Abstract
Background:
Cancer survivor rates have increased over the past few decades leading to a growing interest in research related to quality of life (QoL). We attempted to explore the unique barriers that might prevent adult male cancer patients from accessing sperm cryopreservation in Pakistan.
Methods:
Semi-structured interviews of male cancer patients aged 18–45 years were audio-recorded in Urdu and translated to English and were transcribed ad verbatim. The topics included information regarding risk of infertility following chemotherapy, future reproductive choices, and barriers to sperm cryopreservation. Questionnaire to physicians containing four content domains of knowledge, attitude, practice, and barriers to sperm banking was also delivered. Data were entered and analyzed on SPSS.
Results:
Of the 25 patients interviewed, there were 10 cases of leukemia, 3 cases of lymphoma, 2 cases each of colorectal carcinoma and multiple myeloma, 1 case each of neuroblastoma and osteosarcoma, and solitary cases involving the lung, breast, thymus, brain, jaw, and testis. Four patients knew about the risk of infertility. All patients were aware of the option of sperm cryopreservation. Two patients had their sperm preserved before the initiation of chemotherapy. Perceived treatment-related expenses appeared to be the major barrier to sperm cryopreservation in nine patients. This was followed by lack of information, which was cited by eight patients, and religious reasons (n = 2 patients). Other barriers were female gender of the doctor and patient's preferences. Four patients stated no barriers. Nine physicians responded to the questionnaire. Seventy-eight percent of physicians agreed that cancer treatment increases the risk of infertility. 33.3% strongly agreed and 55.6% agreed that infertility can have an adverse impact on QoL.
Conclusions:
There is a significant lack of awareness among male cancer patients regarding infertility following cancer treatment. It is imperative that physicians inform them of this and discuss treatment options, along with addressing potential barriers.
Introduction
The past few decades have witnessed a dramatic improvement in the survival rates of cancer patients; however, the incidence of cancer continues to rise. 1 Unfortunately, this has led to a greater number of people living with the detrimental consequences of cancer treatment, particularly infertility. 2 Chemotherapy and radiation therapy can be gonadotoxic, and the effects may range from a transient decline in fertility to permanent sterility. 3 Many patients desire the maintenance of fertility, and the prospect of infertility can have a devastating impact on their psychological well-being and affect their quality of life (QoL). 4 Therefore, the American Society of Clinical Oncology recommends that “health care providers (including medical oncologists, radiation oncologists, gynecologic oncologists, urologists, hematologists, pediatric oncologists, and surgeons) should address the possibility of infertility with patients treated during their reproductive years (or with parents or guardians of children) and be prepared to discuss fertility preservation (FP) options and/or to refer all potential patients to appropriate reproductive specialists.” 5
The only established method for FP in men is sperm cryopreservation (banking). It is a relatively inexpensive, simple but effective intervention that is associated with higher patient satisfaction and enhanced emotional well-being. This is because the ability to bear and nurture children can signify a return to normalcy, and hence, sperm banking (SB) allows cancer patients to have a greater control over their lives.3,6
Despite its benefits, SB is underutilized, even in developed countries where patients might have better access to reproductive facilities. This indicates the presence of barriers that might deter patients from accessing such facilities. These may include lack of information, cost of treatment, patient/physician's discomfort, and limited time to discuss with patients. 7
The role of healthcare providers is crucial in the dissemination of information pertaining to FP. Hence, it is important for them to have sufficient knowledge regarding the risk of infertility, FP methods, and counseling of patients. 4
There is a dearth of literature focusing on the reproductive health of cancer patients in developing countries. This study is the first from Pakistan to highlight fertility concerns and to explore barriers to SB, which may be distinct from developed countries due to sociocultural differences and limitation of resources.
