Pierre Bondil1
(1)
Urologist-Oncologist-Sexologist, Centre hospitalier Metropole-Savoie, Chambéry, 73011, France
Pierre Bondil
Email: pierre.bondil@ch-metropole-savoie.fr
6.1 Introduction
In spite of modern-day openness, sexuality has not received much attention in medical care [1]. This is especially damaging in the process of cancer. While many patients and couples suffer from the sexual side effects of cancer treatment, the majority of health care professionals (HCPs) find it difficult to address this area [2]. One of the reasons for not addressing sexuality is because many HCPs do not know who should do what, when, and how it should be done [3]. Just as in other areas of medical care, proper guidelines have to be developed as a mandatory step for dealing with the clear need for both information and communication and also to develop care and cure strategies for the various disturbances of sexual health and intimate life of the patient and their partner.
For these reasons, we have gradually followed in France a path to create standards of care. This chapter will describe the main points of this French clinical practice guideline (CPG) that has been developed for dealing with intimacy and sexuality in cancer patients [4]. Alongside is the specific area of oncofertility, for which a guideline has been developed as well. However, in this chapter we will only deal with the “oncosexuality” CPG.
In cancer, many CPGs focus on the specific decision-making process after the cancer diagnosis is made. Our CPG rather describes best general standard of care that should be followed all along the cancer care continuum (CCC): (www.openclinical.org/guidelines.html):
· To outline the minimum common prerequisite that each HCP should have in terms of knowledge and skills, regardless of the primary cancer diagnosis/treatment
· To be able to screen the sexual/intimate difficulties but also the vulnerabilities of the patient and the couple according to their age, the type of cancer, and the treatment at each stage of CCC
· To organize the prevention/treatment of sexual/intimate dysfunctions induced by a given cancer and its treatment
· To clearly define the role and the field of interventions of each of the various health care professions, whatever the cancer, the treatment, or the CCC
· To reduce inappropriate variations in clinical practice by distinguishing between simple/complex problems for optimizing a more efficient use of resources
The scientific evidence for this topic is very limited. As this multithematic focus cannot be analyzed using usual recommended methods, this CPG is mainly based on a strong expert/professional consensus explaining its low-level rating (D grade 3) (www.openclinical.org/guidelines.html).
Remarks: According to National Comprehensive Cancer Network CPGs definitions, it may be graded as II A, that is, adequate for daily practice as the majority of current cancer CPGs are II A or B (JCO 2011;29:186-91). The guideline development group on “Cancer, sexual and intimate life” was a multidisciplinary group (including oncology physicians, cancer nurses, sex therapists, and psycho-oncology professionals) and the peer review accomplished during two successive French national workshops at the French-speaking supportive oncological care association (www.afsos.org) in Paris (October 2010 and October 2011) and at the 3rd Symposium of ISSC (International Society for Sexuality and Cancer) in Lyon (October 2012).
6.2 Why Develop Standards of Care/Clinical Guidelines on Cancer and Sexuality?
There are three main areas where explanations are found toward an increasing need for developing guidelines.
6.2.1 Epidemiology
The current data point out why this problem can no longer be ignored or neglected [4]:
· 40 % of all cancers directly affect the “sexual organs,” with prostate cancer being the most prevalent for male and breast cancer for female. In fact, there may be a higher incidence particularly in cases of pelvic or “relationship sphere” (as stoma) cancers.
· Cancer prevalence is increasing, explaining why 1 out of 10 adults, that is, the patient and the partner, is potentially involved since the large majority (male > female) of patients are part of a couple.
· The ongoing ageing of the general population explains its increasing incidence and demand to preserve the sexual (male) and/or intimate (female) life as important components for both well-being and quality of life of ageing people.
