Aim of the study
This research project is aiming to evaluate a questionnaire that will assess your ability to participate in life activities that are meaningful to you.
Study type?
Online Survey.
Who is able to participate?
You can participate if you:
- are currently receiving dialysis (haemodialysis or peritoneal dialysis) OR
- have chronic kidney disease but are not receiving dialysis and don’t have a transplant
Where is the study happening?
Online.
Open and close dates of recruitment
24 February 2025 to 1 May 2025.
How do I get involved?
Follow this link: https://redcap.sydney.edu.au/surveys/?s=P7YP73FKTDFFN7AR
Summary
This research project aims to develop a questionnaire to assess the ability to participate in activities that are meaningful to you. This term is referred to as ‘life participation’. We hope this new, brief measure will be used in trials to understand and measure the impact of kidney disease on a persons ability to do life-important activities (such as employment, housework, study, family activities, personal activities and social engagement).
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).
After a week, you will be asked to complete some of the questionnaires again (approximately 2 minutes to complete) and lastly once more in 12 months’ time (approximately 10 minutes to complete).
The SONG-PD programme (Standardised Outcomes in Nephrology – Peritoneal Dialysis) is a global initiative to identify the most important outcomes for patients, which should be included in all research trials in PD. This would mean trials are testing treatment and care against outcomes that matter most to people receiving PD. Life participation was one of the outcomes prioritised by patients receiving PD. The researchers based at the SONG initiative in Australia would like patients from across the world to be involved in this study, to ensure the findings of their work apply globally in the future.
Has this study received ethical approval? Please provide REC number.
- University of Sydney: 2021/HE000114
- University of Queensland: 2024/HE002437
Lead investigators
- A/Prof Allison Jaure (nee Tong) – Sydney, Australia
- A/Prof Yeoungjee Cho – Brisbane, Australia
- Associate: Dr Cameron Burnett – Brisbane, Australia
- Associate: Ms Anastasia Hughes – Sydney, Australia
Who is funding the study?
The study is funded by an National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant (APP2009309) and Leadership Grant (APP1106716).