DECISION AIDS' EFFICACY TO SUPPORT WOMEN'S FERTILITY PRESERVATION CHOICES BEFORE CANCER TREATMENT: AN ENVIRONMENTAL SCAN

Purpose: To evaluate patient information and clinical guidelines developed for women making fertility preservation choices before cancer treatment. As some cancer treatments increase women’s chance of infertility, oncology and fertility services provide information preparing women for fertility preservation procedures. Women report current resources are not sufficient to support their fertility preservation decisions during their cancer care. 

Method(s): An environmental scan of open-access decision support resources carried out using systematic review methods (December 2015). Three data sources were searched: internet (Google): healthcare decision support repositories (Decision Aids Library Inventory; Trips; NHS Evidence; National Guidelines Clearinghouse; Clinical Trials); shared decision making experts (SHARED-L distribution list). Inclusion criteria were, information about: women receiving cancer treatment; consequences cancer treatment on fertility; fertility preservation options; statements supporting women’s choices. The International Patient Decision Aid Standards (IPDAS) criteria informed the data extraction sheet developed to elicit information about resources’ content. Data were evaluated critically against these components, assessing resources’ validity to support actively people’s decision making between options.

Result(s): Of the 116 patient decision aids and 42 clinical guidelines identified, 24 decision aids met the inclusion criteria. Resources varied in amount (2 – 90 pages) and type (pdf – App) of information. Most were rated as difficult to read (Flesch <60); few were endorsed independently (e.g. DALI, Crystal Mark). A third stated the resource’s purpose was to support women’s decision making; most aimed to inform and prepare women for fertility preservation and/or infertility procedures. Most resources provided questions for women to engage with health professionals rather than prompts and structures supporting deliberative thinking about which options fit best into their life now, and after cancer treatment (e.g. decision maps, parallel presentation options and attributes; risk figures, value clarification prompts). Most descriptions of cancer and infertility missed out information from one of the five schema people need when making sense of illness. Most resources met less than 50% of the IPDAS criteria.

Conclusion(s): Resources provided information about fertility preservation and infertility treatment options; about 20% adhered to IPDAS guidance and readability standards. Most resources were designed for women with breast cancer after referral to infertility services. A decision aid supporting women’s deliberation about fertility preservation, or not, when receiving treatment for any cancer is likely to meet UK and international service needs.