All the large national surveys show:
· A real, sudden, and prolonged negative impact of cancer and/or its treatment on sexuality and/or intimacy that concerns almost two thirds of the patients and couples
· A strong request from survivors (individuals and associations) as almost all of them wish to be informed about the sexual consequences of cancer treatment and a large majority declares as important that they can discuss it
How do couples and patients cope with these problems in daily life? Studies have shown that about one third of patients/couples adapt without complaints, one third asks for simple solutions, and one third wishes for more specialized support/care [3] (Fig. 6.1).
Fig. 6.1
Diagrammatical estimation of cancer related sexual needs in real life
6.2.2 Medical Advances
Several major medical advances explain why more and more cancer patients are cured or why they move into a status of chronic disease. Nowadays, a majority of cancers have a good or intermediate prognosis thanks to an earlier diagnosis/screening. This positive development explains the gradually increasing population of cancer survivors. Consequently, therapeutic strategies must also focus on quality of life and well-being for patients and couples of all ages [5, 6]. That should include sexual and intimate life for a large majority of them, obviously with special attention for the young and for all who are in a sexual relationship. At the same time, sexual medicine has progressed and nowadays for many sexual dysfunctions there are efficient solutions available.
6.2.3 Changes in Society
The cure and care of the wide range of somatic, psychological, and relational consequences of cancer and its treatment is a major societal demand [5]. The mantra could be: “Add years to life and also add life to the years.” Presently, Cancer Plans recommend both rehabilitation of sexual/intimate difficulties through a better HCP awareness for the psychosocial dimension and a mandatory access to adequate supportive care. Sexual health and sexual/intimate life can be considered as relevant parameters for evaluating both global health and quality of life. Unfortunately, in spite of medical solutions, patient/couple demands, and good awareness of HCP, there is still a paradoxical lag between identified needs and unmet needs [2, 3]:
· The topic of sexuality and intimacy is still not routinely addressed in the health professional/patient relationship and often even completely ignored.
· Both HCPs and patients/couples are not sufficiently comfortable to discuss it, owing to taboos, false ideas, medical “resistance” and lack of appropriate skills and knowledge.
· Specific sexual health care is barely visible, with no participation among the cancer care disciplines and nearly no resources.
6.3 Objectives of the French Guidelines “Cancer, Sexual Health and Intimate Life”
These Clinical Practical Guidelines [4] with standards of care for health care professionals aim to optimize individual care plans at two different levels. The individual level deals with what directly occurs at the interpersonal level between professional and patient, whereas the collective level deals with the processes between the patient, on the one hand, and the care profession on the other (including the mutual interprofessional connections).
6.3.1 The Individual Plan
This aspect deals with what occurs in the direct contact between the health care professional and the patient or the couple. This key point requires:
· Sensitization of all HCPs who take care of cancer patients to make them aware that sexual health and intimacy are neither a luxury nor a taboo. It is a right of patients and partners to be informed and when relevant to be treated, rights that are defined by the World Health Organization and the World Association for Sexual Health [1].
· Sharing a common language and clinical judgment to better detect the patient/couple difficulties or vulnerabilities and to distinguish between simple problems and complex problems that need more specialized advice.
· An “oncosexological” adapted response aimed to improve care of sexual difficulties experienced by patients and their partners.
6.3.2 The Collective Plan
This part focuses on the wider approach of care. Proper care needs more than well-trained and well-acting professionals. The skills of the various professions and professionals have to be coordinated and adapted to what could be called the personalized cancer care continuum (CCC) [5].
This collective plan focuses both on the cancer care team with its interdisciplinary organization, but also on the connections with facilitating organizations from outside. To obtain an efficient coordination between all the concerned HCPs is a major challenge, particularly in this specific domain of supportive cancer care [3].
· To integrate this care dimension early into daily practice during the CCC, that is, from the diagnostic phase to the posttreatment and survivor phases. Here, extra attention is needed for the teenager and young adult cancer patients.
· To organize according to each HCP level of responsibility, the steps that can be taken in prevention and in dealing with the treatment-induced disturbances in sexuality and intimacy at each stage of the CCC.
