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Journal article

User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study

Abstract

BACKGROUND: The Patient-Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire is a tool for assessing the quality of life and disease burden in people living with hemophilia. OBJECTIVE: The objectives of our study were (1) to assess the needs of relevant stakeholders involved in the use of PROBE, (2) to develop the software infrastructure needed to meet these needs, and (3) to test the usability of the final product.

Authors

Germini F; Debono VB; Page D; Zuk V; Kucher A; Cotoi C; Hobson N; Sevestre M; Skinner MW; Iorio A

Journal

JMIR Human Factors, Vol. 9, No. 1,

Publisher

JMIR Publications

DOI

10.2196/30797

ISSN

2292-9495