Impact of Testicular Cancer on Socio- Economic Health, Sexual Health and Fertility of Survivors – A Questionnaire based Survey

doi:10.21203/rs.3.rs-4952343/v1

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Impact of Testicular Cancer on Socio- Economic Health, Sexual Health and Fertility of Survivors – A Questionnaire based Survey

https://doi.org/10.21203/rs.3.rs-4952343/v1

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Purpose

Testicular cancer (TC) is diagnosed at a young age and carries a remarkably high cure rate even with advanced stage at diagnosis. Hence, there is a sizeable population living in the survivorship phase. Many studies have highlighted the plight of TC survivors as a result of late side effects of different therapeutic modalities used for treatment of TC. Although, a number of co-morbidities are known to cause chronic diseases and mortality in TC survivors, in this study we focus on the impact of TC on socio-economic health, sexual health and fertility.

Methods

We performed a questionnaire based survey on TC survivors in one of the cancer centres of Ireland. Questionnaires were designed to measure the impact on social, sexual and economic health on a five point Likert scale. Any effect on the fertility was investigated with questions regarding biological children before and after cancer with or without medical assistance.

Results

A total of 83 TC survivors participated in the study. Of all participants, 17% reported issues with fertility and the same proportion reported seeking medical help to conceive. The percentage of survivors who experienced fertility issues persisting for more than 1 year was 14%. Almost half of our respondents revealed some effect on their performance at work and personal finances. Around one third, had an impact on career choice, job security and relationship with their partner. Regarding sexual health, worst repercussions were noted on the sex drive and body image perception, where close to half of the respondents reported at least some deterioration. Ejaculation and erectile function was affected in 30% of the participants.

Conclusions

High cure rates in TC are coupled with long term side effects, consequently affecting the socio-economic and sexual health of survivors. A comprehensive and holistic survivorship program is needed to improve the quality of life and health of TC survivors.

Biological sciences/Cancer/Germ cell tumours

Biological sciences/Cancer/Testicular cancer

testicular cancer

survivors

socioeconomic impact

germ cell tumours

cancer survivors

Sexual health

Testicular cancer (TC) is a rare tumour (1%), that is mostly diagnosed at a younger age[1]. Since the advent of the cisplatin based chemotherapy regimens, the cure rates are reported to be above 95%[2]. Cisplatin based multi-drug regimens, first used in 1974, hugely improved the prognosis compared to the pre-cisplatin era[3, 4]. Moreover, recent decades have seen an increase in the incidence along with an improvement in the survival rate[1]. Unfortunately, these high cure rates come at a cost of late side effects, particularly in the patients who receive chemotherapy and radiotherapy[5]. These side effects encompass a list of malignant and non-malignant conditions including late recurrences, second malignant neoplasms, cardiovascular disease, renal insufficiency, pulmonary disease, hypogonadism, infertility and metabolic syndrome[6]. On top of these complications, a higher incidence of psychological conditions including anxiety and fear of cancer recurrence have also been reported in this cohort[7]. As most of the survivors are young at the time of diagnosis, they have to brave these complications for decades to come. These physical and psychological complications have been reported to cause a negative impact on the social, economic and sexual wellbeing of TC survivors[8, 9]. A higher level of disability, unemployment and sick leave has been reported in recent studies[8].

An estimated half of patients studied have abnormal semen analysis at the time of diagnosis before any treatments[10]. Chemotherapy, radiotherapy and surgeries can further deteriorate the sperm production, motility and erectile function[11]. As a result, reduced rate of paternity is found in TC survivors compared to normal population even with pre-treatment semen cryopreservation techniques[11]. These consequences of treatment also cause the re-entry and readjustment problems for the survivors back into society, as they are nervous and anxious about their fertility [12]. Many researchers have reported long term deterioration in sexual health including erectile dysfunction, sexual dissatisfaction, low sex drive and orgasmic dysfunction[13]. This long term deterioration in sexual health results from multiple factors including hypogonadism, anxiety, systemic diseases, impaired body image perception and sense of loss of masculinity[13]. These complications in turn have a significant effect on the social lives of TC survivors in particular relationships with their partners. Spouses and partners especially those who began their relationship after TC diagnosis are poorly affected in terms of their quality of life and stress response symptoms[14]. In addition, long term side effects on career and financial wellbeing are also reported in TC survivors. Jobs and careers can be affected by late comorbidities like peripheral neuropathy and chronic cancer related fatigue[15]. A systemic review by Schepisi et. al. painted a grim picture of survivors, revealing higher incidence of joblessness, absenteeism and neuroticism especially in those involved in manual labour[12]. TC diagnosis and treatments, mainly chemotherapy, has been found to cause financial distress and financial burden on survivors[9]. Last few years we have seen growing interest in cancer survivorship, with numerous studies performed to look at different aspects of survivorship care. Yet, no specific guidelines or care models have been established. Our study is designed to give a comprehensive picture of difficulties faced by TC survivors. As we believe a multi-team, collaborative model of care will be the key to improve quality of life in survivors, our study results will be vital to identify areas of dire need and help set up the services required.