· To support the HCPs when addressing problems related to sexual health and sexual/intimate quality of life. This is especially important in the beginning of the process when the HCPs who dare to address sexuality can be turned down or even rejected.
6.4 Cancer and Sexuality: For Whom?
Delivering appropriate information to both patients and their partners is a medical obligation [1, 3, 5–6]. This ethical, moral, and legal requirement explains why all patients and couples have to be informed about the potential impact and consequences that cancer and its treatment can have on their sexual health and intimate life.
A huge majority of patients and relatives wish to have specific information (Fig. 6.1). But this demand is often masked as they expect the HCP to approach the subject.
All HCPs should participate in giving information or referring the patients to a valid information source.
This applies to patients of all ages and in whatever stage of the disease. Even for the palliative phase when emotional considerations are assumed to prevail over the physical aspects, we cannot predict the intimate expectations of the patient or the partner.
Almost all patients and partners may have concerns about sexuality, whatever their age (and whatever the HCP thinks about the sexuality of others). Even if sexuality seems neither mandatory nor present, there are wide variations between individuals and among couples. From the age of puberty, young patients/couples are most in need of information. Even in the case of childhood cancer, the parents can worry about the potential consequences for their child’s psychosexual development. On the other side of the spectrum are the really aged that also should not be excluded. Sexual life is not at all exclusively reserved to the healthy, the young, and the beautiful [1, 3]. Although sexual expression can change with age, it often remains an important parameter of well-being.
Relatives: The role and importance of partners of sick people is too often ignored during the CCC. The potential positive role of helping health care persons cannot be neglected. Their own questions and frustrations must be also investigated to maintain a healthy couple dynamic and to improve the therapeutic alliance of the couple and their treatment adherence.
6.5 Cancer and Sexuality: For Which Cancer and for Which Treatments?
It is not only in the cancers of the sexual/genital organs that sexuality and intimacy can be impacted. In fact, the diagnosis with its fear and shock, the treatment with its side effects and the social changes can all negatively influence sexual function, sexual identity, sexual relationship, and intimacy [1, 3–4]. Whatever the stage or the prognosis, the presence of (real or imagined) sexual/intimate needs or disturbances should be investigated, because only the patient and the partner are the ones who decide what their priorities are in this intimate domain. All the major cancer treatments can have a negative impact on sexuality and intimacy. Sometimes that influence is more severe and sometimes less so; sometimes prolonged, and sometimes just for a short while.
Whereas systemic approaches like chemotherapy, targeted therapy, and hormone therapy nearly always have a relevant influence, independent of the cancer site, this is less the case with surgery and radiotherapy, because their influence depends on the location (and the extent), with genital area, breasts, and face as very relevant sites.
All phases of the sexual response (desire, arousal, and orgasm/ejaculation) can be separately affected, with much variety depending on the treatment approach [4]. The treatment will also determine the moment of the impact with, for example, immediate and strong effects after surgery and gradually developing effects over time after radiotherapy.
Understanding the different sexual side effects at different moments in the CCC is relevant knowledge for the patient and the couple. That can make them also more motivated to be screened for sexual function and to be open to measures preventing side-effects and after-effects in the area of sexual health and intimacy [2–3, 5–6].
6.6 Which Sexual Problems?
All the components of human sexuality (biological, psychological, relationship, and sociocultural) may be involved and potentially impaired (Fig. 6.3). Any HCP should understand the basic sexual physiological response of both males and females [1], and then determine which sexual disorder may be expected with a specific cancer or cancer localization or cancer treatment. This will assist in optimizing information, reassuring and treating the patient or couple in case of a simple problem, as well as organizing adequate referral to the right supportive health care service or professional in case of more complex problems.
For patients and couples that have sexual insecurities, anxiety, or questions, it usually suffices to supply simple adapted information that will reassure the majority.
