Psychological Distress and Sexual Dysfunction in Cancer Patients: Need for Psychological Intervention

Abstract

Extensive studies were reported about sexual functioning in various chronic health conditions like cardiovascular disease, diabetes, neuro-muscular and degenerative diseases having adverse impact on reproductive health and sexual quality of life. Sexuality is the fundamental and essential domain of human experience that could be damaged during the journey with cancer. Sexual dysfunction may appear due to systemic effects of cancer like organ damage, hormonal changes, psychological distress or severe side effects of cancer treatment. The biomedical causes of cancer are well known, and there is a growing interest in exploring the psychological factors that exacerbate distress and sexual dysfunction, adversely affecting the health of cancer patients. This article brings out deeper concerns like psychological distress and sexual dysfunction and discusses the various determinants for preserving sexual and psychological health among the growing community of cancer survivors. The article compiled facts, figures, and narratives of distress and sexual dysfunction among cancer patients through an extensive literature survey using search sites like Google Scholar, Pub Med, Scopus and Web of Science. This article aims to analyse the psycho-social factors for distress and sexual dysfunction in cancer patients, discuss the relevance of sexual health models and, the evidence-based psychological intervention focused on improving the health of cancer patients.

Introduction

Cancer is a disease of uncontrolled proliferation of cells without any differentiation. There is a breakdown of regulatory mechanisms in the cancer cell, and thus, they multiply and invade the surrounding tissue and organs. Much alike are the psychological symptoms where the mind gets infiltrated with self-debilitating thoughts that may lead to disharmony and dysfunction. Psychological distress is a state of emotional suffering associated with stressors and demands that are difficult to cope with. ¹ It indicates physical, mental or emotional exhaustion. Distress, depression, anxiety, disturbed sleep, delirium, other cognitive disorders and sexual dysfunction are the common symptoms reported by cancer patients. ²

Sexuality is an integral part of human functioning, a complex mix of mental, emotional, and physical signals that may be altered by life experiences such as abuse, ageing, various illnesses and treatment. Sexual dysfunction is commonly reported among individuals with chronic illness and seems to be associated with distress and reduced quality of life. ³ Sexual functioning depends on neurological, vascular and endocrine systems. As cancer patients are most vulnerable to sexual dysfunction and with known medical causes of physiological origin, there is a need to emphasise underlying psychological factors that may influence the quality of sexual functioning. The psycho-social factors affecting sexual functioning include family and religious background, sexual partner, interpersonal relationship, communication and individual characteristics such as self-esteem, self-concept or sexual schema. Sexual concerns may cause distress and disharmony. ⁴

The literature essentially indicates that sexual concerns are difficult to discuss with cancer patients. ⁵ As clinicians and medical staff lack sufficient knowledge or skills in this area, sexual concerns are not addressed. In the context of the conventional background in countries where stigma is associated with discussion of sexual concerns, it may be much more evident that they are not addressed directly as a part of communication. Sexual concerns may result in significant emotional distress, including depression, body image issues, stigma and negatively impact interpersonal relations. ⁶ There is a definite need to address sexual and reproductive concerns with medical and psychological measures that focus on improving cancer survivor’s quality of life. ⁷

Review of Literature

In the present work, a literature survey was done with the primary objective of understanding the magnitude of distress and dysfunction among cancer patients. The sexual and reproductive concerns and psychological distress in cancer are being explored using search sites like Pub Med, Google Scholar, Scopus and Web of Science to unravel the complex issues of cancer among men and women. The search strategy used main keywords like sexuality and Cancer, sexual dysfunction, psychological distress and the role of psycho-social intervention. The researcher searched variables in a combined manner, which ensured the relationship between different variables to know the association of those factors. Further, manual searching was employed to find authentic sources of recent related literature in India from 2010 onwards. The researcher discusses the existing sexual health models. A few older papers were also integrated into the argumentation process due to their rich theoretical contribution and clinical significance. The literature review includes psychological distress and sexual dysfunction in chronic illness, primarily focusing on the prevalence of sexual dysfunction in varied types of cancer. Psycho-social factors contributing to distress and sexual dysfunction and the significance of supportive psychological measures for improving functional aspects of cancer patients are discussed in the following section.

