From Discussion to Action: Mapping the Oncofertility Referral Gap in Indian Breast Cancer Care

Abstract

Purpose:

There is an increase in the incidence of breast cancer in young Indian women. With better oncological care leading to improved survival rates, fertility preservation (FP) has become an important part.

Methods:

A cross-sectional survey done across oncologists in India. The questionnaire included questions on their demographics and questions on knowledge of oncofertility, attitude toward discussing FP, and their current clinical practices. We used descriptive statistics to analyze the data using SPSS software.

Results:

A total of 123 oncologists completed the questionnaire. Most of them were surgical oncologists (68.3%). The majority (55%) had 3–10 years of experience, working in metropolitan areas (60%), and at teaching hospitals (58%). Their knowledge of oncofertility was assessed to be good. They also had a very positive attitude, with 89% being comfortable in discussing FP with their patients. However, we found a big gap, with nearly half (47%) of the oncologists saying that less than 25% of their patients ask questions pertaining to fertility. Only 22.8% of the oncologists had successfully referred at least one patient for a fertility consultation. This shows a large gap between knowledge of oncologists and actual discussion and final outcomes.

Conclusion:

Indian oncologists appear to have a sound knowledge and a positive attitude; however, there is a major gap between their awareness and what happens in practice. The main problem seems to be patient’s perspective with patients not willing or not able to pursue these options, even when they are made aware about them.

Keywords

oncofertility breast cancer reducing inequities

Introduction

Breast cancer is the most common cancer in women, both worldwide and in India. There is an increase in the number of young women being detected with breast cancer at a younger age.¹ This accounts for almost 40% of all malignancies detected at this age. Improvements in oncological care, precise surgery, multiple lines of chemotherapy and immunotherapy, and radiation have increased the survival rates for breast cancer patients over the last decade.² With longer survival, greater stress needs to be given to the long-term quality of life of these survivors. For the many young women diagnosed with breast cancer during their childbearing years, fertility preservation (FP) is a very important issue.²

Chemotherapy, given for breast cancer, can have detrimental effects on the ovaries and may lead to reduced function, resulting in infertility and early menopause.³ These can lead to difficulty in becoming pregnant and having children of their own, which often leads to a lot of emotional distress among the young cancer survivors.⁴ Infertility can adversely affect a survivor’s self-esteem and psychological and social well-being and personal relations, even long after completion of the cancer treatment.⁵ Major international bodies such as the American Society of Clinical Oncology and the European Society for Medical Oncology, in their recommendations, emphasize that all young patients should have knowledge on their inherent risk of infertility due to treatment and also be educated on options available to preserve their fertility before they start cancer treatment.^6,7

In spite of these recommendations, in a real-world scenario this often fails to happen in its complete nature. A detailed review of the literature on this aspect reveals a number of issues that can hinder the successful implementation of this FP program. The shortcomings identified range from the lack of adequate knowledge among oncologists, the lack of time with the consultants to discuss the issues with their patients, the high cost of the procedures available, working at a nonuniversity hospital, the lack of awareness among patients about their options, and a lack of clear pathways to refer patients to fertility specialists.^8,9 In India, these problems are often made worse primarily by our unique social and cultural factors, with family playing a major part in treatment—including decision making—secondarily by the economic issues.¹⁰

Many studies have evaluated the oncologists’ perspective and their practice behavior in the Western and other Asian countries,^11–17 but there is very little data from India. It is important, first, to understand the extent of knowledge and attitude among Indian oncologists on FP before going ahead in finding the specific local barriers. This is important to design strategies to overcome these barriers and make oncofertility a standard part of cancer care. This study was done to get an accurate measure of the knowledge, attitude, and practice (KAP) of oncologists across India regarding oncofertility for young women with breast cancer.

Materials and Methods

Study design and participants

This was a cross-sectional, descriptive survey conducted between January 2024 and July 2024. The study population included practicing oncologists, including surgical, medical, and radiation oncology specialties, who were treating breast cancer patients in their day-to-day practice. It was done on a national scale in an attempt to cover all geographical states. Participants were contacted through professional networks and oncology forums. Databases of oncologists enrolled in the national oncological societies such as Indian Society of oncology, Indian Association of Surgical Oncology, and the Indian Society of Medical and Pediatric Oncology were used to share the questionnaire and conduct the study.

Questionnaire

The questionnaire was developed based on a review of existing literature and previously validated surveys on the topic.^{10,12,13,17–19} It was divided into two sections. The first section collected demographic and professional information, including the oncologist’s specialty, years of experience, type of practice, and geographical location. The second section consisted of multiple-choice questions designed to assess the three domains of KAP regarding oncofertility for young breast cancer patients.

Data collection and analysis

The survey questionnaire was distributed via email and messaging platforms. Participation was voluntary and completely anonymous. Of the total 250 oncologists contacted, a total of 123 oncologists submitted fully completed questionnaires. The collected data were entered into a database and analyzed using IBM SPSS Statistics software. Descriptive statistics, including frequencies and percentages, were used to summarize the demographic data and responses to the questions. Given the exploratory nature of our study and the small sample size, descriptive analysis was only done, and inferential analysis and testing were not done to avoid overinterpretation.

