Are publicly available internet resources enabling women to make informed fertility preservation decisions before starting cancer treatment: an environmental scan?

Providing accurate patient information is fundamental to health services worldwide [1]. Since the 1940s, social science research has informed guidance to enhance text readability [2, 3] and health communications [4, 5]. National and academic organisations provide best practice guidance [6] for patient-focused intervention development and evaluation [7, 8]. Research indicates patient resources informed by these standards enhance health literacy and patient benefits [9]. A challenge for service delivery is to support patient-focused communications about complex health problems; most guidance support one-off decisions about a health problem in a single pathway of care [10].

An iatrogenic consequence of cancer treatment is an increased chance of impaired fertility; treatments can permanently damage the endocrine function and/or reproductive systems needed to fall pregnant or carry a baby to term [11]. Oncologists deliver care to minimise these fertility-related effects using minimally gonadotoxic therapies [12] and/or fertility sparing procedures (e.g. trachelectomy, ovarian transpositioning, shielding) [13, 14]. For some women with impaired fertility after cancer treatment, infertility treatments are offered [15]. Having fertility preservation procedures before cancer treatment may increase the likelihood of women having genetically related children in the future, but can delay the start of cancer treatment by a few weeks. Fertility services offer the following preservation procedures: embryo cryopreservation, oocyte cryopreservation, and ovarian tissue cryopreservation [16, 17].

Integrating relevant fertility preservation information into cancer pathways is essential for women to make informed decisions about whether to undergo fertility preservation, and/or which procedures to choose [15, 18‐25]. Receiving accurate and timely information is associated with reported better quality of life and reduced decisional regret, post cancer treatment [22, 26‐29]. However, women’s recall of discussions with health professionals and support about infertility-related side-effects of cancer treatment is low [18, 30, 31]; findings indicate variation in the timing, content, utility and quantity of information about fertility preservation provided by cancer services [18, 31‐33].

Increasingly the internet is accessed for health information [34‐38], and people find resources from stakeholders independent of healthcare services (e.g. public, professionals, charities, advocacy groups, product advertisers, unregulated businesses) and in varied formats (e.g. audio, video, text). These resources may provide accurate information to support patient and carer health literacy, or they may be misleading and difficult to understand in the context of a person’s life, experience and illness. It is unclear if and how systematically best practice guidance are used to inform publically available resources [39, 40]. This paper investigates what publically available resources are available to women about fertility preservation choices before starting their cancer treatment, and if they are sufficient to enable informed decision making.

We carried out a survey of publically available patient information and guideline resources to support women diagnosed with cancer making fertility preservation choices before treatment. We employed an environmental scan method used in applied health research for systematic analysis of Google search engine, targeted website searches and contacting experts [41‐44]. We used this approach to search for resources freely available to any woman or health professional [34‐38, 44]; internet searches can be more effective at identifying reports [42] and informal material relevant to the topic than academic or organisational databases [45, 46].

We followed the PRISMA reporting guidelines for best practice in reporting systematic reviews of secondary data synthesis [47]. These guidelines provide steps to encourage methodological rigour around the search, inclusion criteria, extraction and synthesis of findings. The target for this environmental scan is a resource (leaflet or guideline) rather than an empirical study; the quality of the target is judged against criteria known to boost reasoning rather than those known to enhance methodological rigour. A data extraction sheet was developed to elicit systematically the key characteristics and content from each resource, which are described in tables and synthesised within the results section.

Shown in Fig. 1, the search yielded 147 unique records eligible for assessment (n = 116 e-resources and n = 31 guidelines). Following screening, none of the 31 guidelines met the scan’s inclusion criteria (Table 1); although all guidelines make links between the consequences of cancer treatment and fertility problems, only 7 highlight guidance around availability of fertility preservation treatments, only 5 made links between cancer and fertility management pathways for women, and none provided guidance for professionals on how to support women’s decision making about fertility preservation options in the context of their cancer care.

Following screening, 24 patient resources met the scan’s inclusion criteria (Table 2). Most resources were suitable for women with any cancer type (n = 16), and most were designed for adults (n = 16). Resources were published between 2005 and 2017, all but one (SN22) in English, one (SN24) was judged as fairly easy to read, and one (SN22) was internet-adapted by using an interactive web-based platform (Table 2). All resources stated their publisher, thirteen described the development team, ten included references of the evidence-base informing the resource content, four stated they were endorsed by a third party, three published peer-reviewed papers demonstrating the resource’s development and/or evaluation, and two were located on the publicly available DALI (Table 3).

