Life participation

Why SONG-Tx Life participation?

Life participation was identified as a high priority outcome domain by patients/caregivers and health professionals through the international SONG-Tx Delphi Survey and consensus workshops. Life participation is defined as the ability to participate in key activities of daily living including work, study, family, travel, hobbies, recreational and social activities. This outcomes also signifies a return to “normal” life, and having a sense of purpose. Life participation may be affected by the treatment burden including side effects, cognition, and mental health issues.

Currently, life participation may be measured using a range of approaches including specific measures of participation and subscales of generic measures of quality of life. These measures vary widely in terms of the type of participation (e.g. work, social, recreational), usability, reliability, and population for which it was developed. Accurate and consistent assessment of life participation is required to inform the development and evaluation of interventions for kidney transplant recipients, particularly in the context of trials.

The aim of SONG-Tx Life Participation is to establish a patient-reported core outcome measure (i.e. short survey) for life participation that is meaningful, valid, and feasible for use in all clinical trials involving patients with a kidney transplant.

SONG-Tx Life Participation Expert Working Group

Michelle Josephson (Chair) | University of Chicago, United States
Curie Ahn | Seoul National University Hospital, South Korea
Fabienne Dobbels | University of Leuven, Belgium
Fergus Caskey | University of Bristol, United Kingdom
Jane Tan | Stanford University, United States
Jayme Locke | University of Alabama at Birmingham, United States
Kevin Fowler | Kidney Health Initiative, Patient Family Partnership Council; President, The Voice of the Patient, United States
Quinetta Taylor | United States
Sheila Jowsey-Gregoire | Mayo Clinic, United States
Vivekanand Jha | George Institute for Global Health, India
Zeeshan Butt | Northwestern University, United States
Angela Ju (Project coordinator) | The University of Sydney, Australia

Project updates

Systematic review

We have completed a systematic review of of patient-reported outcome measures used to assess life participation, which has just been published in the American Journal of Transplantation.

Consensus workshop

A stakeholder consensus workshop on establishing a core outcome measure for life participation was held 1st May 2017. Twenty-five kidney transplant recipients/caregivers and 33 health professionals from eight countries participated.  The workshop report has now been published in Transplantation

Pilot study

Current, we are conducting a pilot study using cognitive interviews to assess the PROMIS Ability to Participate in Social Roles and Activities (Short Form 4a). This will be followed by an international validation study.