Many studies mentioned above are confined to a single country or even a city in some cases. Since, social, economic and educational parameters can vary profoundly in different areas, so can be the impact of cancer on survivors. So far, no such research has ever been performed in the Republic of Ireland which makes this the first study to look at the comprehensive picture of TC survivors of Ireland and determine the impact of TC on their socioeconomic health, sexual health and fertility. These results will also be helpful for other urban populations of UK and Western Europe.

2.1. Study Population

A questionnaire based survey was performed on the patients attending survivorship clinics in a tertiary care cancer centre in Ireland. Participants were known cases of testicular cancer in particular germ cell tumours and attending survivorship clinic after successfully completing at least 5 years of surveillance. Participants included patients who had received chemotherapy, surgery and/or radiation for the treatment of cancer. All participants were age 18 years or above at the time of diagnosis and assessment.

2.2. Ethics and good clinical practice

The study was granted approval in full by JREC (Joint Research and Ethics Committee) of Tallaght University Hospital, Dublin. Survey questionnaires were completely anonymised to protect patient identities. All staff involved in the study were trained in ethics, data protection and Good Clinical Practice. This study was conducted in compliance with EU and Irish ethics and data protection guidelines. Complete anonymity was maintained during data collection, processing and analysis. Informed verbal consent was taken from participants, since written consent was not required as the questionnaires were completely anonymised without any identifiers. All authors had complete access to the data and have contributed to conceptualisation, research methodology, writing and editing. Initial draft was written by first and last author.

2.3. Assessment

Patients attending testicular survivorship clinic were requested to fill out the survey questionnaire with complete anonymisation. The questionnaire was designed to assess the impact of testicular cancer and treatment on their fertility, sexual health and socio-economic aspects including job and careers. Infertility was defined as the inability to conceive after at least 1 year of unprotected intercourse with the partner. Participants were also asked if they attempted any medical procedures to assist fertility. We asked patients if they had any children before cancer and after cancer. Also we inquired if they had any issues with the fertility and if the issues lasted more than a year.

To assess the socio-economic impact, patients were asked to report the negative impact of cancer on their performance/productivity at work, job stability, career choices, personal financial goals and the relationship with their partner. The responses were recorded as one of the five options on the Likert scale including no effect, minor effect, moderate effect, significant effect and very significant effect.

Similar responses were recorded to assess the sexual health where the patients were asked to report the extent to which the cancer and the treatment affected their body image perception, ability to find new partner, libido, erectile function, ejaculation and satisfaction with the sexual activity.

2.4. Statistical analysis

All responses were recorded on the excel based spreadsheets. To analyse and report the responses, we calculated the percentages of total participants. Unanswered questions were reported as a blank response.

The study was conducted from January 2023 to November 2023 in testicular survivorship clinic of Tallaght University Hospital, Dublin, Ireland. A total of 83 patients completed our survey questionnaires.

3.1. Fertility

One third of the participants experienced biological parenthood after the diagnosis of cancer, whereas two thirds of them reported no children since the cancer diagnosis and treatment (Fig. 1). It is important to note that nearly half of them (41%) had children before the diagnosis as per survey responses. 17% of the participants reported having trouble with the conception, however, 63% did not report any issues and 20% didn’t answer. When asked if the fertility issues stayed for more than a year, 54% of them responded in negative but 14% were affirmative. Almost one third of the responders (31%) did not answer the question. We asked our participants if they sought any medical assistance for fertility issues, only 17% of them stated yes while 67% stated no and 16% chose not to answer.

3.2. Socioeconomic Impact

To investigate the socioeconomic impact on the testicular cancer survivors, we asked the participants about changes in five aspects of their livelihood since the diagnosis of cancer. These five parameters included performance/productivity in the work place, job security/stability, career choices, personal financial goals and relationship with their partners (Fig. 2). When asked about the performance or productivity at work, 58% reported no effect, 18% reported minor effect, 6% moderate effect while 8% reported significant and very significant affect. Regarding their job security or stability, the responses showed 72% reporting no effect, 6% minor, 7% moderate, 2% significant and 10% very significant effect.

