Survey Visualizes CKD Self-Management Gaps Across Knowledge, Social Systems, and Disaster Prep

The with Kidney Project, run by general incorporated association P-PEC, conducted three rounds of 50-item self-check surveys targeting CKD patients, their families, and at-risk individuals, gathering 513 total responses. The surveys covered three themes: CKD comprehension, living-with-illness wisdom, and disaster preparedness. Results showed basic knowledge such as salt reduction and lifestyle improvement was well established. However, understanding varied on disease mechanisms, stage-specific self-management, and complication knowledge including bone and constipation issues. Social support system awareness was notably low, with programs like the Livelihood Welfare Fund Loan System and the Self-Reliance Support System for the Needy largely unknown, despite strong patient-provider communication skills. The widest gap appeared in disaster preparedness, where theoretical knowledge did not translate into action: few had copied referral letters, stockpiled therapeutic meals, waterproofed insurance cards, or prepared blood pressure monitors for evacuation. Based on these findings, the project published 82 single-topic CKD information sheets designed for self-management, medical team sharing, and daily life integration. The sheets were co-created by patients, healthcare professionals, and life science companies through the with Kidney Project. Full sheets are available at jinlab.jp.