The study aims to identify patient- and physician-related factors that influence the decision of SB in cancer patients, with particular emphasis on cultural aspects. We hypothesize that the majority of male cancer patients are unaware of the risk of post-treatment infertility and SB and a small minority is referred for SB by physicians, while fewer actually utilize SB. Hence, it is important to assess the attitude of patients toward infertility and SB so as to highlight the need for physicians to counsel their patients. The conclusions derived from this study will help in the development of local guidelines that are tailored according to the diversity in our patient population. Additionally, they might assist oncologists in the modification of their clinical practice, so that they may keep the fertility wishes of patients under consideration. Ultimately, the patients will benefit from an improved understanding of FP techniques that will aid them in making informed decisions.
Subjects and Methods
The study was conducted at the Aga Khan University Hospital, Karachi, after obtaining approval from the ethics review committee with the approval number 3963-Onc-ERC-15.
Study population—patients
We conducted a qualitative study that included male cancer patients aged 18–45 years, irrespective of cancer stage or type. Patients were recruited at the outpatient department while they were receiving chemotherapy. Informed consent was taken. Of 31 patients who were approached, 6 declined and 25 consented to being interviewed. The interviews were semi-structured, audio-recorded, conducted in Urdu, translated into English, and transcribed ad verbatim. Patient's attendants who were conversant in Urdu served as interpreters for patients who were unable to communicate in Urdu. Each interview lasted from 10 to 30 minutes, and patients were enrolled till data saturation was achieved. The themes explored included knowledge of risk of infertility, provision of information, role of the physician, fatherhood, barriers to SB, and the impact of infertility on QoL. For each theme, codes were derived from the data and entered and analyzed on SPSS.
Study population—physicians
We designed a questionnaire that included four content domains: knowledge, attitude, practice, and major barriers pertaining to SB. The options were developed according to the Likert scale. The final questionnaire contained 33 items. Questionnaires were delivered to 10 physicians via email, 9 of which were returned with answers. Physicians included males and females, those who treated adult and/or pediatric cancers, and were hematologists, medical oncologists, pediatric oncologists, and radiation oncologists. Data were entered and analyzed on SPSS.
Results
The median age of our patients was 31.32 years (±SD 7.42, range 19–45 years). The number of children ranged from 0 to 10, with a mean of 4. Seven of our patients were single, two were engaged, and the others were married. One of our patients was a professional while eight patients belonged to the skilled labor group. Four were semi-skilled, three were unskilled, four were self-employed, three were unemployed, and two were students. Urdu was the predominant native language (n = 12) spoken by our patients followed by Sindhi (n = 7), Pashto (n = 4), Balochi (n = 1), and Brohi (n = 1).
Patient responses
The 25 patient interviews gave rise to 10 themes that were explored in detail.
Attitude toward risk of infertility
Infertility is a sensitive subject that needs to be approached with discretion. One patient said that the word “infertility” carries a negative connotation:
It is important but the thing is, people hesitate to talk about it. It doesn't sound good when someone repeats the word. It feels bad.
Eight patients expressed firm belief that the underlying illness and risk of infertility was the will of God. This implied that even though many had a strong desire to have offspring, they would be able to deal with the disappointment of childlessness.
First and foremost is your life, which should be saved first. If that gets saved then this second problem is very important.
Fatherhood
All patients who were childless, strongly desired to have offspring in the future.
In order to extend the growth of my lineage, it's compulsory for me to get married.
A child is like a foundation, if you don't have a child then anything.
A few patients were concerned about the transmission of cancer to offspring and wanted to postpone childbearing until recovery:
If it's a cancer patient then I would say that he should take a lot of care regarding this because the effects may be transferred to the future child.
Society and infertility
In Pakistani social life, usual expectation is for people to have offspring soon after marriage.
People want children. Children are a blessing from God. If they can't have children then it becomes a concern for the man as well as the woman.
It is not uncommon for females to be blamed for infertility.
In our society, it does become a problem if they haven't had a child within one year of marriage.
