We are reaching out to people with lived experience of chronic kidney disease (CKD) and those on dialysis to undertake a survey to help validate a new measure of life participation. What is Life participation and why is it important? It is a term used to describe how well people with kidney disease can live their life and do activities that are important to them. We don’t have a way to measure this yet. Being able to measure your life participation means that we can better track how to improve your life both in clinical trials and at clinic reviews as well and change the focus from surviving to thriving with kidney disease. Who can participate? (A) are currently receiving dialysis (haemodialysis or peritoneal dialysis) (B) have chronic kidney disease but are not receiving dialysis and don’t have a transplant * you must also be over 18, speak English, and can complete online surveys. What will I need to do if I choose to help? You will be asked to complete an online questionnaire including some brief questions about yourself and questions about your mental health, ability to participate in meaningful activities, perceived kidney function, family support, and thinking and memory abilities (15 minutes to complete). You will be asked some questions (2 minutes to complete) in a weeks time, and then again in 12 months time (15 minutes to complete). What will happen to my information? Your personal information is encrypted in the University of Queensland. At the end of the survey, your information will be de-identified, then analysed and published internationally. You may choose to receive the results of the publication by selecting 'yes' to this response during the survey. Ethics is approved by the University of Sydney and the University of Queensland. How do I get involved? 1. Click this survey link for more information and to view the online consent form: https://redcap.sydney.edu.au/surveys/?s=P7YP73FKTDFFN7AR Please do not hesitate to reach out to us for more information should you require it. We greatly appreciate your help, to allow us to help you live your life better with kidney disease.
Patient experience research
Other
Volunteers
No reimbursement
(A) are currently receiving dialysis (haemodialysis or peritoneal dialysis) (B) have chronic kidney disease but are not receiving dialysis and don’t have a transplant
Email: [email protected]
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