The need for a health information self-education tool for radical cystectomy patients emerged from a formative and multi-stakeholder design process to identify intervention priorities. After cataloging educational needs of patients, caregivers and clinicians, the authors convened four confirmatory focus groups attended by radial cystectomy patients and caregivers to review the content, structure and format of the tool in development. A survey gathered rankings of the content areas and the preferred format of the self-education tool. There were 100 patients/caregivers recently treated with radical cystectomy at Moffitt Cancer Center to participate, yielding 25 patients and 5 caregivers who attended one of four focus groups.
The median age was 68 years (range 38 – 93). Eight of the 25 patients (32%) reported readmission after cystectomy. Participants reported an average of 4.2 months to “feel normal” after surgery, most were dissatisfied with education prior to surgery, and most obtained information from former patients without the aid of any formal educational resource. Patients desired improved information about the surgery, risks and complications, and long-term functional and quality of life issues. Furthermore, discharge information was described as overwhelming. The authors subsequently constructed a prototype educational website in accordance with patients’ expressed preferences for self-navigable content, limited text, videos, pictures, vignettes and downloadable information.
The authors concluded that preoperative patient education about radical cystectomy is inadequate. The formative stakeholder engagement work and feedback from focus groups has guided development of a tool for radical cystectomy patients in the format of an interactive concept map. Future directions include testing the patient-centered self-education tool prospectively to explore impact on self-efficacy, knowledge, and other outcomes.
Presented by: Charles Peyton, Moffitt Cancer Center, Tampa, FL
Co-Authors: Carmit McMullen, Alison Firemark, Matthew Nielsen, Scott Gilbert
Written By: Zachary Klaassen, MD, Society of Urologic Oncology Fellow, University of Toronto, Princess Margaret Cancer Centre @zklaassen_md at the 18th Annual Meeting of the Society of Urologic Oncology, November 20-December 1, 2017 – Washington, DC