For a cancer survivor, their suffering is further aggravated by the sorrow of not being able to continue with their lineage, a point of great significance in the Pakistani society.
If they're not able to have children due to chemotherapy then the family will be sorrowful. Their lineage won't continue, their name will be lost.
Infertility and marital life
Infertility can disrupt marital life:
Dispute may develop in the house and it might be assumed that there is a problem with the girl, she isn't well or is sick.
Yes often people say that maybe there is something wrong with the girl and that's why they have a second marriage.
Attitude toward SB
The attitude toward SB was generally favorable:
If I didn't have children then I'd have considered it.
There can be someone else in my place, which might have a desire for children but develops this disease instead.
Provision of information
Patients were of the view that further information (n = 4) and counseling (n = 16) are needed, and there should be open communication (n = 4). Twelve patients believed that physicians are the most importance source of information and should be responsible for the initiation of infertility-related discussions. Four patients believed that they should bring up the topic. Twelve patients mentioned the role of nursing staff, whereas 8 patients considered the internet and other sources of information (n = 20) including pamphlets, lectures, and seminars. Sixteen patients believed that the risks of infertility should be explained in later appointments, but 4 patients said that it would be better for them to know everything from the beginning. Ninety-two percent of patients believed that physicians are the most importance sources of information.
Others believed the internet is an alternative source.
You've seen these days that it is the age of the Internet. If the patient isn't getting an answer from the doctor regarding this then there are online nursing website.
The general opinion regarding pamphlets and booklets was:
Every person who reads it will understand differently and will follow things differently.
There were differing opinions about the best time to discuss the topic with patients:
When the patient is moving towards recovery then I think they start feeling better. So I think they should be informed when they are doing well.
Two patients expressed the need for information regarding other aspects of reproductive and sexual health:
I had this discussion at the place where I went to get my sperms frozen. Even after that patients come to them, after completion of chemotherapy.
In my opinion, they should inform, irrespective of the stage. I'm not talking about a very aged person; but this thing should be told to a young person.
Role of the doctor
All patients remarked that doctors should initiate the discussion:
However, this is mandatory; every doctor is taught that according to regulations, it is mandatory to guide patients.
Some lamented not having been informed by their physicians:
The doctor should have. The doctor should have said that he is administering a medicine that can have this effect.
Some patients said that this issue should be discussed, irrespective of the gender of the treating physician:
No because they are doctors, whether they are male or female, you should keep this matter in front of them.
Experience with SB
Of 25 patients, 4 were aware that cancer chemotherapy can lead to an increased risk of infertility and had also heard of SB. Their physician had informed three of them. The fourth had acquired information through other sources:
Yes, absolutely. I had thought about it and I could only search for it on the Internet because I couldn't ask the doctor about this.
I went there and consulted them, so they told me the details of sperm banking for patients on chemotherapy.
Two patients decided to bank their sperm because they did not want to take any risks:
Obviously, I didn't want to take a chance.
One patient decided against SB because he wanted children born through the natural way:
No because I know that you don't have normal babies in that, then you get test tube babies. […] However, the doctors also told me that there is a 70–80% chance that patients are able to have children.
One of the patients did not get his sperm banked because he was not able to ask his doctor about it before initiation of chemotherapy:
Yes, absolutely, there is no other reason, nor is there a religious reason or any other problem. The only thing is that I wasn't assisted completely that's why I didn't get it done.
Alternatives
There were variable responses regarding adoption as an alternative for cancer survivors with infertility:
That would be a stranger's child, not your own flesh and blood. Your body's blood is your own.
In our Pashtun society, we don't have this tradition of adoption.
That would be the last resort. I will try to have my own children.
Offspring born through sperm donation were considered unlawful:
From the religious point of view, they say you shouldn't get test tube babies. You don't know, if they will be from a Muslim or Non-Muslim, this goes against Sharia.
