SHAPE-UP: Shriners Hospital Arthrogryposis Pediatric Evaluation – Upper Extremity

Theme: Measurement Development & Psychometrics

SHAPE-UP is the first AMC-specific upper extremity functional assessment tool designed to evaluate the unique ways children with AMC perform daily tasks despite upper-limb contractures.

The project progressed through:
• Scoping reviews & patient-partnered item generation, identifying meaningful activities such as grasping objects, bringing items to the mouth, and self-care tasks.
• A modified Delphi process with 40 international clinicians and experts, establishing consensus on clinically relevant items.
• A large multi-site validation study involving 120 children across six Shriners sites, using Rasch Measurement Theory to create a robust, psychometrically sound item bank.
• Reliability and responsiveness testing, including inter-rater, test–retest, and sensitivity to change following upper extremity surgery.

Once complete, SHAPE-UP will provide clinicians with a standardized, reliable assessment that reflects real functional performance and compensatory strategies—significantly improving evaluation and treatment planning for children with AMC.

Funding: 

Shriners Children’s 79149 (2024-2027)

Shriners Children’s 79152 (2021-2023)

OEQ-REPAR (2017-2019) awarded to Caroline Elfassy

Fonds de la Recherche du Quebec- Santé awarded to Caroline Elfassy

CRIR Doctoral Studentship awarded to Caroline Elfassy