Edited by: Tom Kelsey, University of St. Andrews, United Kingdom
Reviewed by: Francesco Lotti, University of Florence, Italy; Settimio D'Andrea, University of L'Aquila, Italy
This article was submitted to Reproduction, a section of the journal Frontiers in Endocrinology
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Based on the Global Burden of Disease study, cancer incidence rate continues to increase in the world including Asian countries (
For adult patients with cancer, fertility preservation treatments have been established to improve quality of life for cancer survivors. In 2006, the “Oncofertility consortium” and “FertiPROTEKT,” which are representative associations to promote FP for young cancer patients, were established (
Based on the latest guideline that was updated by the American Society of Clinical Oncology (ASCO), only oocyte and embryo cryopreservation is endorsed as an “established method” for fertility preservation for female patients who face a threat to their own fertility due to cancer treatment (
On November 2018, a survey was sent to country representatives of ASFP (Australia, China, Hong Kong, India, Indonesia, Japan, Korea, Philippines, Taiwan, Thailand, Vietnam, Pakistan, Singapore, Turkey) to collect information about the current status of FP services for child patients and the barriers that inhibit promoting this treatment. The participating countries gross national income per capita is very different (five high income countries, three upper-middle income countries, five lower income countries, and one with no data). The survey was approved by the institutional review board of our institution with revisions in keeping with the Declaration of Helsinki. The final version was sent by email to 14 contacts of the ASFP.
Potential survey participants were identified from existing members of the ASFP and international experts in the field. Potential participants received an email with an invitation to participate in the survey. Following the initial email, each participant received two reminders, one on November 1, 2018 and one on November 15, 2018, in order to maximize the number of responses.
Surveys were excluded from the analysis if participants failed to provide contact or identification information, if the survey was left blank, or if duplicate responses were submitted.
Survey participants were asked a total of 12 questions about the following areas: organization to promote FP treatment, patient access to medical professionals, current status of FP for adult and child patients, barriers that inhibit promotion of FP for C-A patients, and systems for providing information about FP for child patients. Three questions were dichotomous scaled questions (yes/no) with space for providing open-ended comments. Three questions were multiple-choice format, where only one answer could be selected. Four questions were multiple response questions, where participants could select one or more answers. One question was for free descriptive answer, and one was defining the priority order.
Survey responses were exported to Microsoft Excel. The dichotomous and multiple response questions were coded with numerical values to facilitate statistical analysis.
The present study was approved by the IRB of St. Marianna University (approval No. 4191, UMIN000035723). This survey is questionnaire survey targeted to medical professionals (representatives of society). On the explanation of this survey, we had written about consent to participate this survey at the front of questionnaires. We told them to reply when they could agree with participating this survey as participants.
From the 14 countries, 11 country representatives replied to the survey. Of the 11 countries, five had organizations or academic societies to promote FP, and three countries (Australia, Japan, and Korea) had organizations or academic societies that are specialized for FP in the true sense, whereas two (China and Indonesia) had a committee or branch society of a large academic society in the area of reproductive medicine or maternal-child health medicine. Two countries (Hong Kong and Philippines) are planning to establish organizations or academic societies specialized for FP. Although most countries do not have aid funds or insurance for FP, only Australia has a registration system for FP which requires individual patient consent and partial financial assistance or insurance system (Medicare) covering extensive FP treatment [embryo cryopreservation (EC), OC, consultation, ovarian transposition, sperm cryopreservation (SC)]. Also, Korea has partial funds for FP treatment (EC only).
Organizations to promote FP, patient access to medical professionals, and current status of FP for adult patients in Asian countries.
Specialized organization for FP | Yes | Yes | No (in planning) | No | Yes | Yes | Yes | No (in planning) | No | No | No | |
Name of the organization | FUTuRE Fertility | Chinese Maternal and Child Health Association | (Hong Kong Society of Reproductive Medicine) | FPSI (Fertility Preservation Society of India) | Indonesian Association for IVF | JSFP (Japan Society for Fertility Preservation) | KSFP (Korea Society for Fertility Preservation) | PSFP (Philippine Society of Fertility Preservation) | – | – | – | |
Aid fund or insurance for FP | Yes (several) | No | No (in planning) | No | No | No (in planning) | Yes (EC only) | No | No | No | No | |
FP for female | EC | Yes (100–199) | Yes (>200) | Yes (1–49) | Yes (>200) | Yes (1–49) | Yes (100–199) | Yes (1–49) | Yes (6) | Yes (1–49) | Yes (1–49) | Yes (1–49) |
OC | Yes (100–199) | Yes (>200) | Yes (1–49) | Yes (>200) | Yes (1–49) | Yes (100–199) | Yes (1–49) | Yes (6) | Yes (1–49) | Yes (1–49) | Yes (1–49) | |
OTC | Yes (10) | Yes (1–49) | No | Yes (3) | Yes (1–49) | Yes (38) | Yes (1–49) | Yes (1) | Yes (1–49) | Yes (1–49) | No | |
GnRHa | Yes (unknown) | Yes (>200) | Yes (rare) (1–49) | Yes (>200) | Yes (1–49) | Yes (not standard) | Yes (1–49) | Yes (6) | Yes (1–49) | Yes (1–49) | No | |
FP for male | SC | Yes (>200) | Yes (1–49) | Yes (1–49) | Yes (>200) | Yes (1–49) | Yesa (around 100) | Yes (1–49) | Yes (6) | Yes (1–49) | Yes (1–49) | Yes (1–49) |
TTC | Yes (1) | Yes (1–49) | No | Yes (>200) | Yes (1–49) | Yes (rare) | No | No | Yes (1–49) | No | No |
In all countries that replied to the survey, the patients can receive EC, OC, and SC as FP. Compared with OTC, TTC is uncommon FP treatment because of its still extremely experimental status. Therefore, even Australia, which is an advanced country for FP, has only one institution that has ethics approval for TTC although TESE can be done in post-pubertal patients in a number of centers if required.