Psychological Problems and Sexual Dysfunction in Chronic Illness

Chronic diseases are defined broadly as conditions that last one year or more and require ongoing medical attention limit daily activities, or both. ⁸ As emotional and psychological disorders may complicate many chronic conditions, Turner and Kelly ⁹ identify a dynamic dimension of chronic diseases in their research, further explaining physical symptoms as a manifested expression of emotional dysfunction. Their study demonstrated that the deterioration of an established illness such as the development of pseudo-seizures in patients with epilepsy may be due to adjustment difficulties, depression or complex social and relationship issues. The study is one of the important indications for physicians to understand that the challenges of the psychological, social and cultural dimensions of illness and health are of significance, in addition to the knowledge of biomedical aspects of care is emphasised in this study. Indian researchers Balajee et al. ¹⁰ in their study evaluated psychological distress among chronic non-communicable diseases (NCD) like diabetes and hypertension in healthy subjects. In this cross-sectional study, 130 patients registered in rural health centres were compared with healthy subjects as a control group, and it was found that subjects with chronic diseases had a significantly higher proportion of psychological distress (50.8%) when compared to healthy subjects (35.4%). Another research by Nusbaum et al. ¹¹ observed that chronic illness and its treatment can harm sexual functioning and reproductive health. The interference mechanism may be neurologic, vascular, endocrinologic, musculoskeletal or psychological. Christensen et al. ¹² surveyed 4,415 participants, investigated associations between physical and mental health on sexual health, and found that physical health problems are associated mainly with sexual dysfunction in males. In contrast, mental health problems are related to female sexual dysfunction.

The research throws light on the aetiology of sexual dysfunction among individuals with chronic illness primarily of physiological origin such as neuropathy in diabetes, ¹³ and vascular problems in heart disease. ¹⁴ The study points out that medications such as anti-hypertensives may frequently exacerbate sexual dysfunction. Basson ¹⁵ reasoned that the impact on the activation of limbic and paralimbic regions for sexual, emotional and motor response is the mechanism by which sexual function is impaired in chronic neurological diseases. Likewise, chronic illness may cause restriction of movement in patients, they may become sexually inactive due to misconception about their ability and safety to have sexual relations. Kopel et al. ¹⁶ described that sexual dysfunction may arise because of body-image issues, low self-esteem and grief related to the diagnosis of their disease(s). Co-morbid depression is frequently reported in chronic illnesses describing various aspects of depression, including reduced interest, low energy, low self-esteem and anhedonia, which can adversely impact sexual function.

The Prevalence of Psychological Distress in Cancer

Cancer is a disease caused by an uncontrolled division of cells in a part of the body and may cause death compromising the body’s life support functions due to cellular damage. The period from cancer diagnosis to subsequent treatment series can be highly stressful. The theoretical explanation of malignant disease has been linked to stress theories. ¹⁷ The cellular stress leads to poorer recovery of damaged DNA, resulting in malignant alteration and cell apoptosis. The research examines how psychological stress is linked with the immune response. A study reported an association between psychological distress and mortality, analysed psychological distress concerning specific cancer mortality and confirmed that higher death rates are reported among the most distressed group for all cancer sites. ¹⁸

Mehnert et al. ¹⁹ conducted a monothetic analysis using a distress thermometer and reported that one in two cancer patients is significantly distressed. In this study, the distress thermometer checklist measured psychological distress in 3,724 cancer patients, which confirmed high levels of psychological distress (D.T.>5) in 52% of cancer patients. Ohnishi ²⁰ remarked about the prevalence and indicators of psychological distress that nearly half of the screened cancer patients have mental anguish, which may cause a reduction in patients’ motivation for treatment and decision-making and may even increase the incidence of suicide. ²⁰

A study conducted by Johnson et al. ²¹ analysed the frequency and nature of psychological distress in gynaecological cancer. They examined the effect of disease, treatment and demographic variables on the level of psychogenic pain and observed that a significant percentage (57%) of women of younger age and single were distressed. A detailed analysis of psychological distress in cancer from survivorship to end-of-life care reported the prevalence of psychological distress to be 24.5% in cancer outpatients, 16.5% in the general community and 59.3% in palliative care cancer patients. ²² The relevance of assessing psychological distress through survivorship including its prevalence, associated factors, and clinical implications helps identify unmet psychological needs that may lead to targeted and focused psychological support for cancer survivors.