Barriers
Female gender of doctor was considered as a barrier to SB by some of the patients:
There shouldn't be, I don't think there should be because whether the doctor is a male or female, their profession, their job.
Cost of SB can be a barrier for some but not for others:
Cost can be the real barrier for some. Family members might not be willing to pay for it.
It's such an important life decision that one can manage to arrange 20–30 thousand, when he's getting chemotherapy worth 200,000–300,000 rupees, getting radiation and surgery.
Family's support can be barrier:
Money would be the biggest, after that will be his health, after that would be his family.
Patient's personal preference can be a barrier:
It depends on his desire; if he really wants it then he will neither hesitate nor delay.
Religious values can be a barrier for some but not for others:
The biggest reason, in my opinion will be a religious reason. Secondly, maybe its expenses.
No from the religious point of view, in my opinion if you use someone else's sperm then according to ethics and our religion, it would be Haram.
Lack of information was considered a significant impediment:
So they do inform, they say that it is mandatory to present this option.
Patient's hesitation can be a barrier:
Maybe if the doctor was alone, perhaps I would have spoken to him the first time but there were postgraduate trainees, so I was hesitating.
Doctors should talk to them about this. My wife had been asking me for quite a long time to talk to my doctor but I couldn't during the first and second appointments.
Insufficient time during appointments for discussion:
When we have an appointment with the doctor, it doesn't last for more than 10 minutes and we only discuss our treatment-related issues.
Physician results
Demographics
Nine physicians responded to the questionnaire. Male:female ratio was 1:0.8. Seven consultants treated adult malignancies, whereas two were treating childhood tumors. The group composed of four assistant professors, one associate professor, three senior instructors, and one professor. The median age ± SD was 42 ± 6.2 years (range: 33–51 years).
Knowledge
Seventy-eight percent of physicians agreed that cancer treatment increases the risk of infertility. Furthermore, 33.3% “strongly agree” and 55.6% “agree” that infertility can have an adverse impact on QoL. Eight physicians considered them knowledgeable regarding FP methods. All had some degree of awareness with respect to international guidelines regarding FP, although four physicians were either “somewhat” or “slightly aware” of them. Six physicians reported “moderate” awareness regarding FP facilities outside their practice site. Six physicians considered themselves to be “somewhat,” “slightly,” or “not at all” aware of their institutional procedures.
Attitude
Five physicians “never” felt uncomfortable with discussing fertility issues with their patients. All physicians considered it important to develop local guidelines. Five physicians believed that they needed additional training to help them deal with fertility issues.
Practice
All physicians initiated FP options according to the patient's situation. Age appeared to be the most important factor. Three physicians considered relationship status. Three physicians stated that their patients “often” enquired about fertility-related issues, whereas others reported that their patients “sometimes” (n = 2), “seldom” (n = 3), or “never” (n = 1) expressed their concerns. Three physicians stated that they “very frequently” referred patients to fertility centers. Physicians considered patient's wishes regarding FP when planning cancer treatment “most of the time” (n = 5). Six physicians responded that they “rarely” or “never” provided written information to patients in the form of pamphlets and references to support decision-making.
Barriers
Perceived high cost of FP, religious/cultural/moral beliefs, and lack of knowledge regarding impact of cancer on fertility and FP methods were cited as “moderate” or “somewhat of a barrier.” However, poor prognosis, ill health of the patient, and absence of referral system for physicians were considered as more significant barriers with majority of physicians stating them as “extreme” or “moderate barriers.”
Discussion
Infertility and sexual dysfunction are important concerns of cancer patients. Most cancer survivors desire to have a biological child. Despite the availability of guidelines, a large number of cancer patients never receive counseling about the implications of treatment on sexual function, risk of infertility, and FP techniques.8,9
The presence of multiple patient- and physician-related barriers precludes such discussions from taking place. Importantly, both cancer patients and their physicians tend to prioritize survival over FP. Nevertheless, the topic should be discussed to avoid future regret. 10 Our patients were largely uninformed about the impact of cancer treatment on fertility.
