When people develop kidney failure they face one of the biggest health decisions of their lives: should they start dialysis or choose a more conservative approach focused on comfort and quality of life rather than extending life through treatment?

This decision is especially hard for older adults and people living with frailty, those whose health is fragile and who tire easily. Right now, when people living with frailty make this choice, they don’t have information tailored to their situation. Current decision-making tools talk about dialysis and conservative care, but they say nothing about frailty, what living with frailty means for outcomes, or how each treatment choice might affect someone’s independence, mobility, and ability to do the things that matter to them.

What We’re Doing

We’re laying the groundwork for a new tool: a frailty-informed decision support resource that will help people living with frailty and kidney failure make a choice that fits with their own values, priorities, and goals.

We are actively looking for people with lived experience of kidney failure and frailty to join us as research partners in this work.

Participant Commitment:

• All meetings are virtual.
• 4-6 meetings per year (quarterly steering + work stream-specific)
• Roughly 1-2 meetings per month average, or about 3-5 hours per month

Role:

• Use your expertise in lived experience of kidney disease to contribute to the planning phase activities.
• Participate in virtual meetings/consultations over the 12-month planning period.
• Provide input on the needs assessment design, patient/clinician consultation materials, and content framework development.