|Year : 2018 | Volume
| Issue : 1 | Page : 24-29
Psychosocial needs of cancer survivors in fertility preservation: A systematic review
Shayanth Manche Gowda, Harish Thippeswamy, Santosh K Chaturvedi
Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India
|Date of Web Publication||13-Feb-2018|
Santosh K Chaturvedi
National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka
Source of Support: None, Conflict of Interest: None
Background: There is a rise in the global incidence of cancer however, with the advancement in the available treatment options there is an increased survival rate in patients with cancer. Among cancer survivors, there are varied psychosocial challenges in the context of fertility preservation which are poorly addressed and there are limited studies on psychosocial interventions to address those psychosocial concerns.
Methods: This literature review aims to study the psychosocial issues; ethical, moral and legal challenges in the context of fertility preservation in patients with cancer. PubMed and PsychINFO were systematically searched for English-language publications from the earliest available publication date of each database uptill November 2017. Among 144 unique articles concerning oncofertility and psychosocial issues; ethical, moral and legal challenges in fertility preservation in patients with cancer, 18 articles met the inclusion criteria and were included for the study.
Results: In the context of fertility preservation in patients with cancer, the most common short term psychosocial concerns are dealing with double jeopardy (cancer and risk of losing fertility), fear about cancer mortality, concerns about sexuality and reproductive capacity, body image and illness related adjustment disorder or depression which all could affect the decision making and quality of life if, left unaddressed. The long term psychosocial concerns are changes in relationship, prolonged grief, internal conflicts regarding disclosing about their illness, uncertainty about fertility and devastation from the confirmed infertility, post cancer treatment regret. The ethical and legal challenges which arises with fertility preservation in cancer patients are poorly addressed by the existent practice codes and guidelines.
Conclusions: To the best of the authors' knowledge, little research to date has addressed the psychosocial concerns of the patients with cancer in fertility preservation. Health care providers should take a pro-active step in identification and addressing the psychosocial concerns of the patients and to adapt a collaborative approach by involving mental health professionals. There is a need for guidelines that are culturally sensitive.
Keywords: Cancer survivors, ethical and moral issues, fertility preservation, fertility preservation counseling, oncofertility, psychosocial issues
|How to cite this article:|
Gowda SM, Thippeswamy H, Chaturvedi SK. Psychosocial needs of cancer survivors in fertility preservation: A systematic review. Onco Fertil J 2018;1:24-9
|How to cite this URL:|
Gowda SM, Thippeswamy H, Chaturvedi SK. Psychosocial needs of cancer survivors in fertility preservation: A systematic review. Onco Fertil J [serial online] 2018 [cited 2018 Nov 20];1:24-9. Available from: http://www.tofjonline.org/text.asp?2018/1/1/24/225415
| Introduction|| |
Globally, the incidence of cancer is on a rise. In 2012, an estimated 14.1 million new cases of cancer occurred worldwide and there was a 2–3 fold increase in countries with low and medium level of Human Development Index. The occurrence of cancer appears to vary across the gender. World literature reports of 205 new cancer cases for every 100,000 men and 165 for every 100,000 females, whereas a report from India mentions of 589,800 and 603,500 new cancer cases among males and females, respectively., Moreover, the incidence of cancer cases in India is expected to rise from 0.589 to 0.934 million among males and 0.603 to 0.935 million among females by the year 2026. Early detection along with advances in treatment has resulted in increased cancer survival rates, with a drop in cancer mortality rates. It is estimated that one in every 250 adults would be a survivor of childhood cancer by the year 2010. Hence, there is a need for increased awareness about the importance of fertility preservation counselling (FPC).
