By Jolie Leung
We are proud to announce that the project “International Study to Field-Test a New Patient-Reported Outcome Measure for Children with Lower Limb Differences” has received funding from the Canadian Institutes of Health Research (CIHR). Led by Dr. Anthony Cooper, Head of the Division of Pediatric Orthopaedics at the UBC Department of Orthopaedics and Dr. Harpreet Chhina, Research Associate in the UBC Department of Orthopaedics, this project will complete the development of LIMB-Q Kids which will be the first validated and internationally applicable tool to measure Health-Related Quality of Life (HRQL) as reported directly by children with lower limb differences. For this project, Dr. Cooper and Dr. Chhina work closely with Dr. Anne Klassen, a Professor in the Department of Pediatrics at McMaster University. Dr. Klassen is a world-renowned expert in the development of patient reported outcome measures for children and adults.
Lower limb differences are a range of debilitating conditions affecting the length and growth of a child’s limb. These conditions may result in one limb being shorter than the other, abnormally developed joints, and in some cases, limbs may be partially or completely absent. They can substantially limit physical function, and may be accompanied by behavioural, emotional, or social adjustment issues. Currently, there is no way of evaluating these effects, and there is a lack of evidence to recommend one treatment over another. The lack of comparative effectiveness evidence for the two main treatment options, including reconstruction and amputation, limits the ability of healthcare providers to counsel patients and patient families on the best evidence-based treatment option for them.
The goal of this project is to fill this gap by completing the development of a valid and internationally applicable patient reported outcome measure that can be used by researchers and clinicians around the globe to measure outcomes of lower limb differences.
At this time, 21 sites from 15 countries are participating in this study, with over 350 LIMB-Q Kids surveys completed. Danish and German translations of LIMB-Q Kids are ready and in use at their respective sites for data collection, with current efforts dedicated to translation into Arabic, Finnish, Hindi, Hebrew, Luganda, Mexican Spanish, Swahili, and Portuguese. The final goal is to collect 500 completed LIMB-Q Kids questionnaires by end of summer 2023 and to use this data to perform quantitative analysis to finalize the LIMB-Q Kids for use in clinical practice and research.
In the present era of sophisticated and expensive orthopaedic procedures, many of which are designed primarily to improve function and HRQL, consideration of mortality and morbidity alone is no longer sufficient. For patients, surgeons, and healthcare payers to make well-informed decisions, reliable and meaningful data collected using patient reported outcome measures such as LIMB-Q Kids are needed.
“This project is a great example of international collaborative research led by UBC Orthopaedics investigators, and the CIHR award confirms its importance and high quality,” adds Dr. David Wilson, Associate Head, Research of the Department of Orthopaedics. “CIHR funding goes to only the strongest applications, and every CIHR grant is a badge of honour for the principal investigator, the team and the Department.”
This project has made significant progress over the past few years. Thanks to the funding received from three grants including an OREF grant from UBC Department of Orthopaedics and two from the Canadian Orthopaedic Foundation. Additionally, the Limb Reconstruction Research program is supported by research funding from the BC Children’s Hospital Foundation. The recent CIHR funding will enable this outcome measure to be translated, culturally adapted, and rigorously tested in several countries around the world, elevating the impact of this work to global level.
