An international group of researchers develop a user-friendly, reliable, and valid tool to measure the ability of people to engage with their lives after kidney transplantation.

A global team of researchers from Australia, the U.S., U.K., France, Korea, and George Institute India have collaborated to develop a tool (SONG—LP) to assess life participation—or the ability to engage in daily life activities—of people who have had kidney transplants. The study is published in Kidney International Reports.

Kidney failure imposes major limitations on the ability of patients to participate in activities of daily living. Freedom from many of these restrictions is one of the most important benefits of kidney transplantation, the best treatment for patients with kidney failure.

In a global consensus process involving more than 1,100 patients, caregivers, and health professionals from more than 70 countries, life participation was established as a critically important outcome for kidney transplant recipients. The ability to consistently measure this outcome is valuable to inform routine care, clinical audit, and research.

Recognizing the importance of life participation among kidney transplant patients, researchers collaborated in a global initiative involving 249 adult kidney transplant recipients from 20 countries to develop a tool to measure this important parameter for transplant recipients.

This was done through a consensus workshop with inputs from all relevant stakeholder groups (patients, caregivers, and health professionals) on developing content for the SONG-LP (Standardized Outcomes in Nephrology life participation), a core patient-reported outcome measure for life participation in kidney transplant recipients.

The tool is in the form of a questionnaire called SONG-LP (Standardized Outcomes in Nephrology life participation) for adults who had kidney transplants. The questionnaire asks about four aspects of their life: leisure, family, work, and social activities. The participants answer each question on a scale from 0 (never) to 4 (always). The total score is the average of all four answers.

The SONG-LP instrument assesses the well-being of individuals with kidney transplants. It evaluates their capability to actively participate in daily life activities, covering various aspects such as leisure, family, work, and social interactions.

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-centered 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 a consistent across the entire kidney transplant recipient community or if they apply more to specific.