Going beyond Activity and Participation: Development of the DIF-CHUM—A patient-reported outcome measure for individuals with Dupuytren's contracture

This is a cross-sectional clinical measurement. There are currently no Dupuytren's contracture (DC)–specific, patient-reported outcomes (PROs) that can provide a thorough clinical portrait of the patients' perceptions with regard to the execution of regular activities. The purpose of this study was to present the development of the Dupuytren's contracture Impact on Function–Centre Hospitalier de l'Université de Montréal (DIF-CHUM), a DC-specific PRO. The development process involved consultation of 45 individuals with DC and 7 health professionals, existing literature, and DC-specific PRO. The DIF-CHUM is composed of 2 sections: section 1, Activity and Participation includes 8 items per hand, scored on Difficulty and Change scales; section 2, General Impact includes up to 18 items, scored on Difficulty, Importance, Change and Satisfaction scales. Preliminary evidence suggests that the DIF-CHUM demonstrates good content validity. The DIF-CHUM is designed to be a patient-centered measure of Activity and Participation and Functional Competence for individuals with DC that will provide hand therapists with a unique perspective of the impact of DC on patients' lives. Further validation of the DIF-CHUM, including its scoring, is under way. •The Dupuytren's contracture Impact on Function – Centre Hospitalier de l'Université de Montréal (DIF-CHUM) is an innovative patient-reported outcome that aims at providing hand therapists a thorough clinical portrait of their patients' perceptions with regards to the execution of regular activities and will be a helpful guide in the elaboration and monitoring of interventional strategies.•The DIF-CHUM was developed to promote the use of a patient-centered approach in hand rehabilitation.•The DIF-CHUM measures Activity and Participation but goes beyond to also measure Functional Competence.