Discussions pertaining to sexuality and fertility often require the inclusion of individuals other than just patients and physicians. Parents, partners, extended family, friends, and religious/community leaders might need to be involved in the decision-making process. This suggests that fertility concerns extend beyond the patient and have to be considered in the context of society and culture. 11
Patient perspective
Attitudes
Fatherhood is an important issue for cancer survivors. Some have even reported that the ordeal of cancer increased their desire to have children. 12
Fertility-related distress tends to have a negative psychosocial impact on cancer survivors. It may generate fears regarding marriage, relationships with spouse, and reproductive uncertainty, concerns that also reflected in the answers given by our patients. Furthermore, there may be reservations regarding the risk of birth defects and cancer in the future offspring. However, studies have shown that children born to cancer survivors are not at an increased risk for congenital abnormalities. 9 The emotional trauma of cancer and infertility ultimately may lead to the development of psychiatric illnesses, including anxiety and depression. 13 It has been observed that infertility in men is greatly stigmatized in most cultures as it is closely associated with impotency and emasculation. Furthermore, it relates to notions of descent and legacy, which are highly valued in South Asian culture. 14 In this regard, SB may have psychological benefits as patients gain reassurance that they may be able to have children in the future. 15 Our patients' replies parallel the findings in the published literature. All patients considered cancer-related infertility to be an important issue as fatherhood is of immense significance to most. They believed that infertility can lead to both internal psychological as well as external conflicts. They were of the opinion that the option of SB should be offered to all. With the exception of those who had completed their families, all desired to have offspring in the future, particularly those who were childless at the time of diagnosis. Additionally, there were a few older males with seemingly large families who wished for more children. This supports the view that assumptions based on socio-demographic factors may not always be reliable determinants of who should be offered SB. 16
Provision of information
According to a systematic review conducted by Goossens et al., young, childless, single, and patients who had not completed their families had greater information needs. Patients preferred to be informed during a private counseling session, and other sources of information such as written material were of secondary importance. The appropriate time for the discussion was thought to be after the initial cancer diagnosis, before the start of treatment. The topic should be initiated during later appointments, to allow them sufficient time to accept the diagnosis of cancer so that they are not overwhelmed with information and are not rushed into making a hasty decision. 17 The physician's role as a facilitator is critical in the decision-making process, and the physician should initiate all fertility-related discussions.18,19 Our patients had similar preferences. A few patients remarked that all infertility-related information should be revealed right at the start of diagnosis as that would give them more time to make decisions. Others believed that they should be informed right before or after treatment of cancer. Our patients thought nurses or a designated counselor could provide information to patients, but most believed that owing to the sensitive and complex nature of the topic, a knowledgeable physician should be the main source of information.
The preservation of sexual function following cancer treatment holds priority for most patients. Nevertheless, majority do not receive support and information related to sexual health, and it is considered as an important unmet need for cancer survivors. 9 The subject of sexual dysfunction among male cancer patients was brought up by two of our patients who believed that it was neglected during physician–patient discussions.
Alternatives
We received varied responses in terms of alternative options for those who desired offspring. Many considered adoption as a last resort. There was opposition to the concept of using donor sperm, as it was viewed as unlawful according to religious principles. Hence, a patient's faith, values, and personal preferences all influence the selection or negation of SB and alternative options. 14
Physician perspective
Knowledge
Most of our physicians had knowledge regarding SB but lacked information pertaining to patient referral. This issue has also been identified in other studies.9,20 Other gaps in knowledge found among physicians include not having awareness of guidelines, cost of SB, and discussion with young patients. 21
Attitude
In most circumstances, oncologists play the principal role in the treatment of cancer patients. Hence, oncologist's attitude toward FP can influence the choices made by patients.20,23 A minority of healthcare professionals receive training on fertility-related discussions. 17 Our oncologists believed that the establishment of guidelines and training of healthcare professionals is necessary.
