The "with Kidney Project," which disseminates information about Chronic Kidney Disease (CKD), conducted a survey on "patient explanations" targeting 60 healthcare professionals involved with patients suffering from kidney disease or diabetes.

CKD is a chronic illness with few subjective symptoms, making continuous treatment and lifestyle management crucial. Therefore, it is essential for patients to understand their illness and continue self-management in cooperation with healthcare professionals.

We are pleased to announce the results of our survey on what content healthcare professionals explain to patients and what aspects they find difficult.

Survey Content

About CKD (10 items)

About lifestyle habits (3 items)

About hypertension (2 items)

About pharmacotherapy (3 items)

Other (2 items)

Survey Findings

1 Overall, "Generally able to explain"

On average across all 19 items, 75.0% responded that they could "explain well" or "explain somewhat well."

2 Basic information is explainable

A majority of respondents indicated they could explain basic concepts such as CKD being a progressive disease, the importance of regular check-ups, management of diet and lifestyle habits, and renal anemia.

3 Some topics are difficult to explain

On the other hand, a relatively large number of respondents answered that they could "not explain very well" for the following items:

・Gut-kidney axis (*1)

・Psychosocial aspects and mental symptoms

・Relationship between dyslipidemia/metabolic syndrome and CKD

・Medical costs and social security systems

・Polypharmacy (*2)

・Sick day (*3), sick day rules (*4)

・CKD-MBD (*5)

*1 The relationship where the gut environment and kidneys mutually influence each other.

*2 Not simply taking many medications, but a state where problems such as side effects are likely to occur due to the large number of medications.

*3 A day when one feels unwell. A state where individuals with CKD or diabetes experience poor health due to fever, diarrhea, vomiting, loss of appetite, etc.

*4 Basic measures to prevent dehydration and medication effects during sick days.

*5 Abnormalities in bone and mineral metabolism associated with CKD. Bones become brittle, and cardiovascular disease risk increases due to vascular calcification.

4 Efforts to tailor explanations to patients

Efforts mentioned include avoiding technical jargon and adjusting explanations based on the patient's level of understanding and acceptance. Many also responded about referring patients to other professionals, highlighting the importance of interdisciplinary collaboration.

5 CKD-specific "difficulty in explanation"

The nature of the disease, which has few subjective symptoms and is difficult for patients to accept, was also noted as a cause of difficulty in explanations.

These findings indicate that healthcare professionals not only convey knowledge but also devise explanation methods tailored to each individual patient.

Survey Overview

Survey Method | Web survey

Target Audience | Healthcare professionals involved with patients suffering from kidney disease or diabetes

Survey Period | November 21, 2024 (Fri) - April 20, 2026 (Mon)

Number of Valid Responses | 60

▼ Details of this survey result are here

https://www.jinlab.jp/withkidney/survey/survey14_202411.html

"82 CKD Sheets" Reflecting Survey Results Now Available

The "with Kidney Project" has focused on translating the challenges and trends identified in the survey into practical tools for self-management and information organization. The 82 CKD Sheets, which are now available, were created as part of this effort.

Information for living with chronic kidney disease is organized into one theme per sheet, with the following three objectives beyond simply "learning about the disease":

・Organize necessary knowledge

・Share with healthcare professionals and family

・Connect to self-management in daily life

The CKD Sheets were created within the "with Kidney Project," which involves patients, healthcare professionals, and life science companies.

▼ List of CKD Sheets https://www.jinlab.jp/withkidney/sheets/

Service Overview

About JinLab

Opened in April 2013, JinLab is a platform for those facing kidney disease and dialysis, aiming to provide accurate information, foster empathy, support mutual assistance, and promote independence.

URL | https://www.jinlab.jp/

【A Message from Takeshi Shukunobe, Director of JinLab】

I was diagnosed with kidney disease at the age of 3. I have been on dialysis for over 39 years, from age 18 to the present. I know the hardships and suffering of kidney disease. That is precisely why I sincerely want to save as many kidney disease patients as possible! I want to reduce the number of people suffering from kidney disease.

"JinLab" was born from my own experiences and feelings.

I would be truly happy if it could help reduce the worries and suffering for many people, including those who are concerned about their kidneys or have received a diagnosis from a test.

Corporate Overview

Corporate Name | General Incorporated Association PEPEC

Location | 6-33-1 Minami-Karasuyama, Setagaya-ku, Tokyo 157-0062 Sunrise Plaza 501

Representative Director | Takeshi Shukunobe

Established | January 2019

Business Activities | Media operation, event planning and operation, support for organization management, utilization of patient voices, employment support/continuation support, policy advocacy/research, etc.

Website | https://ppecc.jp

FACT BOX

  • Source: PR TIMES
  • Category: Survey