Results

Profile of the surveyed oncologists

A total of 123 oncologists from different parts of India took part in our survey, which is a small sample size given the population and number of oncologists. The group was diverse, with the majority being surgical oncologists (68.3%), followed by medical oncologists (19.5%) and radiation oncologists (12.2%). The sharing of the questionnaire was done using online means, which could lead to a possible selection bias. In terms of experience, almost a quarter (23%) had more than 10 years of experience and about half (55%) had 3–10 years of experience in treating breast cancer patients. A little less than two-thirds of the doctors (60%) were practicing in tier one metropolitan cities, while 32% were in tier 2 cities, while the rest were from rural areas. The majority of oncologists (58%) were based in teaching hospitals, while 34% were working in corporate hospitals, and a small number (8%) were freelancing. When asked about their patient load, most oncologists (66%) said they treat fewer than five new young breast cancer patients each month, with only around 17% of oncologists treating more than 10 new young breast cancer patients in a month. These demographic and professional characters are shown in Table 1.

Table 1.

Demographic and Professional Characteristics of Study Participants (n = 123)

Characteristic	Category	Number	Percentage (%)
Specialty	Surgical oncology	84	68.3
	Medical oncology	24	19.5
	Radiation oncology	15	12.2
Years of experience	<3 years	28	22.8
	3–10 years	68	55.3
	>10 years	27	21.9
Area of practice	Tier 1 (metropolitan)	74	60.2
	Tier 2	39	31.7
	Small towns	10	8.1
Workplace	Teaching institution	71	57.7
	Corporate hospital	42	34.1
	Freelancing	10	8.1
Avg. no. of young breast cancer patients/month	<5	81	65.9
	5–10	21	17.1
	>10	21	17.1

Knowledge about oncofertility

Our survey found that the oncologists generally had a good level of knowledge about FP. A large majority (85%) had the knowledge that a patient should be referred for an FP consultation at the beginning, when the cancer is first diagnosed. Also, 62% of the doctors agreed that there is enough clinical evidence to support referring young breast cancer patients for FP; however, 26% were not sure about the evidence, and 11% disagreed. This shows there is a lack of current knowledge among a section of doctors. When it came to practical knowledge, about two-thirds of the doctors (64%) had knowledge of specific specialized centers where they could refer patients for FP options, but a significant number (36%) did not know where to send their patients.

Attitude toward oncofertility discussions

The attitude of the doctors toward FP discussion was very positive in its entirety. A large majority (89%) said they were comfortable discussing FP options with their young patients. The other 11% said they would only talk about it if inquired about by the patient. No one said they were completely uncomfortable with the topic. This shows that most oncologists are willing to have these important conversations with their patients.

Practice and patient behavior

Even though the doctors had good knowledge and a positive attitude, our survey found few major challenges in actual practice. To the question “How many of their young breast cancer patients ever asked about fertility issues related to treatment?” almost half of the doctors (47%) said that less than a quarter of their young patients ever bring up the topic. This patient behavior puts the responsibility to start the FP conversation almost always on the doctor.

Another important finding—majority of oncologists (63.4%), even though they had offered information on FP to their patients; however, the patients often did not take further steps. This problem is very clear when we look at the final referral numbers—where only 22.8% of all the doctors surveyed were ever able to successfully send one patient for fertility consultation and only 8.1% had patients enrolled for FP (Table 2).

Table 2.

Detailed Knowledge, Attitude, and Practice Findings (n = 123)

Domain	Parameter	Response category	Number	Percentage (%)
Knowledge	Belief in sufficient clinical evidence for FP	Agree	76	61.8
		Disagree	14	11.4
		Not Sure	33	26.8
	Ideal timing for FP referral	At cancer diagnosis	105	85.4
		After treatment initiation	16	13.0
		After a 2-year disease-free interval	2	1.6
	Awareness of referral centers	Yes	79	64.2
		No	44	35.8
Attitude	Comfort level in discussing FP options	Yes	109	88.6
		Only when the patient inquires	14	11.4
Practice	Patient-initiated inquiry about fertility side effects	<25% of patients	58	47.2
		25%–50% of patients	28	22.8
		50%–75% of patients	16	13.0
		>75% of patients	21	17.1
	Offered FP information (but patient declined)	Yes	78	63.4
	Successfully referred at least one patient	Yes	28	22.8
	Successfully enrolled at least one patient	Yes	10	8.1

FP, fertility preservation.

This shows a big gap between doctors attitudes in fertility discussions (high knowledge and attitude toward FP) and patients being sent and enrolled in the program (only 22.8% sent patients for consultation and finally only 8% successfully registered). This highlights the fact that many patients, though they have received the knowledge on FP from their treating oncologists and after having had a discussion on where to get them, only a small percentage went for a consult and finally enrolled in the program. The numbers tell the fact—issues with the patients or their families, which will need to be assessed to determine the exact cause to help us take corrective measures.

