Toward theoretical understanding of the fertility preservation decision-making process: examining information processing among young women with cancer

Autor: Sara Lake, Susan J. Altfeld, Jennifer Hirshfeld-Cytron, Patricia E. Hershberger, Lorna Finnegan
Rok vydání: 2014
Předmět:
Zdroj: Research and theory for nursing practice. 27(4)
ISSN: 1541-6577
Popis: October 22, 2012 marked a new era for young women with cancer. Egg freezing, long considered an experimental procedure in the United States (US), moved from “experimental” to non-experimental and joined embryo freezing as an acceptable and recognized fertility preservation option available to postpubertal women diagnosed with cancer (American Society for Reproductive Medicine, 2012; Practice Committees of the American Society for Reproductive Medicine and the Society for Assisted Reproductive Technology, 2013). Although fertility preservation for postpubertal males has been successful and evolving since 1953 (Anger, Gilbert, & Goldstein, 2003; Bunge & Sherman, 1953), advances in female preservation have proven more difficult to achieve (Cobo & Diaz, 2011; Smith, Motta, & Serafini, 2011). In fact, it was only in 2006 that the American Society of Clinical Oncology (Lee et al., 2006) advised clinicians to inform patients of reproductive age about the potential loss of fertility associated with gonadotoxic cancer therapy, discuss basic questions about fertility preservation options, and refer interested patients to fertility preservation specialists. Fertility preservation has been recently defined by the National Center for Biotechnology Information at the US National Library of Medicine (i.e., PubMed) (2012) as, “A method of providing future reproductive opportunities before a medical treatment with known risk of loss of fertility. Typically reproductive organs or tissues (e.g., sperm, egg, embryos and ovarian or testicular tissues) are cryopreserved for future use before the medical treatment (e.g., chemotherapy, radiation) begins.” The advances in female fertility preservation to establish options such as egg and embryo freezing are groundbreaking and if available previously, may have altered the opportunity for biological motherhood for many of the estimated 7,196,020 female cancer survivors who are 20 years-of-age or greater in the US alone (Siegel et al., 2012). The decision whether to undergo fertility preservation should ideally take place before the onset of cancer therapy; therefore, there is an urgent need for research to explore and explicate how nurses, physicians, and other clinicians can best assist women in the decision-making process regarding these complex fertility preservation options (Canada & Schover, 2005; Lamar & DeCherney, 2009; Peate, Meiser, Hickey, & Friedlander, 2009; Quinn et al., 2010). At the same time, there is a growing awareness and call for incorporating theoretical understanding and insight into how to help patients make personally relevant decisions that involve risk and uncertainty (Bekker, 2009; Elwyn, Stiel, Durand, & Boivin, 2011). A critical component of assisting patients in the decision-making process is providing information about treatment options (International Patient Decision Aid Standards Collaboration, 2005). It has also been well documented that individuals diagnosed with cancer want and benefit from information, especially information related to treatment options (Chelf et al., 2001; O’Leary, Estabrooks, Olson, & Cumming, 2007; Skalla, Bakitas, Furstenberg, Ahles, & Henderson, 2004; Stephens, Osowski, Fidale, & Spagnoli, 2008). Yet, many cancer patients report that they have not received adequate information about treatments or are overwhelmed by information and have difficulty determining what is accurate and what is relevant to them (Rozmovits & Ziebland, 2004; Skalla et al., 2004). The information needs of young people with cancer and especially women may be even more acute. In a systematic review of 112 published articles to discern cancer patients’ information needs and sources from which they receive information, Rutten, Arora, Bakos, Aziz, and Rowland (2005) found that younger cancer patients tend to seek more information than older patients and the range of sources of information is also broader in younger patients. Rozmovits and Ziebland (2004) echoed these findings in their study examining the information needs of prostate and breast cancer patients and concluded that information support services often failed to meet the needs of young people with cancer and especially the needs of women. Research in the evolving area of fertility preservation for young women with cancer indicates that only 34%–72% of women diagnosed with breast cancer discuss fertility related issues with their physician or other clinicians (Duffy, Allen, & Clark, 2005; Partridge et al., 2004; Thewes et al., 2005). Many women have also reported to investigators that although clinicians discussed fertility issues, their concerns were inadequately addressed (Duffy et al., 2005; Partridge et al., 2004). In a study that preceded the 2006 recommendations by the American Society of Clinical Oncology (Lee et al.), Quinn and colleagues (2007) completed in-depth interviews with 16 oncologists and found that while most oncologists discuss potential fertility loss secondary to cancer treatment, few provide women with information about preserving fertility. About two years following the release of the 2006 recommendations, Quinn and colleagues (2009) queried oncologists in a US national survey and concluded that less than half of oncologists were routinely referring patients who had questions about fertility to a fertility preservation specialist. The need for knowledge and understanding about information processing surrounding fertility preservation for young women with cancer is not limited to the US. Young women with cancer in Australia also reported a lack of information and support for decisions surrounding fertility (Penrose, Beatty, Mattiske, & Koczwara, 2012) and Jukkala and colleagues (2010), in a sample comprised of young women from eight countries, found that most women self-identified as having limited knowledge about fertility preservation even though they were on average only 22 months postcancer diagnosis. Moreover, investigators in Australia found that among 111 young female breast cancer survivors all participants indicated that receiving information on fertility preservation options was important; 20% of the sample went on to indicate that fertility preservation information was very important and 63% indicated this information was extremely important (Peate et al., 2011). In Germany, Switzerland, and Austria a web-based survey is currently in progress to determine patient knowledge, attitudes, and intentions about fertility preservation among cancer patients (FertiPROTEKT, 2006). In addition, since 2007, the European Society of Human Reproduction and Embryology (2012) has convened a task force to address issues and concerns regarding fertility preservation in cancer patients. In response to the multiple urgent needs, efforts to inform clinicians and aid patients in the decision-making process are underway. For example, the sequence of women’s decision points surrounding fertility preservation in which clinicians can approach patients has been documented via a decision tree (Gardino, Jeruss, & Woodruff, 2010), and several decision support aids are in development (National Cancer Institute, 2011) or under evaluation (Meneses, McNees, Azuero, & Jukkala, 2010; Peate et al., 2012). Yet, there is little in-depth or theoretical understanding about information processing as it relates to young women’s decisions to accept or decline fertility preservation following a diagnosis of cancer. To address this gap, the purpose of this paper is to expand theoretical understanding of the decision-making process by examining aspects and insights related to information processing among a sample of young women diagnosed with cancer who have real-world experience in making a decision about fertility preservation.
Databáze: OpenAIRE
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