“A new patient-reported outcome measure for children and adolescents with lower limb differences.”

CONCEPT-DRIVEN APPROACH

LIMB-Q Kids is a rigorously developed patient-reported outcome measure that can be used to measure outcomes in children and adolescents with lower limb differences. Lower Limb Differences can arise from a spectrum of disorders, which can be either congenital or acquired. LIMB-Q Kids was developed from concept elicitation interviews with 79 patients with lower limb differences and their parents from Canada, Ethiopia, India and the USA. To establish content validity, 17 cognitive debriefing interviews were conducted with patients and input was obtained from 23 clinical experts from Australia, Canada, Ethiopia, India, UK, and the USA. LIMB-Q Kids was then field-tested internationally with 800 patients from 16 sites in 7 countries.

MODULAR DESIGN

The conceptual framework for LIMB-Q Kids covers 3 domains: appearance, health-related quality of life, and symptoms. Each domain is composed of multiple independently functioning scales. The variety of scales provides flexibility to choose the subset of scales best suited to measure the outcomes of interest in any given study or clinical situation. An advantage of the modular structure, with individually scored scales is that new scales can be added as gaps are identified.

Scale Structure:

APPEARANCE

The LIMB-Q Kids module includes 9 independently functioning scales that measure outcomes important to patients from their perspective. The LIMB-Q Kids modular approach allows clinicians and researchers to administer the subset of scales relevant to their situation.

This scale measures how much the participant likes the look of their leg(s). Items ask about the appearance of the leg in terms of length, size, and impact of clothing, as well as in comparison to other people’s legs.

HEALTH-RELATED QUALITY OF LIFE

Four scales measure aspects of health-related quality of life for patients with lower limb differences. These scales measure leg-related distress and physical, psychological, and social function.

SYMPTOMS

Four scales measure symptoms related to foot and ankle, hip, knee and the leg in patients with lower limb differences.

LIMB-Q KIDS FRAMEWORK

Australia

Children’s Health Queensland Hospital

Germany

UKM Uniklinikum Muenster

Brazil

Institute of Orthopaedics and Traumatology

India

Post Graduate Institute of Medical Education and Research

Deenanath Mangeshkar Hospital and Research Centre

UK

Sheffield Children's Hospital

Royal National Orthopaedic Hospital

Royal Hospital for Sick Children Edinburgh

Great Ormond Street Hospital for Children

Leeds Teaching Hospitals NHS Trust

Canada

British Columbia Children’s Hospital

Alberta Children’s Hospital

Children's Hospital of Eastern Ontario (CHEO)

Shriners Hospitals for Children, Montreal

Saudi Arabia

Taibah University

Helping to improve the health-related quality of life of children with lower limb differences.

Denmark

Aarhus University Hospital

Israel

Alyn Hospital

US

Nationwide Children’s Hospital, Columbus

UCSF Benioff Children’s Hospital Oakland

Scottish Rite Hospital for Children, Dallas

Phoenix Children’s Hospital

Ethiopia

CURE Ethiopia Children's Hospital

Finland

Tampere University Hospital


LIMB-Q Kids Applications

RESEARCH

 LIMB-Q Kids can be used in research studies and clinical trials to evaluate and compare different treatment approaches for children with limb differences.

INDUSTRY

Specifically designed to meet the standards and expectations of regulatory bodies, making it suitable for use in product development and evaluation.

BENCHMARKING

Supports quality improvement initiatives by providing a reliable tool for benchmarking patient-reported outcomes across institutions or treatment programs.

PATIENT CARE

Developed using modern psychometric methods to ensure its effectiveness in clinical settings, helping to inform and guide patient-centered care.

Updates:

April 2025: Field Test Manuscript has been accepted for publication in the Journal of Patient-Reported Outcomes (JPRO)! Licensing details coming soon…

February 2024 - The field test study for Limb-Q Kids is now complete! Congratulations to our 16 collaborators that contributed to this milestone! During this time we collected 800 surveys from 8 countries around the world.

Co-developers of LIMB-Q Kids: