Protocol for the development and acceptability of a fertility-related decision aid for young women with breast cancer in Portugal

Abstract

IntroductionYoung patients with breast cancer may face impaired fertility due to cancer treatments, which often leads to complex fertility decisions. To aid fertility decision-making, it is crucial that women have access to high-quality information; however, their fertility information needs are often unmet. Decision aids (DAs) are educational materials to assist with decision-making, by addressing individual values and preferences. In oncofertility, DAs may constitute a valuable resource to help patients obtain information and make better informed decisions. This paper reports on the protocol of the development and transcreation of a fertility-related DA booklet to support young Portuguese patients with breast cancer, originally developed and validated for an Australian audience.Methods and analysisRecent literature on clinical guidelines will be reviewed. A summary of these guidelines will be created and will inform the first round of DAs revisions. A forward translation process will translate the DA from Australian English to Portuguese. A multidisciplinary Portuguese experts panel will revise and give feedback on the scientific and cultural aspects of the DA content for Portuguese audience. Next, a backward translation process will assess content equivalence between the original and the final adapted version. Finally, Learner Verification (LV) will be used in a qualitative study of young patients with breast cancer and their partners. Two focus groups with 6–10 participants each will be conducted with: (1) recently diagnosed young patients with breast cancer; (2) breast cancer survivors and (3) their partners. Results from the DA acceptability assessment will inform its final version. Data will be analysed using content analysis and constant comparison method to identify key themes/textual units related to LV.Ethics and disseminationEthical approval was granted by the Portuguese Institute of Oncology Porto. Results will be disseminated through peer-reviewed journals and presented at scientific meetings for academic and health professionals audiences.

Barriers to Oncofertility Care among Female Adolescent Cancer Patients in Canada

“…DAs are considered the gold standard in complicated health decisions [65]. Fertility DAs provide patients and parents with information and stepwise frameworks, and are available in online [66][67][68] or paper [69,70] formats. DAs often utilize value clarification exercises, where patients or parents evaluate which fertility outcomes are congruent with their own personal values.…”

A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype

“…Once completed, we hope that this DA for family building after cancer will be a complementary resource to the DAs and resources that exist for pretreatment fertility preservation [11,12]. We followed similar development procedures to those reported for other DAs in the literature, including adherence to IPDAS guidelines, review of previously published DAs, use of a multidisciplinary team approach, iterative design with feedback from target users, and digital platforms [53][54][55][56][57]. Fertility preservation DAs have been shown to be acceptable and beneficial to young adult female cancer survivors [53,55,57], suggesting the DA presented here may similarly support patients through the next steps of family building.…”

Women's fertility decision‐making with a diagnosis of breast cancer: A qualitative evidence synthesis

“…Attention on the onco‐fertility issues facing younger women with breast cancer has increased over the past decade (Jones et al, 2017; Oktay et al, 2018), with an increasing number of countries internationally offering onco‐fertility decision aids (Benoit et al, 2020; Ehrbar et al, 2019; Gonçalves et al, 2019; Speller, Metcalfe, et al, 2019). Freezing embryos or oocytes during an in vitro fertilization (IVF) procedure for later use (Peccatori et al, 2013) and cryopreservation are recommended approaches for fertility preservation in cancer (Oktay et al, 2018; The practice committee of the American Society for Reproductive Medicine, 2013).…”