Sexual health and infertility are major concerns in cancer survivors and affect the quality of life (QOL). Nearly 40%–80% of females face possible infertility as a result of their cancer treatment in the form of chemotherapy, radiation, and surgery. Infertility rates are as high as 90% among men and women with cancer during their reproductive years.,, The prevalence of infertility in cancer survivors depends on various factors such as cancer type, type of surgery, cumulative chemotherapeutic dose, location of the radiotherapy, age, and reproductive history. Hypogonadism and androgen deficiency resulting from chemotherapy and radiation result in sexual dysfunction and infertility among male cancer survivors. Cancer of spine, abdomen, and pelvic region often requires radiation and administration of alkylating agents, which predisposes to ovarian failure and premature nonsurgical menopause among women in reproductive age group.,
The concept of fertility preservation (FP) in cancer patients is widely called oncofertility. FP is important as it can improve the QOL in the cancer survivors. Barriers to FP include factors such as lack of knowledge or incomplete awareness about loss of fertility and availability of options such as FP, time-sensitive decision-making, and the cultural beliefs about the artificial reproduction. A survey conducted in India on 27 survivors of childhood cancer reported that, at the time of diagnosis of cancer, there were deficiencies in the information provided to the patients and their families about the risk of infertility and the psychosocial support was inadequate. In this review, we have tried to systematically study as to why there is a need to study FP, impact of FP on the patients and their families, various psychosocial issues which arise in the context of oncofertility, challenges encountered in the context of oncofertility because of lack of clarity in the existent moral and ethical factors, and the role of mental health professionals in handling the psychosocial issues in cancer survivors with FP.
| Methods|| |
This review systematically identified the relevant literature using predefined search and inclusion strategies as per the Meta-analysis of Observational Studies in Epidemiology guidelines.
A systematic and comprehensive literature search was conducted through electronic database such as PubMed and PsychINFO for available literature until November 2017. Search terms were used in all different variants; singular or plural forms, Medical Subject Headings ®, and Title/Abstract. Keywords included (1) "psychosocial issues OR psychosocial impact OR psychiatry OR psychological issues" AND cancer survivors AND "fertility OR fertility preservation OR oncofertility;" (2) "Ethical OR Ethics OR Moral OR Legal aspects" AND cancer survivors AND "fertility OR fertility preservation OR oncofertility."
Articles with the above keywords were screened. Inclusion criteria for articles included: (1) Articles published in English language and (2) Articles with contribution towards understanding of psychosocial, ethical, moral, and legal issues in oncofertility.
Exclusion criteria for articles included: (1) Non-English publications (2) Nonhuman trials, or (3) Nonadult population, or (4) Lack of information towards understanding of psychosocial issues in oncofertility.
All citations of eligible articles were screened for the relevant articles and for supplementary references that were missed in the initial search. Abstracts of the selected eligible studies were screened. Selected articles were further screened at the full-text level.
| Results|| |
PubMed and PsychINFO searches yielded 80 and 64 articles, respectively. Twenty articles were common to both the searches. A total of 100 articles were excluded from 124 articles as they failed to meet the inclusion criteria. Following a full-text review of 24 articles, 8 articles were discarded due to lack of relevant information regarding the study objective. Two articles were included through the cross references. Selection process of publications is shown in [Figure 1]. Finally, 18 articles of interest were included in the present study.,,,,,,,,,,,,,,,,,
Perceived need for fertility preservation (FP) and impact of fertility preservation counselling (FPC)
Women with cancer during childbearing age and to some extent prepubertal children constitute the target group for FP. Most patients do not receive FPC despite the recommendations from the international guidelines. Individuals who receive FPC show better coping skills, lower long-term regret and lower dissatisfaction concerning fertility, and improved physical as well as psychological QOL.
There is a high perceived need among cancer survivors to preserve their fertility and to give birth since giving birth is considered as a symbol of life that defeats death. Nearly 63% of women with breast cancer referred to FP expressed interest in meeting with a mental health professional to counsel them to ease their decision-making difficulties about the FP; but only 7% of such patients had the opportunity to meet a mental health professional. Cancer survivors express the need for FPC in the form of standardized written information irrespective of age and parity. There is a large unmet need in terms of fertility-related information including FP, prior to the cancer treatment. A survey of 1041 female cancer survivors from California reports that only 51.8% of the patients recalled of having been informed about the risk of infertility and other reproductive risk factors, whereas only 12.2% of the patients recalled of receiving FPC.
Factors which could act as barrier for choosing fertility preservation in the cancer survivors
Factors such as poor access to FP services, lack of an understanding on the part of patient and health-care provider about risks of FP, lack of readily accessible information/education for patients and health-care providers, and poor interdisciplinary coordination in patient care act as barriers in the decision-making process in the context of FP.
