Fertility- and early menopause related information needs of young breast cancer survivors

Abstract

Abstract BackgroundApproximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finished treatment. Counseling about the risk of infertility prior to cancer treatment has been proven to improve quality of life after cancer treatment. As a result of this, guidelines focus on informing women on this topic prior to treatment. However, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual. Therefore, the aim of this study was to identify the fertility- and early menopause related information needs of young breast cancer survivors and to design, develop and implement online information material. MethodsA qualitative study consisting of four phases was performed: identification of information needs through semi-structured interviews from a professional perspective (1) and a patient perspective (2). Exploration of stakeholders perspective regarding development and implementation of online information material (3) and development and implementation of the information material (4).ResultsProfessionals indicate that there are no guidelines regarding the provision of fertility related information during cancer survivorship. Survivors report unmet information needs. Most important are a) fertility preservation options, b) the risk of menopause or infertility, and c) long term consequences of early menopause. A wide range of stakeholders involved in breast cancer care were interviewed. Based on their proposed design the information material was implemented on a nationwide website aiming at informing and supporting cancer patients. Conclusions Fertility- and early menopause related information needs of young breast cancer survivors and their professionals were identified. Information material has been designed, developed en nationally implemented. This way, professionals in providing breast cancer care are accommodated with an information tool that helps them meet the information needs and preferences of their patients.