Moving forward, we gauged the impact of cancer on their career choices as the majority of patients are diagnosed in the early years of their career. On one hand, 13% reported the effect as moderate and 10% reported as very significant effect, on the other hand, 71% of patients did not report any effect on their careers. With respect to the financial implications of cancer diagnosis and treatment, 57% responders noted no effect on their personal financial goals. On the contrary, 11% reported very significant, 4% significant, 14% moderate and 13% minor effect.

Participants were asked if cancer had any effect on their relationship with their partners, 64% reported no effect while the rest reported some effect. Of those who reported some effect, 27% reported minor, 33% moderate, 19% significant and 16% very significant effect. 96% of participants responded to question asking about any difficulty in finding a new partner since the diagnosis of cancer. The responses we analysed, revealed 80% of respondents did not notice any issues in this regard. Among the ones who experienced any difference, 43% had minor effect, 31% moderate, 31% significant while only 12% had a very significant effect.

3.3. Sexual Health

In this survey, the impact on sexual health was assessed in five different categories including libido, erectile function, ejaculation, satisfaction with sexual activity and body image perception (Fig. 3). Almost half of our patients (54%) did not report any effect on their libido. Although the rest of the participants stated otherwise with 6% stating very significant effect, 14% significant, 12% moderate and 13% minor effect. Erectile function reportedly remained intact in more than two third of the respondents (70%), while it was affected very significantly in 6% and significantly in 10%. Moreover, 6% reported minor and 8% moderate effect. Similar to erectile function, ejaculation remained intact in 71% of patients. Conversely, 11% described the impact as very significant, 4% as significant, 8% as moderate and 5% as minor. Approximately 40% of our testicular cancer survivors revealed adverse impact on satisfaction with sexual activity. Even with the majority stating only minor to moderate effect (54%) the rest (46%) experienced significant or very significant effect. Almost half of patients (53%) reported that cancer didn’t affect their body image perception. At the same time, it was affected to a minor extent in 18%, moderate in 17%, significant in 10% and very significant in 2% participants.

Our survey results are very similar to the studies conducted in other parts of Europe and US. This is likely due to similar medical practices, social supports and social dynamics. Spermon MD reported paternity after cancer in Norwegian TC survivors as 43% in 2003[16] which is higher than our survey result of (34%). This difference could be due to a general decline in fertility rates witnessed in Europe in the last couple of decades[17]. A better overview can be obtained through more studies comparing paternity rates with the general population. Percentage of patients seeking medical assistance for fertility remains the same in both studies (17%). The infertility rate (failure to conceive for more than 1 year) reported in our cohort of TC survivors (17%) is closer to the general population (16%)[18] but it is important to note that 16% of the participants did not answer the question.

In this study, 6% of patients reported very significant effect on their relationship with their partner. These findings are comparable to 5–10% divorce and break up rates reported previously[12]. A similar study in Yale University, USA, reported on the subjective impact of cancer on personal finances in survivors, [19]. 8.6% participants reported impact as “a lot” compared to 11% in our study who reported impact as “very significant”. However, the study in Yale was not confined to TC and included all cancer survivors. Regarding the impact on career and job, 8–10% of responders revealed very significant effect. Again these findings are comparable to similar studies performed previously[8, 20, 21]. For instance, a major survey based study conducted in Texas, USA, encompassing 4,363 cancer survivors, revealed 8.5% of survivors considered themselves unable to work since diagnosis[20]. This study included all cancer survivors yet this correlates with the results of our survey. Another study reported 67% of cancer survivors working full time jobs after 5–7 years post diagnosis, although some of them reported difficulties in carrying out their responsibilities [21]. Kerns et.al. also reported similar outcome after studying 1,815 TC survivors in 2020[8]. 10% of TC survivors were reported to be out of work with higher risk of unemployment compared to age-adjusted general population (odds ratio 2.67)[8]. They also reported relatively higher impact on survivors who received chemotherapy[8].

As most TC survivors are young at the age of diagnosis[1], body image perception has a major influence on their emotional, sexual and social wellbeing[22]. Rossen et. al. reported 17% of TC survivors experienced changed body image, which was associated with all parameters of sexual dysfunction as well[23]. However, among our cohort of survivors only 53% reported no effect while the rest reported some degree of effect. In the same study 24.4% survivors reported reduced sexual interest, which is close to our finding of 20% reporting significant and very significant effect[23]. A similar trend was seen with the erectile function and satisfaction with sexual activity. Our results show 18% reporting significant or very significant effect on erectile function compared to 17% reported by Rossen et. al. With regards to satisfaction with sexual activity, 18% of our participants disclosed major impact, compared to 14% in their study. Our participants response on the Likert scale regarding ejaculation shows a higher proportion of impact than reported in other studies. Among the respondents 15% describe the effect as significant or very significant, whereas, only 7% reported ejaculatory problems in the survey discussed above[23]. However, a systemic review by Schesipi et. al. estimates the proportion between 29–44%[12]. In TC survivors, ejaculatory problems are mostly related to retroperitoneal lymph node dissection and outcomes can be improved with nerve sparing techniques[24]. This variation could possibly be due to different trends of the surgical treatments in different countries and cancer centres.