The Burden of Sexual Dysfunction in Cancer

Cancer has been considered a ‘chronic’ rather than a fatal disease in recent years, with a shift and increased emphasis on quality of life issues of which sexuality is a leading aspect. ²³ Sexuality, a person’s ‘self-schema’, is an individualised view of themselves as a sexual being, encompassing biological, psychological, interpersonal and behavioural spheres. The diagnosis of Cancer followed by surgery, chemotherapy, radiotherapy, or endocrine therapy can profoundly affect both physical and emotional body image and sexuality. Sexual dysfunction is characterised by disturbance in sexual desire and disruptions in the psychological and physiological changes involved in sexual response. Low sex drive, erectile dysfunction, anorgasmia and the experience of unattractiveness may cause several problems and severe distress. Sexual concerns lead to significant emotional distress such as depression, body image issues, and stigma, negatively affecting personal relationships. ²⁴

Research on sexual dysfunction is extensively made in gynaecological cancer, ²⁵ prostate cancer, ²⁶ testicular cancer ²⁷ and breast cancer. ²⁸ The prevalence of sexual and reproductive concerns is reported in colorectal cancer survivors. ²⁹ The researcher registered that the significant issues related to genito-urinary malignancies are urinary incontinence, fertility and sexuality. A substantial proportion of young adult cancer patients suffer from sexual dysfunction ³⁰ ; Ljungman ³¹ explored sexual dysfunction and reproductive concerns in young women with breast cancer and found that the current endocrine treatment, previous chemotherapy, a negative body image, and a wish for children in the future predict a higher level of problems. The non-reproductive cancer patients equally expressed that illness had a significant negative impact on their sexual functioning and intimate relationships. Head and neck cancer impairs sexual functioning due to body image disturbance, depressive symptoms and also, have functional difficulties in speaking, swallowing, tasting and breathing. ³²

Psychological Distress and Sexual Dysfunction: Concomitant Symptoms of Cancer

A systematic review reported by Carreira et al. ³³ on adverse mental health outcomes in breast cancer survivors has reported statistically significant increased symptoms like frequency of anxiety, depression, suicide, neuro-cognition and sexual dysfunction when compared with women with no history of cancer. Psycho-social issues related to cancer affect all areas of life and may cause adverse consequences, such as the risk of infertility, intimacy, sexuality, increased distress and fear of recurrence. Demographic details such as age, gender, marital status, socio-economic status, religious and cultural beliefs, role stability, quality of relationships, coping, support system, and one’s knowledge, beliefs and attitudes about cancer are often good predictors of sexual functioning. Differentiating between primary and secondary causation factors of sexual dysfunction in cancer survivors, an older study by Griffith and Trieschmann ³⁴ explains that primary factors include organic changes, physical or physiological due to cancer or as a consequence of treatment, secondary factors are psychosocial. Either primary or secondary or both may impact sexual responses and fertility. Research studies such as carefully examined how breast cancer treatment effects primarily disrupt physical integrity, including the factors related to femininity, intimacy, sexuality, body image and feelings of attractiveness. ³⁵ Twitchell et al. ³⁶ analysed how sexual dysfunction in pelvic cancer in a male population negatively affects their self-esteem and body image and causes feelings of anxiety, depression and other mental health issues.

Research has reported that cancer patients frequently experience a fear of dying. ³⁷ There is a reduced sense of control, self-efficacy, performance anxiety, impaired self-esteem, hopelessness, worthlessness, altered body image, reduced energy, guilt and fear of rejection or abandonment. These symptoms can negatively impact one’s desire for sex and enjoy intimacy. Fears, disturbances in body image and changes in the partner’s role of caregiver responsibility may adversely affect feelings of sexuality in young adult cancer survivors. ³⁸ Self-blame, relationship discord or feeling that some past behaviour contributes can also negatively impact sexual functioning. Most of the research established an association between distress and sexual dysfunction. On the contrary, a cross-sectional study of 387 women with gynaecological cancer reported from a cancer hospital in Iran shows no significant correlation between sexual function and distress. ³⁹ Further in-depth analysis is required in this area by replicating such studies to assess the results.