Discussion

Our study of the knowledge attitude, and practice of Indian oncologists on FP among young breast cancer patients, gives us a valuable insight into the state of oncofertility care in our country. The study shows that oncologists have good knowledge and a positive attitude in discussing the issue of FP—similar to the study in Asian countries by Baek et al.¹⁸ and better than the study among Chinese oncologists.²⁰ Alshamsan et al. in their study highlighted that the female oncologists were more likely to report an up-to-date knowledge of the FP practices compared to male oncologists, but in our study, we could not make this differentiation as gender data were not collected.¹⁵

The knowledge level of the doctors in our survey is positive. The fact that 85% of oncologists are aware that FP discussions should happen at diagnosis is in line with international guidelines.^4,6,7 This positive knowledge is on par with developed countries, as seen in the Quin et al. study, which showed >90% awareness among participants¹⁶ and better than the study by Warner et al. among Canadian breast surgeons (46% inadequate knowledge).¹⁹ The majority of our respondents were from the tier 1 metropolitan cities, and being in academic institutions, it is possible that oncologists in these settings have better access to FP resources and practices.

Although the level of knowledge is good, our data also highlight some areas for improvement—26% were not aware of the evidence for FP and 36% did not know where to refer patients. This lack of practical information posts a practical barrier.

In terms of attitude, it is very encouraging that almost all Indian oncologists (89%) were comfortable talking about FP. This is a big advantage for oncofertility programs. Our results were similar to Western studies where doctors were willing to discuss with patients.¹⁵ Forman et al. from the United States reported only 61% of the respondents had discussed fertility issues with patient and 39% did not,¹⁴ and in the study from France by Sallem et al., only 45% discussed fertility with patients.¹³ In our study 11% of doctors replied that they will initiate discussion about FP only if the patient asks. This is an important group to consider for improvement.

Our study also highlights the fact that patients rarely start this conversation themselves. Almost half of the doctors (47%) said that less than one-fourth of their patients ever ask about FP. This may reflect patient-level barriers, which were not directly assessed in this study. It also reiterates another important issue—that a doctor with a passive approach will probably never get this vital information across to their patients. In the scoping review by Anazodo et al., authors have emphasized the need to improve the knowledge and understanding of health care professionals to enhance their confidence and hence improve FP referrals.²¹

The most important finding of our study is the gap between practice and results. We can see a clear funnel: 89% of doctors are comfortable with the discussion, 64% knew where to refer, and 63% have offered information. But all this leads to only 22.8% having ever successfully referred a patient and only 8.1% having successfully enrolled their patient in the program. The main reason for this seems to be that patients related determinants, for which further research is required. This is different from the developed countries, where poor prognosis (30%), urgency to start treatment (22%), and costs (4%) were usual barriers, which prevented the FP.^16–19In the study from Japan by Shimizu et al., the lack of referral centers (45%), time constraints (45%), and recurrence risk (51%) were found to be significant barriers to proper referral for FP.¹⁷

Our new findings indicate the main challenge of oncofertility in India is not just in educating doctors but in understanding and solving the problems faced by patients and families with cancer patients in terms of FP, which will lead to its effective implementation. In the study by Salma et al., they found that these patient-side barriers are complex. The high cost of FP procedures was also found to be a major issue. At most places, this medical part was rarely covered by insurance in India.¹⁰ Also, in the study by Quinn et al., they found that there was a strong fear that FP procedures might delay the start of their life-saving chemotherapy.¹⁶

On top of these practical issues, the Indian social and cultural context is particularly important. A cancer diagnosis can be a shocking and stressful event for the whole family. In India, major decisions are often made by the family, not just the patient. The family might prioritize the cancer treatment above everything else, including long-term fertility, as seen in this study by Salma et al.¹⁰ There is also a general lack of awareness about how successful these modern FP techniques are in the real world.

Limitations

The data were self-reported by the doctors, so it might be influenced by what they remember or what they think is the right answer. Our survey did not ask for the specific reasons why patients refused FP, which is an especially important area for future research. Also, even though we had 123 doctors in our survey, this may not be enough to represent all oncologists in a large and diverse country such as India. So this may be considered as a hypothesis-generating and cannot be taken as confirmatory without a bigger study.

Conclusion

Indian oncologists have good knowledge and a positive attitude about discussing FP with their young breast cancer patients. However, this does not lead to successful practical outcomes, as very few patients are successfully referred. The possible problem seems to be the patient-related, which needs further evaluation. Future research must focus on identifying patient’s issues and on empowering patients. This will help to ensure that every young woman with breast cancer in India gets a real chance to make an informed choice about her future fertility.

Footnotes

Acknowledgment

The authors thank all those who participated in the survey.

Authors’ Contributions

All authors contributed equally toward the conduct of the study and preparation and approval of the article.

Ethical Considerations

Ethics approval is not applicable as it does not involve patients. This study was only a survey of oncologists getting their knowledge and awareness levels.

Conflict of Interest

No competing financial interest exists for any of the authors.

Data Availability

The data are available on request with the corresponding author.

Funding Statement

No funding was received for this article.

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