Promoting shared decision making for people with advanced chronic kidney disease
Overview
Many people with advanced chronic kidney disease (CKD) or kidney failure have a poor quality of life and a high risk of death. Some people need dialysis when they are diagnosed with kidney failure. Others have time to decide whether and how they would wish to have treatment for kidney failure. These are difficult decisions and accurate information about the chances of survival would help people make choices that reflect what they prefer and value. Patients and their healthcare teams may use calculators called prediction tools to identify the risk of important health events. Unfortunately, there is lack of appropriate prediction tools to help people decide how to treat kidney failure and its complications.
The purpose of this research study is to create tools that accurately predict the chances of survival with kidney failure for individual patients. We would like to hear more about patient perspectives on how to build a tool that accurately calculates the prognosis for survival for a person with advanced CKD. We are looking for patients with lived experience of kidney failure to take part in a workshop.
The study will involve a workshop scheduled for November 13th, 2024. You can attend the workshop in person or online. We will ask you questions about what you think is important to build a tool that accurately calculates the chances of survival for a person with kidney failure. During the meeting we will ask you to generate and prioritize ideas over a series of group discussions.
Before the meeting we will ask you to complete a short questionnaire about your demographics and medical history. We will e-mail you with graphical summaries and sample discussion questions to think about prior to the workshop.
A gift card for $100 will be offered as a token of appreciation for your participation in the workshop. An additional $25 will be provided as compensation for your time completing the questionnaire and reviewing the discussion guide. Any out-of-pocket expenses related to attending the workshop in person (such as parking, etc.) will be reimbursed.
Eligibility
- 18 years or older
- Comfortable communicating in English
- A person living with kidney failure (either eGFR<15mL/min/1.73 m2 or receiving kidney replacement therapy)
- A caregiver for someone living with kidney failure (either eGFR<15mL/min/1.73 m2 or receiving kidney replacement therapy)
- A bereaved caregiver of someone who died with kidney failure
- Available on November 13th, 2024, to participate in the workshop
