A global team of researchers from Australia, the USA, UK, France, Korea, and the George Institute India has collaborated to develop SONG-LP, a tool to assess life participation of individuals who have undergone kidney transplants. Kidney failure often severely limits patients’ ability to engage in daily activities, making kidney transplantation a crucial treatment option, as it offers freedom from many of these restrictions.
This tool, developed through a consensus workshop involving 249 adult recipients from 20 countries, measures engagement in leisure, family, work, and social activities.
This questionnaire serves as a core patient-reported outcome measure, specifically designed to evaluate the ability of kidney transplant recipients to engage in various aspects of life, including leisure, family, work, and social activities.
The questionnaire itself is user-friendly, featuring a scale from 0 (never) to 4 (always) for participants to rate their engagement in each aspect of life. The total score is then calculated as the average of all four answers, providing a comprehensive assessment of the individual's life participation post-transplantation.
Speaking about the SONG-LP tool, Prof. Vivekanand Jha, Executive Director, The George Institute for Global Health, India, said, “The SONG-LP tool was designed to be to be user-friendly for kidney transplant recipients, and its high completion rate shows that it's easy for patients to use.
It has proven to be reliable and consistent over time, making it a valid measure for repeated assessments. The process of developing this tool was quite rewarding, and it was educational to hear patients’ and caregivers’ voices and understand their priorities. We hope that clinicians and researchers around the world including in India will use it to improve the quality of care so that it becomes more patient-centred and informs patient-relevant research.”
The team aims to conduct future research to include a more diverse group of kidney transplant recipients, ranging from those facing health issues to those in good health. This will help determine whether the observed high levels of life participation are consistent across the entire kidney transplant recipient community or if they apply more to specific.
Chronic kidney disease (CKD) is a growing global public health problem in terms of mortality, disability, and financial costs. Globally, around 13 per cent of the general population have some form of CKD.
A significant proportion of patients with CKD progress to end stage renal disease. Currently, renal dialysis and kidney transplantation are the only two types of treatment available for patients with end stage renal disease. Globally, the number of dialysis patients is projected to increase to 4.9 million by 2030.