All of Asian countries have experience of FP for C-A patients. However, in most countries, the opportunities for FP for C-A patients are limited compared with FP for adult patients, because all participants (except for Indonesia) chose “not so often” regarding opportunities for FP for C-A patients. The main reasons were “not enough information for physicians, oncologists, patients and family” and “lack of public awareness.” Also, the numbers of facilities that can provide FP treatment for C-A patients are limited. Especially, in Australia, the facilities that can do OTC and TTC are strictly consolidated.
Current status of FP for C-A patients in Asian countries.
Experience with FP for C-A patients | Not very often | Not very often | Not very often | Not very often | Most of the time | Some of the time | Some of the time | Not very often | Not very often | Not very often | Not very often | ||
Reason or comments | Routinely only two centers done | Not enough information | Not enough information, lack of oncology support | Oncologist and parents are reluctant to provide FP | Two centers can provide FP | Not enough information, patient's disease | Lack of information to physicians, parents, patients | Fertility-sparing surgery and radiation shielding are done | Lack of public awareness | Parents concerned about cancer treatment more than FP | Lack of information, FP for C-A patients have not been established | ||
FP for female | Children (0–14 y.o) | OC | No | No | No | Yes (>200) | Yes (1–49) | Yes (rare) | Yes (1–49) | No | Yes (1–49) | Yes (1) | No |
OTC | Yes (4) | Yes (1–49) | No | Yes (3) | Yes (1–49) | Yes (less than 38) | Yes (1–49) | Yes (1) | Yes (1–49) | Yes (1–49) | No | ||
GnRHa | No | Yes (>200) | Yes (1–49) | Yes (>200) | Yes (1–49) | Yes (not standard) | Yes (1–49) | No | Yes (1–49) | – |
No | ||
Adolescents (≥15 y.o) | OC | Yes (100–199) | Yes (1–49) | Yes (1–49) | Yes (>200) | Yes (1–49) | Yes (not so many) | Yes (1–49) | Yes (6) | Yes (1–49) | – |
Yes (1–49) | |
OTC | Yes (10) | Yes (1–49) | No | Yes (3) | Yes (1–49) | Yes (less than 38) | Yes (1–49) | Yes (1) | Yes (1–49) | – |
only for research | ||
GnRHa | Unknown | Yes (>200) | Yes (1–49) | Yes (>200) | Yes (1–49) | Yes (not standard) | Yes (1–49) | Yes (6) | Yes (1–49) | – |
No | ||
FP for male | Children (0–14 y.o) | SC | Yes (4, 5) | No | Yes (1–49) | Yes (>200) | Yes (1–49) | Yes (rare) | Yes (1–49) | Yes (6) | Yes (1–49) | No | No |
TTC | Yes (1) | Yes (1–49) | No | No | Yes (1–49) | Yes (rare) | No | No | Yes (1–49) | No | No | ||
Adolescents (≥15 y.o) | SC | Yes (>200) | Yes (1–49) | Yes (1–49) | Yes (>200) | Yes (1–49) | Yes |
Yes (1–49) | Yes (6) | Yes (1–49) | Yes (1–49) | Yes (1–49) | |
TTC | Yes (50–99) | Yes (1–49) | No | Mature tetsis only | Yes (1–49) | Yes (rare) | No | No | Yes (1–49) | No | No |
To investigate the barriers that inhibit promotion of FP for C-A patients, multiple-choice questionnaires were prepared (
Barriers to FP for C-A patients in Asian countries.
1 | 1 | 1 | 3 | 1 | 1 |
1 | |||||
2 | 4 | 1 |
2 | 1 | 2 | 2 | 1 |
2 | |||
4 | |||||||||||
3 | |||||||||||
1 |
4 | 4 | |||||||||
2 | 1 |
4 | 1 |
3 | 2 | 1 | 3 | ||||
3 | 1 |
2 | 1 |
4 | 3 | ||||||
4 | |||||||||||
1 | 3 | 1 |
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1 |
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Other | 3 |
To improve FP treatment for C-A patients, the kinds of specialists that provided FP for C-A patients were investigated, and 10 of 11 participants replied. In half of the countries (5 of 10), only a medical doctor could provide FP treatment for C-A patients. On the other hand, in four of five countries, nurses and/or psychologists could collaborate with the medical team in FP treatment for C-A patients. Although, patient navigators as independent position and child life specialists are not involved in FP for C-A patients, in Australia, nurses and psychologist are involved as patient navigators aiming to assist decision-making and psychological support. In addition, peer supporters including cancer survivors are not involved in FP treatment for individual cases (
Framework for providing FP treatment for C-A patients in Asian countries.
