An Electronic Patient Decision Aid to Support Informed Choices for Surgical Treatment of Congenital Adrenal Hyperplasia: Development and Prototype Validation
Principle Investigator: Dr. Luis Braga
Funded By: McMaster Surgical Associate Grant, Canadian Urological Association Grant
Study Status: Ongoing - Stage 1
The primary objective of this study is to determine the optimal design of a patient decision aid for surgical treatment of congenital adrenal hyperplasia. This can be acheived through 3 stages; a persona-scenario approach (stage 1) to inform the design of the PtDA, the public and patient engagement evaluation tool (stage 2) to evaluate the persona-scenario process, and a demographic survey of the study participants (stage 3). We are in stage 1 of the study, in which we aim to recruit 6 parents and 4 health care providers. Parents will be purposefully selected to include those who have already considered surgical treatment and those who are considering surgical treatment.b. Health care providers who are involved in providing care or support to parents/families of children diagnosed with congenital adrenal hyperplasia will be selected. The study is being carried out at McMaster Children's Hospital.
For more information on the study, please contact the Research Coordinator:
Melissa McGrath, BASc. (Hons)
phone:905-521-2100 x. 73654