Shankar et al. ⁴⁰ discussed the impact of cancer treatment on sexual health in an Indian scenario. Due to cultural barriers and religious beliefs, sexual dysfunction among women survivors of gynaecological malignancies is neither screened nor given supportive treatment. Research estimates that sexual dysfunction is a morbidity in more than 50% of women treated for cervix cancer. As primarily known, cytotoxic chemotherapy, radiation therapy, surgery and hormonal changes may cause irreversible menopause, scarring, and nerve damage, resulting in sexual dysfunction. There is a need to evaluate the drug history to determine the aetiology of female sexual dysfunction, review the phases of the sexual response, and carefully study the adverse impact of the physical and emotional stress of cancer diagnosis and treatment. Another study by Bhargava et al. ⁴¹ discusses cultural issues and existing mental health issues in the present modern era and traces the development of various psychotherapeutic techniques in India, and their study brings the Indian perspective on psychotherapy.

Sexual Health Models

Describing some relevant models for sexual health, such as medical understanding of sexuality based on a triphasic model by Kaplan ⁴² consists of desire, arousal and orgasm. Manne and Badr ⁴³ described a multi-compartmental model related to women in relationships governed by intimacy and sexuality. Perelman ⁴⁴ described the sexual response as a ‘tipping point’ influenced by psychological and physical factors that elicit a sexual response. In 2002, Basson et al. ⁴⁵ revised and constructed a circular model that defines female sexual function. Sexual health enhances other dimensions of one’s life and is of much significance. The physiological parameter of Kaplan was placed in the context of psychosocial needs, emphasising emotional intimacy as a drive towards sexual activity. By proposing emotional intimacy as a robust, interrelated and essential component of sexual activity, the significance of Psychological and Mental Health is incorporated into the concept of female sexuality. Annon ⁴⁶ remarked that a well-conducted interview for assessing sexual problems with the Kaplan model and PLISSIT model (an acronym for levels of permission, limited information, specific suggestion and intensive therapy) is used as a framework for sexual rehabilitation. Use of the PLISSIT model in the early stages can prepare patients for the expected sexual effects and begin the process to restore sexual function.

To fully comprehend a person’s medical condition, the Biopsychosocial model, which George Engel ⁴⁷ developed contends that psychological and social factors must also be considered in addition to biological factors. The fundamental idea of the Biopsychosocial model is its significance to the relationships among the three domains of physical, psychological, and social functioning—all of which are important in the development of health and illness. Mercadante et al. ⁴⁸ and Sadovsky et al. ⁴⁹ provide a brief overview of the biopsychosocial conceptualisation of sexuality after cancer and explain the interaction and interdependence of biological, psychological and social factors governing sexual health after cancer. The somatic changes in post-cancer sexuality that have a biological basis include erectile dysfunction, premature menopause, painful intercourse, low libido or sex drive, and sterility. Psychological factors such as distress, changes in body image, low mood and anxiety are common, which may lead to low desire, erectile dysfunction and poorer sexual self-esteem. As the partners share many intimate and sexual behaviours, social factors are essential in determining sexuality and intimacy in couples dealing with cancer effects. Mutual support, open communication, pre-treatment relationship satisfaction, and intimacy are included here.

Sexual health and well-being are important and essential dimensions of the health continuum. Another model that describes widespread challenges to sexual health and well-being among most cancer survivors is the sexual health Model by Keyes and Lopez. ⁵⁰ The model uses the period ‘Sexual Well-being’ (SWB), which makes a speciality of somatic, emotional, intellectual, and social elements of sexual being, whereas ‘Sexual disorder’ (SD) makes a speciality of the difficulty of performance and pertains to the sexual response cycle. Four quadrants are established, specifically ‘Struggling’, ‘Foundering’, ‘Languishing’, and ‘Flourishing’ based totally on the degrees of SWB and SD. Thus, emphasising the need to focus on ‘couple’ to attend to their sexual concerns or any other difficulties.

