Communicating the External Beam Radiotherapy Experience (CEBRE) Discussion Guides: Real World Implementation and Evaluation

Abstract

Communicating about the radiotherapy treatment process can be difficult for patients and healthcare professionals. The "Communicating the External Beam Radiotherapy Experience" (CEBRE) and Communicating the Gynecologic Brachytherapy Experience (CoGBE) discussion guides use graphic narrative to explain external beam radiotherapy and gynecologic high-dose rate brachytherapy, respectively. The CEBRE, CoGBE, and CEBRE en Español guides have been available for free download since 10/2018, 6/2020, and 8/2021, respectively. This study aims to characterize how the guides are being implemented and used in practice. Global downloads of the CEBRE, CoGBE, and CEBRE en Español guides were analyzed. Email addresses submitted at the time of download were used to contact study subjects. Duplicate emails, fake addresses, and expired emails were removed resulting in 500 individuals being invited to participate in the survey. A data collection web application survey was distributed on 1/27/23. Two reminders were sent prior to the survey closing on 2/13/23. The survey addressed how physicians or other radiotherapy team members use the CEBRE guides, where they are used, and how the guides can be improved. Likert-type data (1 = strongly disagree, 5 = strongly agree) are reported as median [interquartile range]. As of 10/16/22, the CEBRE guides (English) had been downloaded 602 times, CoGBE 86 times, and CEBRE en Español 63 times. 42/500 individuals responded to the survey for an 8% response rate. 40/42 (95%) of participants were healthcare providers with 35/40 (87.5%) radiation oncologists. 16/40 (40%) have used the CEBRE guides in some way. 6/16 (37.5%) "always use," 2/16 (12.5%) "often use," and 3/16 (18.8%) "sometimes use" the guides during consultation. 8/16 (50%) report using the guides for education of medical students, residents, and fellows. The 16 respondents that use the guides felt the guides were useful overall (5[5-5]), felt "very confident" using the guides (4.5[4-5]), and felt the guides "help patients prepare for their treatment" (5[4-5]). 40 respondents provided suggestions on additional language translations with 19/40 (48%) recommending translation into Mandarin, 6/40 (15%) into Cantonese, Portuguese, French and Arabic, and 5/40 (12.5%) into Haitian, Hindi, and Vietnamese. The majority of respondents did not use the CEBRE guides which may be due to difficulty with implementation. However, respondents who use the guides are confident using them and rate them as useful for patients. These data, although limited by the low response rate, suggest that the CEBRE guides have accomplished the goal of facilitating patient-physician conversations. Moreover, there is an interest in translating the guides into additional languages other than Spanish. Due to the low response rate, definitive conclusions cannot be made from these data. Therefore, further research such as interviews and focus groups may be beneficial.