Patients with cancer experience a wide range of psychosocial distress. In the early stages of coping, patients would be overwhelmed with the diagnoses of cancer. They are likely to be worried about mortality due to cancer, future recurrences, possible genetic transmission to their offspring, concerns about body image, sexuality, current and future relationships, as well as other illness-related adjustment difficulties such as depression and/or anxiety. Apart from the short-term psychosocial distress, cancer survivors also experience long-term psychosocial consequences such as distress, fear, and anxiety which could affect various aspects of their life including worries about a new relation/dating, internal conflict about disclosing about their illness and its related consequences, relating/comparing with their peers, devastation following confirmation of infertility, and difficulty coping with uncertain reproductive capacity after the treatment of cancer.
Anxiety symptoms can be associated with the time-sensitive decision about participating in the FP. FP can add to the financial constraints as it is not covered by insurance policies. Worries about possible risk of miscarriage, possible relationship changes after embryo cryopreservation, posthumous reproduction, and regret for not opting FP have been noted in about 30%–50% of the cancer survivors. These reproductive concerns assume more importance when the young survivors progress through their development stages to consider long-term relationship and family building.
A survey conducted on 64 female cancer survivors reported that various psychosocial factors such as emotional stress due to double jeopardy (cancer and infertility) and views about fertility being vital to survivorship had a greater impact on the decision-making about the FP. The reasons for moving forward with the FP were hope of being a mother and to avoid any future regrets; whereas, reasons for not opting for FP were concerns about delay in the cancer treatment, mental and physical exhaustion, affordability and cost of the FP procedures, and requirement of a sperm donor in case of single female. Most of these patients felt that they are the ones who took initiative in exploring about the FP but not the health-care professionals and the patients chose to visit fertility clinics to gather more information, to provide an informed consent, and to make a decision about FP.
Nulliparous women are 4.9 times more likely to undergo fertility preservation than one who has atleast one child at the time of cancer diagnosis. In addition, patients who receive FPC are more likely to undergo FP and show significantly lesser regret following cancer treatment than those who did not receive FPC. The factors which determines the decision of fertility preservation in cancer patients are provided in [Table 1].
|Table 1: Factors determining the decision of Fertility preservation in Cancer patients*|
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Role of mental health professionals
Good communication skills among health professionals are important while addressing concerns of patients with cancer. However, health-care providers are not adequately trained in communication skills. In a prospective study of 990 cancer patients, it was reported that 45% of patients felt the communication process with the physician to be unclear and 59% of patients needed to speak more with their physicians. Poor information, lack of clarity, omission of reproductive information, and lack of attention to the emotional needs impede understanding about illness and further affect the QOL even after several years following the diagnosis and treatment of cancer. In such a scenario, a mental health professional has the potential to play an active role in enhancing the communicational skills of the health-care providers through workshops, role play, and other tools of training.
Looking after the psychological well-being of the cancer survivors is one of the challenging and major roles of the mental health professionals. Maladaptive coping mechanism needs to be addressed which can possibly have an impact on the decision-making capacity along with health-related behaviors such as excessive substance abuse, smoking, poor oral intake, poor treatment compliance, and lack of physical activities. Comorbid psychiatric illnesses such as depression, anxiety, posttraumatic stress disorder, and substance use disorders  could affect the decision-making capacity of the cancer survivors and hence need early diagnosis and treatment by a mental health professional. In addition, handling normal grief as well as complicated grief forms an essential role for a mental health professional. The essential tips for enhancing the communication skills are described in the [Table 2].
Outcome of fertility preservation counseling
Patients who received FPC prior to the cancer treatment reported a high level of general satisfaction irrespective of the decision to choose FP, decreased conflict about FP decision, higher QOL/Life satisfaction score, and an increased ability to cope with cancer. These patients also reported high levels of hope, relief, a reason to live, a general good feeling, greater sense of peace and relaxation, and a sense of life insurance.
The long-term benefits of the FP were analyzed in a prospective study, where 47 female cancer patients who opted for FP were compared with 91 age-matched infertility patients without cancer. In the beginning of FP treatment, women with cancer reported higher levels of initial depression and anxiety symptoms compared with their infertile noncancer counterparts. However, the actual levels of depression and anxiety throughout the course of treatment remained constant in the FP group whereas they increased over time in the infertility group without cancer.