Role of Psychological Intervention

Psychological and mental health plays a crucial role during cancer survivors’ treatment and recovery. A study reported the psychological or psychiatric problems common in oncology patients are depressive disorder, adjustment disorder, post-traumatic stress disorder, sexual dysfunction, delirium and other cognitive disorders. ⁵¹ A literature review spanning more than two decades studied more than 50 randomised, controlled trials; group or individual therapy, therapist and non-therapist delivered, audio or videotape delivered, information and education, structured or unstructured counselling. The research includes relaxation training, CBT, communication, expression, guided imagery, visualisation, self-practice, or trainer shown to improve self-esteem and well-being. Evidence-based experimental studies reveal that psychological stress can affect a tumour’s ability to grow and spread. ⁵² On the contrary, emotional and social support can significantly reduce distress, depression, anxiety, disease and treatment-related symptoms among cancer patients. ⁵³

Discussing mental health care in oncology, Caruso and Breitbart ⁵⁴ analyse the psychosocial burden of cancer and emphasise evidence-based interventions for distress reduction and supportive care. Vodermaier et al. ⁵⁵ observe transient mood disturbances among cancer patients that can surface anytime during the disease trajectory, thereby recommending mental health screening, consultation and rehabilitation. Vodermaier emphasises psychosocial counselling, behavioural intervention, and supportive-expressive group therapy as effective interventions in reducing cancer patients’ emotional distress. A systematic review on screening for psychological distress on patient outcomes in cancer by Meijer et al. ⁵⁶ analysed majorly on 14 random control trials which focus on treating distress that indicates pharmacological, psychotherapy and collaborative care interventions for distress reduction. Feldstain et al. ⁵⁷ analysed emotional concerns, lack of information, ongoing psychosomatic burden and burnt out in patients and caregivers of advanced-stage cancer. As the psycho-social factors majorly contribute to psychological distress, the study emphasises interdisciplinary palliative rehabilitation. Taghizadeh et al. ⁵⁸ evaluated psychological distress experienced by cancer patients and recommended supportive and palliative care to reduce pain and enhance the functional status of cancer patients. ⁵⁸ In a study by Andersen et al. (2002), the researcher conducted a clinical trial with 227 post-surgery breast cancer patients to ascertain whether psychological intervention for cancer patients is also related to improved health. The results were statistically significant, and a path model revealed that behaviour change was influential, and distress reduction was an essential mechanism to improve health and functional status significantly. ⁵⁹

Wiltink et al. ⁶⁰ conducted a systematic review consisting of 23 studies from 2000 to 2019 that throws light on patient-reported outcomes on dimensions of women’s health-related quality of life, including symptoms and functioning in cervical cancer. These findings describe that most symptoms worsen during the treatment phase and further improve during the post-treatment phase. In contrast, symptoms like lymphedema, menopausal symptoms, and sexual worries develop slowly and persist for a more extended period after the curative treatment of cancer. These findings indicate the need to focus on more research on sexual and reproductive health interventions. A study presented the domains for assessment such as sexual schema, sexual behaviour, response cycle and related sexual dysfunctions, proposing a process model for the occurrence and maintenance of sexual difficulties. ²⁴ For the therapeutic approach, along with the medical treatment plan, individual/couple counselling is very essential as it is possible that an emotional component exists, which may need deeper exploration and attention. Brief counselling, known as the backbone of rehabilitation, includes patient education about genital anatomy, sexual response cycle, impact of cancer and treatment on sexual functioning. ⁶¹ The interventions focusing on psycho-education, reassurance, improving communication and finding alternate ways of expressing affection are very relevant to improving sexual functioning.

Brotto et al. ⁶² developed, and pilot-tested psycho-educational intervention targeting female sexual arousal disorder (FSAD), the most common distressing sexual symptom in gynaecological cancer. In this research, 22 women with early-stage gynaecological cancer attended psycho-educational intervention that combined elements of cognitive and behavioural therapy with education and mindfulness training, which reported a significant positive effect on sexual desire, arousal, orgasm, satisfaction, depression and overall well-being. Andersen ⁶³ described a four-step approach from an older study from the cognitive behavioural literature that includes acknowledgement of feelings, acceptance of feelings independent of what it is, verbalisation of the feeling(s) when appropriate and active choice of something to do about the feeling(s). Another study conducted by Carter et al. ⁶⁴ on endometrial cancer patients describes the effectiveness of interventions targeting sexual or marital relationships and found that sexual functioning was notably better with quality of relationship, body image, quality of life and negatively associated with fear of sex.

A study evaluates Fex-can, a web-based psycho-educational intervention of 12 weeks, comprised of modules that include information with educational and behaviour change content, exercises, illustrations and a short video of cancer patients sharing their experiences. ⁶⁵ This psycho-education intervention model addresses sexual dysfunction and fertility-related distress, anxiety, depression, body image and health-related quality of life for younger adults diagnosed with cancer.

