagnosis of CKD from a routine check-up.

About 70% of participants in the survey felt anxious about their future at the time of diagnosis. The advisory board participants had varied responses, including being upset, shocked, worried, and hopeless.

Patients in the survey used pharmacotherapy and dietary management as their main treatments for CKD before and after their diagnosis. However, the proportion of patients receiving these therapies increased after diagnosis compared with before (pharmacotherapy, 76.1% vs 46.0%; dietary management, 46.3% vs 18.3%). All advisory board participants were participating in a dietary management program.

Only 44.8% of participants in the survey were satisfied with their current treatment, with 18.0% unsatisfied. Advisory board participants had treatment satisfaction due to the disease not progressing further and biomarkers remained stable. Dissatisfaction came from a lack of long-term efficacy and limited options for pharmacotherapy to treat other diseases.

Only 14.3% of survey participants were given treatment goals. About two-thirds of participants (65.7%) of participants in the survey and all the advisory board participants did not know about CKD until their diagnosis.

The restricted diet was cited as the most common burden to daily life. About half of the survey participants had no outside support for their disease, whereas the advisory board participants had the support of their family members. Dialysis was the most cited reason for concern for the future in both groups.

There were some limitations to this study. Participants were mainly in their 50s and 60s and did not include many older adults 70 years and older. Participants were recruited through patient panels, which could have led to selection bias. The responses from participants may be affected by recall bias. The diagnosis of CKD was self-reported.

The researchers concluded that understanding the thoughts and burdens of patients with CKD can help with improve communication with patients in the predialysis stage of the disease.


Yagi N, Shukunobe T, Nishimura S, Mima A. Experience and daily burden of patients with chronic kidney disease not receiving maintenance dialysis or renal transplantation. Adv Ther. Published online November 29, 2022. doi:10.1007/s12325-022-02341-9

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