Abstract
Infertility is a potential side effect of cancer chemotherapy. As the number of adolescent and young adult (AYA)-aged survivors increases, future fertility becomes an important issue. However, many patients are not adequately informed and oncologists point the lack of information as a barrier to discussion. Our aim was to produce information materials tailored to oncologists' needs to promote and support discussion on infertility risk and fertility preservation (FP) with AYA-aged patients. After literature review, information materials were successfully developed and are currently being distributed to healthcare professionals in Portugal, with the collaboration of several national organizations. These information materials will contribute to shared informed decisions regarding FP in AYA-aged patients.
Introduction
I
According to recommendations of international organizations on cancer care, namely the European Society of Medical Oncology (ESMO) 8 and the American Society of Clinical Oncology (ASCO), 9 healthcare providers should address infertility risks with all cancer patients treated during their reproductive years. Moreover, they must be prepared to discuss FP options or to refer potential patients to reproductive medicine specialists. Despite the above recommendations, several international studies indicate that professionals caring for cancer patients do not address these issues and a considerable proportion of AYA-aged patients is not informed on the possibilities regarding FP.10–13 The main reasons reported by health professionals were the lack of knowledge, access to reproduction specialists, and information on FP options, especially those remaining experimental. Patient-related factors such as bad prognosis, terminal disease, or the need to postpone treatments were also pointed to contribute. 11
In Portugal, the oncofertility area is taking its first steps. Nevertheless, a variety of techniques for male and female FP are available at a few specialized institutions of the National Healthcare System, including the Centro para a Preservação da Fertilidade (Centre for Fertility Preservation) of CHUC, EPE, in Coimbra.
Recently, the Sociedade Portuguesa de Medicina Reprodutiva (SPMR; Portuguese Society for Reproductive Medicine) endorsed the organization of the first and second Portuguese Oncofertility Meetings, with the purpose of implementing an integrated national practice concerning FP for cancer patients. In this process, the Centro para a Preservação da Fertilidade (Center for Fertility Preservation) of CHUC, EPE, in Coimbra, has been at the front line, actively promoting awareness of this new field and disseminating information regarding infertility risks and FP options both to AYA-aged patients and healthcare professionals. One specific objective of this information program was the production of information materials for Portuguese cancer care professionals, tailored to the respective reported information needs, to promote and support discussion with AYA-aged patients on the topics of infertility risks and FP.
Methods
Assessment of information needs
To identify worldwide reported information needs, a literature search was conducted on Medline, through PubMed, combining the following MeSH terms: Neoplasms, Antineoplastic Agents/adverse effects, Fertility/drug effects, Fertility Preservation, Sperm banks, Health Knowledge, Practice, and Attitude of Health Personnel. Quantitative studies reporting oncologists' information needs or gaps in knowledge concerning infertility risks and FP or barriers to FP implementation were selected and critically evaluated.
Production of information
Information contents were selected to accomplish two main objectives: (1) to alert for the need to discuss infertility risks with patients and to help healthcare professionals estimating those risks and (2) to promote knowledge on the available male and female FP options. The latest published evidence on infertility risks associated with cancer treatments was identified through literature search, namely regarding mechanisms and adverse effects of cancer treatments on fertility, factors associated with infertility risk, and tools available for risk calculation. Regarding FP techniques, current evidence-based information on clinical indications, time requisites, success rates, risks, and advantages/disadvantages of each FP technique was gathered, also by literature search. Published clinical guidelines on FP in cancer patients were also identified.
A main booklet directed to clinicians working with cancer patients with comprehensive contents was prepared. This professional group presents the greatest information needs as they have the responsibility to initiate FP discussion with patients and referencing them to FP specialists. A booklet with summarized contents was also produced and intended to inform other healthcare professionals working in the cancer setting. This resumed booklet is also intended for primary care professionals, who many times make the first contact with AYA cancer patients, so that they can promote awareness of the FP subject.
Results
Information needs
Twelve (12) published articles were selected and analyzed.13–24 Data on methods and relevant results (reported information needs, gaps in knowledge, or barriers to FP discussion) were collected from each individual article (Table 1).
FP, fertility preservation.
Information contents
All the identified information topics were included in the main booklet named “Oncofertility. Fertility Preservation in Cancer Patients.” Information contents were organized in four main sections.
Section 1. Why the need for FP in cancer patients?
In this first section, the relevance of oncofertility in the present context is discussed. Moreover, information on the topics of fertility outcomes of cancer survivors, evaluation of reproductive potential and (in)fertility markers, risk factors for infertility in cancer patients, and infertility risks associated both with cancer and cancer treatments is also provided.
