Implementing a Systematic Approach to Meeting Patients' Cancer and Fertility Needs: A Review of the Fertile Hope Centers of Excellence Program

Memorial Sloan-Kettering Cancer Center
Journal of Oncology Practice 09/2012; 8(5):303-8. DOI: 10.1200/JOP.2011.000452
Source: PubMed


National guidelines recommend patients with cancer of reproductive age be informed of their risk for infertility resulting from cancer treatment. Despite existing technologies to preserve fertility, many patients report not receiving timely information about fertility risk, and oncology providers report multiple barriers to discussing or referring patients on this topic.
Nine cancer centers have been recognized as Fertile Hope Centers of Excellence, a designation awarded to cancer centers with an institutionalized approach to addressing fertility issues. Individual semistructured interviews were conducted with each of these centers to identify strengths of and challenges to their approaches.
All institutions had procedures for the provision of topical professional and patient education and for notification of patients. Notification methods varied widely, from use of customized consent forms to highly automated electronic alerts for providers. Referral routines and enactment of institutional policies also differed. Key components of successful programs emerged, including the value of internal champions, affiliation with complementary programs, and resource sharing.
The programs described provide examples of systems that can be assembled in different types of clinical settings, depending on the availability of resources and infrastructure. As institutions develop programs, metrics to evaluate notification systems, in particular, as well as the supportive program components, should be used so identification of best practices can continue. Widespread adoption of programs that incorporate the baseline elements identified will not only comply with national guidelines but also address patients' reproductive needs and fundamentally affect future quality of life.

Download full-text


Available from: Sarah Arvey
  • Source

    Preview · Article · Aug 2013 · Journal of Oncology Practice
  • [Show abstract] [Hide abstract]
    ABSTRACT: NCI-designated comprehensive cancer centers (CCCs) set the standard for providing exemplary patient care. Quality cancer care includes discussions about fertility and referrals to fertility specialists for patients at risk for sterility. This study sought to determine what fertility preservation (FP) resources are available in CCCs and how well those are integrated into patient care. Leaders at each CCC received a letter requesting a short telephone interview with individuals who could provide information about the institution's FP resources. A semi-structured interview guide was used and responses were audio-recorded. Data were analyzed using content and thematic analysis. Interviews were conducted with 30 of the 39 CCCs that see adult patients (77%). The remaining institutions included 4 nonresponders, 3 that referred the interviewers to childhood cancer survivorship clinics, 1 that refused, and 1 that could not identify any FP resources. Participants were primarily affiliated with reproductive endocrinology (n=15) or hematology/oncology divisions (n=10). Institutional policies regarding consistent provision of FP information were rare (n=4), although most sites (n=20) either had some services on-site or had referral programs (n=8). However, only 13 had some experimental services, such as ovarian tissue cryopreservation. Respondents reported barriers to provision of FP, including oncologists' identification of patients at risk, low referral rates, and perceptions of patient prognosis. Only 8 (27%) sites had staff with time dedicated to FP. CCCs vary widely in implementing FP-recommended practice to their patients. CCCs are positioned to provide exemplary oncofertility care, but most need to better integrate FP information and referral into practice.
    No preview · Article · Dec 2013 · Journal of the National Comprehensive Cancer Network: JNCCN
  • [Show abstract] [Hide abstract]
    ABSTRACT: The purpose of this study is to describe a model of care for fertility preservation (FP) that integrates clinical care and research through the establishment of the Colorado Oncofertility Program's (COP) patient registry. To integrate research and clinical care, the COP developed a multidisciplinary organizational structure and established a prospective registry of demographic information and clinical data of patients who agree to participate in future studies. The patient registry allows for the integration of clinical care and research as well as streamlined data collection. Since the program launch in January 2012, over 285 patients have been evaluated and >95 % of approached patients have agreed to participate in the registry. Data collected are used for research, systematic program evaluation, and utilization of services. As one of the fastest growing oncofertility programs in the country, there is great potential for the COP's registry to contribute to expanding the limited body of literature on the late effects of cancer treatment on fertility and reproductive health in the adolescent and young adult (AYA) oncology population. With the use of web-based bioinformatics, objective data are captured for clinical care, future studies, program evaluation, and quality assurance, without compromising patient autonomy, privacy, and confidentiality or the commitment to personalized care.
    No preview · Article · May 2014 · Journal of Cancer Survivorship
Show more