A big majority (80%) of patients didn’t report any difficulties in finding a new partner, but unfortunately our survey failed to identify participants already in a stable relationships.

The participation in this study was phenomenal as almost all the survivors we approached, agreed to be a part of the study. One of the main reasons for the high recruitment was complete anonymisation of questionnaires. Participants were quite comfortable to answer these questions as they were not worried about traceability of data. We designed such anonymity to ensure participation as well as honest responses from our TC survivors. But, this anonymisation also proved to be a major limitation of our study. Due to anonymisation, we were not able to stratify our data based on the age at diagnosis, treatment types, stage of cancer at diagnosis, co-morbidities and social parameters e.g., employment status, relationship status and education level. This stratification could have been very useful to identify the risk factors for the major implications in the survivorship phase.

Another considerable limitation comes from the absence of any comparative cohort as a control arm. As highlighted before, it is pertinent to view this data considering the profile of the region covered by research. A range of different cultural, social, ethical and economical standards can often be found within the same country or even the same city. Before we generalise these findings, it is therefore important to know the standards within the study area. Nevertheless, our questionnaire was designed to assess the change in parameters before and after the diagnosis and treatment of the cancer, therefore, the results are at par with the data available from other studies.

In general, the results show the severity and areas of impact in TC survivors. Even after five decades of testicular cancer cure, we still lack policies, infrastructure and services to cater for the needs of TC survivors. We hope that this research will highlight the areas of survivorship which need attention by healthcare workers and physicians. Given the small scale of study and limitations described above, we strongly believe that more research in this area is needed. We recommend multicentre, pseudonymised and case-control studies for further insight into the subject of TC survivorship.

Patients with TC have now a remarkable cure rate utilising multimodality treatment regimens including orchiectomy, cisplatin based chemotherapy and radiotherapy. However, after their cancer has been cured, these patients face a multitude of challenges. These challenges include a range of physical illnesses causing prolonged chronic morbidity and also premature mortality of survivors. In addition to the physical suffering, there are significant social, sexual and economic consequences that TC survivors have to live through. These consequences come in the form of joblessness, disability leaves, early retirements, financial compromise, difficulty in maintaining and developing relationships as well as impairment in all aspects of their sexual health along with reduced fertility rates. In this study a significant number of survivors have reported their concerns regarding their compromised social health. Half of the participants reported deterioration in performance at work as well as personal financial goals. Similarly, worsening in sex drive and body image perception was reported by half of the respondents. While curating policies and guidelines for survivorship care, it is imperative to quantify and consider this notable socio-economic and sexual aspect of their health. We recommend a multidisciplinary, inclusive and holistic approach to address the issues of TC survivors.

Authorship

All authors contributed to the conception and design of the study, acquisition of data, analysis and interpretation of data, drafting the article, revising it critically for important intellectual content and final approval of the version to be submitted.

Author Contribution

MRK: Idea, literature search, data analysis, writing – draft, writing – review and editing, PKS: literature search, writing – review and editing AB: idea, writing – review and editing ARF: idea, writing – review and editing CL: idea, writing – review and editing UA: idea, writing – review and editing LC: critical analysis, writing – review and editing RMcD: idea, data analysis, critical analysis, writing – review and editing. All authors reviewed the manuscript

Acknowledgement

1. Cancer Trials Ireland, Dublin, Ireland

2. Tallaght University Hospital, Tallaght, Dublin 24, Ireland

3. University College Dublin, Belfield, Dublin 4, Ireland

Data Availability

All data generated or analysed during this study is included in this published article and supplementary files. (Supplementary 1 Datasheet)

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No competing interests reported.

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You are reading this latest preprint version

Impact of Testicular Cancer on Socio- Economic Health, Sexual Health and Fertility of Survivors – A Questionnaire based Survey

Status:

Version 1

Abstract

Purpose

Methods

Results

Conclusions

Figures

1. Introduction

2. Methods

2.1. Study Population

2.2. Ethics and good clinical practice

2.3. Assessment

2.4. Statistical analysis

3. Results

3.1. Fertility

3.2. Socioeconomic Impact

3.3. Sexual Health

4. Discussion

5. Conclusion

Declarations

Authorship

Author Contribution

Acknowledgement

Data Availability

References

Additional Declarations

Supplementary Files

Status:

Version 1