Abstract
BackgroundThe pregnancy rate after cancer treatment for female survivors is lower than that of the general population. Future infertility is a significant concern for patients with breast cancer and is associated with a poor quality of life. Reproductive-age patients with breast cancer have safe options when choosing a type of fertility preservation method to be applied. Better information and support resources aimed at women to support their decision making are needed.ObjectiveThe objective of this study was to develop a web-based shared decision-making tool for helping patients with breast cancer make decisions on fertility preservation.MethodsWe used the action research cycle of observing, reflecting, planning, and acting to develop a web-based shared decision-making tool. The following four phrases were applied: (1) observe and reflect—collect and analyze the decision-making experiences of patients and health care providers; (2) reflect and plan—apply the initial results to create a paper design and modify the content; (3) plan and act—brainstorm about the web pages and modify the content; (4) act and observe—evaluate the effectiveness and refine the website’s shared decision-making tool. Interviews, group meetings, and constant dialogue were conducted between the various participants at each step. Effectiveness was evaluated using the Preparation for Decision-Making scale.ResultsFive major parts were developed with the use of the action research approach. The Introduction (part 1) describes the severity of cancer treatment and infertility. Options (part 2) provides the knowledge of fertility preservation. The shared decision-making tool was designed as a step-by-step process (part 3) that involves the comparison of options, patient values, and preferences; their knowledge regarding infertility and options; and reaching a collective decision. Resources (part 4) provides information on the hospitals that provide such services, and References (part 5) lists all the literature cited in the website. The results show the web-based shared decision-making meets both patients’ and health providers’ needs and helps reproductive-age patients with breast cancer make decisions about fertility preservation.ConclusionsWe have created the first web-based shared decision-making tool for making fertility preservation decisions in Taiwan. We believe female patients of reproductive age will find the tool useful and its use will become widespread, which should increase patient autonomy and improve communication about fertility preservation with clinicians.Trial RegistrationClinicaltrials.gov NCT04602910; https://clinicaltrials.gov/ct2/show/NCT04602910
Highlights
Breast cancer is a common oncologic disease worldwide
If the score was less than 3, we modified the website content based on the user feedback from patients and health care providers
All project members focused the information they provided on the website on cancer treatment, infertility, and the types of fertility preservation necessary before embarking on the shared decision making (SDM) steps
Summary
Breast cancer is a common oncologic disease worldwide. In Taiwan, breast cancer has the highest incidence of all cancers in the female population, and the incidence of breast cancer in women of childbearing age is increasing [1]. Fertility and infertility are important concerns among reproductive-age women with breast cancer [4,5]. Infertility following cancer treatment has a recognized negative impact on the quality of life [6]. Ovarian stimulation in patients with early-stage breast cancer is safe in the long term [3]. If age, reproductive function, and the cancer stage allow, patients can choose their preferred fertility preservation method. The pregnancy rate after cancer treatment for female survivors is lower than that of the general population. Future infertility is a significant concern for patients with breast cancer and is associated with a poor quality of life. Reproductive-age patients with breast cancer have safe options when choosing a type of fertility preservation method to be applied. Better information and support resources aimed at women to support their decision making are needed
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