Understanding treatment burden in hemophilia: development and validation of the Hemophilia Treatment Experience Measure (Hemo-TEM).

Meryl BrodDonald M BushnellJesper Skov NeergaardLaura Tesler WaldmanAnne Kirstine Busk

Published in: Journal of patient-reported outcomes (2023)

Findings from the concept elicitation, cognitive debriefing, and psychometric validation phases provide evidence that the Hemo-TEM is a well-designed, valid, and reliable measure of the burden of hemophilia treatment, including treatment impact on adolescent and adult PWH.

Keyphrases

young adults
mental health
risk factors
replacement therapy