Healthcare models and paradigms should evaluate the best method for sensitive sexual assessment, distress management and evidence-based integrative sexual health and functioning. Future research needs to focus on what treatment components are most effective with which type of psycho-social and sexual problem. An integrative Biopsychosocial model is much more relevant for managing sexual dysfunction remedying the physiological and psychosocial impact of cancer and its treatment. In the Indian context particularly, embracing the Biopsychosocial model of sexual health that can be individualised or tailored to the specific problems and contexts of the patient is of much significance, to sensitively address the specific needs of cancer survivors.

In addition to this, knowing the significant role of the partner, and emphasising the need to include the partner’s psychological response to the illness, studies on partners of patients being diagnosed with cancer are also explored in the present study. A study by Wittmann ⁶⁶ elucidates an important aspect of partners’ distress which has not been discussed much. Men diagnosed with prostate cancer and their partners agreed that partners provide emotional and logistical support and pointed out the need for further research and healthcare provisions that will support couples in prostate cancer survivorship towards improved mental health and health outcomes. Another study by Vermeer et al. ⁶⁷ focused on assessing experiences with sexual dysfunctions, psycho-sexual support, and psycho-sexual healthcare needs among cervical cancer survivors and their partners. The study reported that although many patients and partners have experienced psycho-sexual healthcare needs, that are seldom reported, raising a valid point that psycho-sexual support should go beyond physical and sexual aspects, and include topics such as sexual distress, relationship satisfaction, and partner perspective. Thus, offering a more practical approach and assurance for providing information about sexuality to both cancer patients, and their partners.

Conclusion

There have been studies and ongoing research about sexual dysfunction and distress in cancer patients. However, the incomplete division of sexuality and fertility remains unresolved, mainly affecting the growing communities of young adult cancer survivors. This is a matter of grave concern as this is likely to affect their health and quality of life adversely. In the Indian scenario, within the close cultural and ethical boundaries, sex and related dysfunction remain taboo. There is a dearth of Indian studies and a pressing need to conduct Indian studies which are culturally sensitive and specific to the context, subjected to an intensive analysis and in-depth exploration. The binding domain of distress and dysfunction needs to be sensitively addressed and sensibly attended to ascertain the care and cure of cancer patients. Many scientific studies reported that psychological support networks complement the treatment process and hasten the curing process. ⁶⁸ The present study is of increasing relevance addressing the ‘psychological factors’ governing sexual functioning among cancer-affected patients and inventing an ‘integrated approach’ for treatment to address their distress and sexual dysfunction. This study will further advance research on devising holistic interventions for improving the Sexual Quality of life of cancer survivors. This may involve not only psycho-education related to sexual health and intimacy with the partner but also the psychosocial perspective to dispel several myths and misconceptions the above.

Relaxation patterns required in order to continue with their biopsychosocial aspects of sexual health may also be portrayed using relevant psychological interventions such as visual imagery, Yoga Nidra, and mindfulness-based relaxation techniques. The Indigenous Indian relaxation therapy, with a body-mind link approach known as ‘Yoga Nidra’, is a psycho-therapeutic exercise that includes a particular set of steps for guided meditation and visualisation, which inspires a relaxation reaction inside the body and mind. Cancer sufferers can benefit immensely from using Yoga Nidra as a therapeutic approach. ⁶⁹ ‘Yoga Nidra’ or ‘yogic sleep’ is a ‘Pratyahara approach’ in which the distraction of the thoughts is restrained, and the thoughts go to a deep, relaxed state, known as a ‘hypnagogic country of sleep’. This induces a relaxing impact on the body and mind and has profound blessings in treating chronic diseases, psychological issues, and psychosomatic illnesses.

In a country like India, where sexual functioning is also looked at as an art and science and also as a sacred act between consenting partners, educating patients with cancer about the need for a better understanding of sexual functioning and sexual health through psycho-social intervention modules and couple therapy would be a relevant step. Improvement of communication through intervention such as couple activities to improve couple time, and togetherness on a regular basis may help to restore the intimacy in relationship and improve quality of life. De-stigmatising the need for communication among couples about their sexual functioning-related concerns and overcoming psychological barriers may help in the broader context of improving holistic health.