Practice
Our physicians discussed fertility issues only with the patients who were believed to be suitable candidates, for example, younger patients and those with a favorable prognosis. Despite the availability of advanced resources and manpower, similar results have been seen in developed countries. A cross-sectional study conducted by Takeuchi et al. found that a large number of physicians do not routinely discuss FP with their cancer patients.20,22 Patient's financial background, parity, age, and prognosis often influence the physician's decision to discuss FP.17,20
Barriers
An estimated 70%–75% of young cancer survivors are interested in parenthood but considerably lower numbers utilize FP treatments. 11 There are some shared challenges to barriers that have been recognized throughout the world.
These can be physician-related such as lack of awareness of fertility risks, embarrassment, confusion about their role in the process, knowledge of FP options, method of referral, and counseling skills. There can be patient-related barriers, for example, age, prognosis, necessity for urgent treatment, parenthood, and financial situations. Additionally, there may be institutional barriers, including insufficient time duration of appointments, and shortage of resources.17,21,24,25
Religious beliefs of patients and/or physicians can sometimes prevent the discussion of FP but in other instances may facilitate it. 9 A few of our patients believed that SB would be rejected on religious grounds. However, some were of the view that that utilization of one's own sperm is lawful but rejected the option of using donated sperm. One patient justified SB by proclaiming that religion encourages procreation. This signifies that there are several subtleties to this subject and it must be approached tactfully.
Cost was an important barrier to SB by most of our patients. However, some maintained that if the individual is interested, then no price is too high. 16
Patient hesitancy was a recurrent theme in our study. Keeping in view of socio-cultural norms, it is important to create a comfortable atmosphere during counseling to encourage patients to talk openly.
The issues pertaining to FP among cancer patients who were identified by us strongly corroborate existing research on the subject; however, we also face additional challenges that might impede access to FP. In Pakistan, quality healthcare is not easily accessible. Healthcare facilities are spread out disproportionately, with rural areas suffering the most, even though majority population resides there. Conditions at government-run hospitals are dismal, and people are often left with no choice but seek private doctors. This adds to their cost burden and causes delays in seeking care. 26 The low literacy level in Pakistan has hampered progress in health literacy. Many lack insight regarding their diseases. 27 These issues are exemplified by the state of cancer care in Pakistan. Cancer patients often present at an advanced stage, there is a dearth of cancer treatment facilities, lack of trained personnel, and hence, disparities exist in standards of treatment throughout the country. 28 Considering the deficiencies of basic cancer care in Pakistan, we believe that addressing fertility issues in cancer patients will be a challenge.
Physicians often lack time to discuss fertility concerns with their patients; however, we recommend that they initiate the process and refer them to a counselor for further information, as it is the right of every patient to have basic awareness of the risks of treatment. Another point to keep in mind is that the physician's gender can be an important factor in these discussions. It has been noted that Muslim patients express greater comfort with doctors of the same gender. 29 The same has also been noted for nurses. 30 Patients' preferences need to be respected, particularly since fertility issues are sensitive in nature.
A limitation of the present study is that of a small sample size. It was conducted at a tertiary care hospital where patients come from all over the country and can be considered as representative of the population at large. However, our physicians may have attitudes and practices and experiences different from those in other parts of the country.
Conclusions
We believe that all patients of reproductive age should be informed about infertility following cancer treatment. The physician, giving the patient privacy and sufficient time to absorb information and ask questions, should initiate the option of FP.
A multidisciplinary approach of health professionals is essential for the improvement of outcomes.
Footnotes
Acknowledgment
This study was supported by institutional seed money grant of PKR-178,500/- (Ref ID# PF68/0215).
Ethical Approval
Obtained approval from institutional ethics review committee (3963-Onc-ERC-15).
Author Disclosure Statement
No competing financial interests exist.