Medical doctor | Oncologist and/or reproductive medicine specialist | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Pediatrician (Oncologist) | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | |||
Pediatrician (Other) | ✓ | ✓ | |||||||||
Pediatric surgeon | ✓ | ✓ | ✓ | ✓ | |||||||
Hematologist | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ||||
Paramedical staff | Nurse | ✓ | ✓ | ✓ | ✓ | ||||||
Social worker | ✓ | ✓ | |||||||||
Psychologist | ✓ | ✓ | ✓ | ✓ | |||||||
Patient navigator | ✓ | ||||||||||
Child-life specialist | ✓ | ||||||||||
Others | Peer supporter |
All of the participants selected “Oral explanation” for informed assent, and “article” is used for informed assent as supplementary material (China, Japan, Philippines, Vietnam). To improve the quality of informed assent, Korea has animations about FP treatment, including sexual education. Only Australia has an “online or printed resource” and a “video a peer supporter has done” as “other” means (
Resources for providing information about FP for C-A patients in Asian countries.
Oral explanation | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Illustrated book | |||||||||||
Article | ✓ | ✓ | ✓ | ✓ | |||||||
Anime or movie | ✓ | ||||||||||
Other | ✓ |
Improvement of the survival rate following childhood cancer has led to an increased focus on the late effects of cancer treatment (
Barriers to promoting FP treatment for C-A patients may be divided into “medical factors” and others. For female C-A patients, OC and OTC are options as FP treatments, with SC and TTC for male C-A patients. In general, the selection of FP treatments depends on the patient's pubertal status. For post-pubertal female patients, EC with OC is one of the options for FP treatment (
OTC is the only FP treatment for pre-pubertal females and for post-pubertal patients who are unable to delay the initiation of chemotherapy, although its status is still experimental. It has been completed in patients of all ages and has been demonstrated to be safe and effective, with a low complication rate with minimal delay (
For post-pubertal male patients, SC with patient assent and parent or guardian consent is an actual established method for FP (
According to the present study, there are several factors based on “medical aspects” and “social aspects” that impede the progress of FP for C-A patients. Importantly, “How to provide FP treatment for C-A” is a major issue, more so than “medical technology” as a medical factor. When we provide FP treatment for C-A patients, there are some difficulties in explaining FP treatment and obtaining informed assent/consent from children/parents. For discussion about FP with C-A patients, “Knowledge about FP (guidelines, costs, facilities and specialist, informed assent/consent process),” “low referrals,” “low priority,” “Sense of comfort for health care professionals (they feel embarrassed to discuss FP),” “Patient factors (prognosis, cost, age, feel discomfort),” “Parent factors (contradictory opinions, feel discomfort),” and “Educational resources for patients and families” (
The present study demonstrated the variety of frameworks for FP treatment among countries and the need to implement consistent oncofertility models of care in Asian countries (
As limitations, we investigated current status of FP for C-A patients in Asian countries, however it is difficult to compare them simply. Because they have various backgrounds of priority, culture, religion, and economical situation among them. Also, our survey had covered mainly developed countries in Asia. To assess the current status more accurately, we need to investigate remaining 34 of Asian countries which didn't participate this study.
The present study demonstrated the developing status of FP for C-A patients in Asian countries. The problem that needs to be resolved is how to establish a system providing FP for C-A patients while being part of the research strategy to improve the current FP options. Asian countries hold a high value on family and so it is important that we develop an oncofertility model of care which will support the implementation of local, national and international guidelines and include healthcare providers and patients. In addition, greater consideration and more discussion needs to occur about “How to apply FP to our own society” are needed based on the various cultures and religions in the region.
The datasets generated for this study are available on request to the corresponding author.
ST drafted the manuscript. NSuz and AA revised manuscript. ST and NSuz designed the research and contributed to the critical discussion. JL, NM, BW, NSuk, VN, AA, DG, C-RT, AD, CL, WL, WD, R-CC, and SK contributed to collecting and analyzing data.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
fertility preservation
child and adolescent
International Society for Fertility Preservation
Asian Society for Fertility Preservation
Japan Society for Fertility Preservation
Fertility Preservation Society of India
American Society of Clinical Oncology
Japan Society of Clinical Oncology
embryo cryopreservation
oocyte cryopreservation
ovarian tissue cryopreservation
ovarian tissue transplantation
gonadotropin releasing hormone agonist
sperm cryopreservation
testicular tissue cryopreservation
gross domestic product
assisted reproductive technology.