Information needs and research priorities for fertility preservation in women with breast cancer: patients and experts’ perspectives

Abstract

Objective To identify the information needs and research priorities that women with breast cancer (BC), their families and BC experts perceive on the fertility preservation. Methods We conducted two Delphi‐based studies through three online rounds. The first was aimed to identify information and research needs; the second one to assess the importance of those needs and the third one to obtain consensus, defined as an interquartile range ≤2. Results The participation rate was 76.2% in study 1 and 53.7% in study 2. The most important information needs were the referral protocol, pregnancy options for women with BC, side effects of tamoxifen and menopause as a consequence of treatment. The most important research priorities were the participation of different health professionals to provide oncofertility information, referral protocols and efficacy and safety of FP options. Conclusion Information about fertility preservation in the context of BC and different ways to get pregnant, considering risks and benefits, has emerged as an unmet need for patients and careers. The need for a participatory and coordinated approach to the provision of information on oncofertility has been agreed. Other research needs are described in an attempt to focus future research in the most necessary areas.

Information needs and research priorities in long‐term survivorship of breast cancer: Patients and health professionals' perspectives

“…According to the results of Survey 2, health care professionals identified 106 topics for future research, but most had already been answered by available scientific evidence. Research about fertility preservation in the context of BC and different procedures to become pregnant, considering the risks and benefits, has emerged as a priority research area in the present study and in other studies about the subject (Brown et al, 2021;Hoffman et al, 2021;Thewes et al, 2005;Torres-Castaño et al, 2021).…”

“…In Canada, Public Health Ontario has compiled a list of research needs, counting on the participation of patients, based on the methodological framework described by Sibbald et al (2009). In Spain, http://www.pydesalud.com, supported by the Spanish Network for Research on Chronicity, Primary Care and Health Promotion (RICAPPS) funded by the Instituto de Salud Carlos III, performs qualitative research on experiences of patients with chronic diseases, together with the development of tools for shared decision‐making and the identification of research needs from patient and carer perspectives (Serrano‐Aguilar et al, 2009, 2015, 2016), some of which specifically focus on the experiences of women with BC in communication during the oncological treatment process (Abt Sacks et al, 2016) and about their needs for information and research priorities to preserve fertility (Torres‐Castaño et al, 2021). The most important women health‐related informational needs during the diagnosis and treatment of BC concern physical, emotional, social, and economic topics.…”

Shared decision-making in Spain in 2022: An updated revision of the current situation

“…Other examples of the use of more participatory and inclusive design methodologies, include studies aiming to identify patients' information needs, as well as research priorities from the perspective of patients, relatives or healthcare professionals [24][25][26]. Additionally, different initiatives have recently used co-creation strategies to promote patient empowerment among healthcare users with different health conditions [27][28][29][30].…”

Ovarian transposition in rectal cancer: uncertain benefit at a high price

“…Whilst there are limited data on the priorities of young patients with colorectal cancer, fertility preservation has been cited as one of the top five unmet needs for adolescent cancer patients and for patients undergoing treatment for breast cancer [11,12]. Ovarian transposition, however, is primarily an intervention to preserve hormonal function rather than to preserve fertility [13].…”