The search strategies identified 4851 cancer and fertility resources (Fig. 1). It took six weeks of systematic analysis to identify those integrating fertility preservation options within the cancer care pathway. Those meeting the scan’s criteria were predominantly information resources for women with cancer, raising awareness of fertility preservation and informing about infertility treatment options. Details describing the two related health problems, cancer and fertility problems, varied across resources. Three resources met the minimum criteria for recognition a patient decision aid [7, 9]; all three were developed and evaluated within research projects. Six used components and structures known to help people think actively about treatment options in accordance with their own values (Tables 4 and 7). No clinical guidelines enabled cancer professionals to prepare women for fertility preservation decisions and/or service referral; guidance was to read quality standards and/or clinical guidelines for treating fertility problems [15, 19]. As health professionals are not provided with guidance on enabling fertility preservation decisions in the context of cancer rather than infertility treatment, and relevant patient information is not easily accessible, these results explain in part why women with cancer feel simultaneously unsupported and overwhelmed by information at this time-pressured point in their treatment management [18, 22, 28, 29, 31, 73].

Using the environmental scan method provided a rigorous way to identify fertility preservation resources [42, 74]. Our data extraction sheet enabled us to critique resources systematically against established quality standards for written information [2, 4, 8, 69, 70]. However, there are limitations to using these type of web-based methods that may impact on our findings. Retrieving all resources is difficult due to the volume of material available on the internet [42, 46] and the lack of archiving and differing terminology used by developers [42]. Website content and location can change over time [75] and Google search algorithms and personalisation features linked to geographical location and previous search history all influence the results retrieved [42, 46, 75]. Ideally more than one search engine should be searched as they use different algorithms affecting relevance rankings and subsequent resource retrieval [76], patients also use different browsers or search engines. Best practice guidance for internet searches is developing [41], conducting an environmental scan using three complementary search strategies and repeating the Google search a year later from a different organisation should help to minimise the risk of missing key resources and address some of the bias in our search methods [42, 44, 74].

From our synthesis and critical evaluation of resources, we identified components likely to support proactively women’s health literacy and reasoning in decisions which cross medical specialty. First, explicit labelling linking the current illness with the future health problem (e.g. cancer-related fertility problem) helps establish causality between the current treatment and its iatrogenic consequence. Second, including details describing the future health across all illness representation dimensions (label/ symptoms, cause, time-line, consequences, cure/control) to enable women to have a coherent understanding of the short and long-term cancer-related fertility problems arising. Third, describing the fertility preservation decisions, and presenting all options with equivalent and balanced information, to enable stakeholders to focus on details relevant for women having cancer treatment. Fourth, signposting to other fertility-related choices within the cancer treatment trajectory raises awareness for women’s involvement at the right time in the cancer pathway [48] (Fig. 2). Fifth, describe risk figures and elicit preferences about the fertility preservation options to focus the discussion on information relevant to the context of starting, and minimising the consequences of, cancer treatment. Several resources encouraged women to rate their preferences for in-vitro fertilisation, surrogacy, adoption and fostering, i.e. options for women receiving treatment for fertility problems. People’s’ preferences are labile [77], and eliciting women’s values towards children, life-partners, and infertility treatments before they have a fertility problem, and whilst they are ill with cancer, may have limited value to making a decision about fertility preservation when being treated for cancer.

Achieving patient-centred integrated cancer care requires effective communication between patients and professionals [23, 68, 78]. Current clinical guidelines, patient resources, and patient decision aid frameworks provide little guidance enabling services to provide standardised information supporting cross-specialty decisions about health options. In consequence, there is variation in what information women receive within cancer services about fertility preservation, and can access from web-sites. We suggest components based on our study’s synthesis and critical evaluation can be used in resource development guidance to inform the content and structure of patient resources, clinical guidelines and shared decision making training to support more effectively women making fertility preservation decisions before starting their cancer treatment. Providing an infrastructure to ensure adoption and maintenance of rigorously developed and evaluated patient decision aids in relevant repositories is likely to increase women’ access to appropriate resources [79]. As is raising awareness and skills of utilising social science evidence when developing and designing patient information and professional guidelines to support people making healthcare decisions.