All cancer patients are not necessarily infertile at the time of cancer treatment and also not all patients would become infertile after the cancer treatment. Hence, it poses a challenge to the existence of a true medical indication for FP. However, addressing FP is a moral obligation as cancer and its treatment both can interfere with the normal reproductive functioning. FP before initiation of cancer treatment might not be a true medical indication, whereas the intention of prevention, humanization, and biopsychosocial impact of procreating disability should be considered. The principles of autonomy, beneficence, and nonmaleficence should chart the course of the chosen treatment strategy. The health-care providers should respect the opinion of children and adolescents, especially if they are able to express about fertility-related matters.
Ethical and legal concerns
Assisted reproduction in cancer patients
Assisted reproductive technique in cancer survivors is associated with ethical dilemmas such as children being at increased risk of cancer, premature death of a single cancer survivor and child becoming an orphan, and the possibility of being raised by a single parent.
Cancer patients are often excluded from insurance coverage because they are not technically "infertile" at the time when they seek care. Insurance companies are ethically obligated to cover the expenses toward FP in cancer patients because of inevitable iatrogenic damage to the reproductive organs.
Consent and assent in minors
A majority of the available FP procedures pose a "greater than minimal risk" given that they involve invasive procedures. It is an ethical dilemma when a child understands and (generally around 8 years of age) refuses participation in a fertility-sparing procedure contrary to parental wishes and vice versa.
The American Academy of Paediatrics guidelines state that research/treatment in children involving greater than minimal risk is permissible if:
- The risks are justified by the anticipated benefits
- The anticipated benefit is at least as favorable as that provided by alternatives, and
- Appropriate permission (parents' consent to participation of their child in research) and assent (willingness) to participate in a procedure by a minor over the age of 7 years has been obtained. This two-staged process of assent and consent can address the ethical dilemma about storing and using gametes.
Disposition of gametes
An embryo is the product of both egg and sperm and hence it belongs to both the egg and the sperm donors. Conflict arises when an embryo is created for reproduction and the parties involved subsequently disagree about its use, as in the case of separation, divorce, or death.
To prevent this kind of legal ambiguity, health-care providers involved in oncofertility need to emphasize on a prior contract specifying how embryos will be managed if the parties refuse to pay storage fees, disagree on future use, and if there is a death or divorce. A desirous couple should be referred to legal counsel to create contracts specifying their wishes for gamete disposition.
Use of an individual's gametes following the death is a highly controversial issue. The European Society for Human Reproduction and Embryology has laid guidelines to address the issues related to posthumous reproduction. These state that posthumous reproduction is acceptable only if: (a) The decision of using the gamete/embryo is made by the surviving partner in the relationship; (b) A written consent regarding the use of gametes was given by the deceased at the time of storage; (c) The surviving partner waits a minimum of 1 year to allow time for grieving before using the gametes.
Further, children born from posthumous reproduction should not be discriminated against as compared with those born prior to the death of a parent.
Many religions do not accept FP and assisted reproduction techniques as these procedures are considered to separate human reproduction from sexual intercourse (union of male and female).
In India, the Indian Council of Medical Research Code of Practice, ethical considerations, and legal issues for assisted reproductive technology is followed.
It is necessary to improve the skills of health-care providers about FP through awareness programs. Information about FP should be readily available in the form of brochures for the patients to understand. Infertility and FP are more extensively studied among female cancer survivors as compared to males; hence, there is a need to address these issues in the future studies. Most of the existent guidelines ,,, in the area of FP are not culture sensitive, to address the various religious beliefs on artificial reproduction across the countries and religions. Hence, there is a need for guidelines to focus on culture-sensitive issues in oncofertility. Concerned health-care professionals should consider periodic review of literature and guidelines in view of advances in science. Special focus is needed on the psychosocial issues among cancer survivors in the context of FP, which are generally neglected during the routine clinical care. There are no structured specific psychosocial interventions to address the needs of this unique population of cancer survivors with respect to fertility preservation. Most of the recommendations and guidelines stress mainly on providing information and options about FP rather than psychosocial interventions to address the coping abilities, emotional distress, facilitation of the decision-making process, and to improvise the QOL.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]