Section 2. How can cancer patients' fertility be preserved?
This section includes the following subsections: Preserving fertility: which patients and when; Male FP techniques; Female FP techniques (organized according to their classification as established and experimental); and Other FP procedures (ovarian transposition, GnRH agonist administration). For each FP technique, information is provided regarding procedure, classification as established/experimental, indications (for whom and when), time requisites, success rates, risks for man/woman and offspring, and ideal time for conception/pregnancy, using the cryopreserved cells/tissue and costs.
Section 3. Questions and answers
For the most frequently reported topics, information was reinforced in a series of questions and answers (total of 15). Some examples are FP in estrogen-positive breast cancer (Which FP techniques are available for hormone-sensitive tumors?), FP in prepubertal patients (Which FP techniques are available for prepubertal patients?), time requisites for FP (Is there a need to postpone cancer treatments to allow for FP procedures in a cancer patient?), available guidelines (Are there national or international guidelines on FP in cancer patients?), patient referral (What is the procedure for referencing patients to an FP consultation?), or established versus experimental techniques (Which FP techniques are acknowledged as established medical practice?).
Section 4. Information tools
A variety of practical tools were developed and included in this last section, including a compilation of electronic tools to estimate infertility risks, the infertility risk tables published by ASCO in 2013 (translated and adapted to Portuguese), a list of published international guidelines regarding FP in oncology, and a comparative table of the female FP techniques. In addition, a list of recommended e-books and review articles was prepared.
The smaller booklet called “Fertility Preservation in Cancer Patients” presents a similar general organization, but summarized contents.
Information dissemination
The materials produced are being distributed with the collaboration of the Liga Portuguesa contra o Cancro (LPCC; Portuguese League Against Cancer), a nonprofit cancer patients organization, the SPMR (Portuguese Society of Reproductive Medicine), the Sociedade Portuguesa de Oncologia (SPO; Portuguese Society of Oncology), and the Ordem dos Farmacêuticos (OF; Portuguese Pharmaceutical Society). The LPCC published the summarized booklet and is disseminating both materials to primary care and cancer care health professionals through its website and promotion campaigns. This smaller booklet is also being distributed to the Portuguese hospital and community pharmacists through the efforts of the OF. The comprehensive information booklet was printed with the support of the SPMR and is being distributed in cancer care institutions and to oncologists with the collaboration of the SPO. Moreover, all information contents of the produced materials are available through the website of the Centre for Fertility Preservation of CHUC, EPE (www.centropreservacaofertilidade.pt), in Portuguese.
Discussion
It is important to note that information materials directed to AYA-aged cancer patients were also developed in the context of this program, including decision aids to support the decision of preserving fertility (or not) and the choice of the FP technique (results to publish). Moreover, we would like to highlight the multidisciplinary context in which this project has been out, involving oncologists, reproductive medicine physicians, pharmacists, psychologists, and professional societies from the mentioned areas. This cooperation will certainly contribute to a wider dissemination of the developed information materials to various intervenients in the process of cancer care and to a more effective clinical implementation.
Although the present information materials have been developed based on the internationally reported needs, the identified information topics are in accordance with the results from a locally applied questionnaire to a sample of 37 oncologists from two hospitals in the central region of Portugal (unpublished results). In this survey, topics regarding types of cancer treatments associated with greater infertility risk, interference of FP techniques with cancer, and the available FP techniques were considered the most important information needs.
The developed information materials will support the role of cancer care professionals as patients' educators, increasing their participation in clinical decisions. Additionally, health professionals working in primary care settings can significantly raise awareness of this relevant subject as they are in a privileged position to disseminate information to the general population.
The next step will be to disseminate these materials to other Portuguese-language countries and translation to English and French. Moreover, it is our intention to perform, in cooperation with the SPO, an evaluation study of cancer care clinicians' perceptions on the relevance, reliability, and completeness of contents and on the usefulness of this information for their clinical practice.
Conclusions
The opportune information of AYA-aged cancer patients on their risk of infertility and the possibilities concerning FP is recognized as a highly relevant issue in the context of cancer survival quality of life. Our work confirms the significant information needs of oncologists on these subjects and, by fulfilling those needs, contributes to timely, shared, and informed clinical decisions on FP.
Footnotes
Acknowledgments
This work was supported by a research grant from the Liga Portuguesa contra o Cancro (Grant LPCC/Celgene 2012). We want to deeply thank Professor Paula Fresco PharmD, PhD, for her contributions in revising this article for English spelling and grammar.
Author Disclosure Statement
No competing financial interests exist.