One roughly can say that the highest sexual disturbances for male are found in erectile dysfunction and for female in dyspareunia, whereas for couples the biggest sorrow is experienced in disturbed sexual desire [4].
There is a large diversity of psychological and socio-environmental parameters that negatively or positively may impact either sexual health or intimate/sexual life [1, 4] (Fig. 6.2):
Fig. 6.2
Main expected sexual/intimate dysfunctions according to the physiological phases of the sexual male/female responses
· Personality, self-esteem, self-confidence, adaptation abilities, relationship to others
· Sexual biography, couple dynamic, sexual/intimate life reality and wishes, available partner
· Severity and duration of medical aftereffects (e.g., fatigue, pain, sleep disorders, physical scars, body image) and also of other outcomes (e.g., financial, work, relationship)
6.7 Cancer and Sexuality: When to Tackle It with Patient and Couple?
Tackling sexual disturbances is a relevant step and mandatory to achieve a personalized CCC [3].
A person-centered approach seeks at each stage of the process to find a good balance between oncological priorities and quality-of-life priorities for both patient and HCP [5–6] (Fig. 6.3).
Fig. 6.3
Diagram showing when to tackle and what to do during the CCC
In this Clinical Practice Guideline [4] there are several important focuses for the daily practice:
· To anticipate and to systematize space, time, and support for both evaluation and information so that the discussion on the area of sexuality and intimacy is facilitated.
· In oncosexology, information requires a special strategy. It has to be given with progressive and repeated announcements, depending on the treatment and the stage. Usually, during the phase when the diagnosis and the treatment are discussed, sexual concerns are not the first priority.
· For each category of health care professionals, the field of interventions has to be clearly defined and also legitimized.
· It has to be clear that the aim is not to transform every HCP into a sex therapist. However, as many as possible HCP’s should develop a positive (and possible pro-active) approach towards sexual health and should understand the importance of a good quality of sexual life all along the cancer care continuum.
6.8 Cancer and Sexuality: Who Should Address It?
The response (or nonresponse) and attitude of HCPs can have a significant positive or negative impact. Every HCP working with cancer should be aware that sexual health and intimate life represent for many people an important aspect of quality of life [1, 3, 5], which indicates that for proper humanistic care a proactive approach is wise.
Ethically, it is the role and the duty of every HCP who is directly involved in care, to adequately provide information on the possibility of sexual/intimate changes and ensure that the patient and his or her partner has access to adequate supportive care [3]. HCPs should adopt a proactive attitude looking for fears or dysfunctions and addressing them or referring to identified health professionals. This is relevant for all HCPs who are in contact with the patient, but in different degrees and for different reasons:
· For general practitioners and medical/oncological specialists because of treatment decisions and side effects, prevention, and treatment
· For psychosocial professionals (included the sex therapist), because of the social, identity, and relational consequences
· For HCPs specialized in areas of the body with explicit sexual implications (e.g., speech therapist for head and neck cancer, stoma care nurses).
There are also the nonprofessional caregivers. Although the role of the partner is very relevant, influencing him or her can only be done through other means. Patient associations can be a very constructive group, bringing the topic of sexuality/intimacy to the patients. These groups can be very useful in placing the topic on the agenda of the patients or of the professionals, and also bringing it to the attention of the media.
6.9 Cancer and Sexuality: How to Speak About It?
Just as in other areas of care, when discussing sexuality and intimacy, one has to remain within the limits of the law and within one’s own professional competence [1, 3–4]. By using simple language, and offering proper information and well-timed reassurance, already much help can be given. It is important to point out that many problems are not very complex and reasonably easy to resolve:
· When discussing private aspects of disease and treatment, a safe place and sufficient time are very relevant in developing a patient-centered contact.
· When it appears difficult to address the topic, one could consider seizing various opportunities that arise in the course of the cancer care continuum (e.g., when contraception is addressed, body care, life hygiene, or prosthesis).
· Besides investigating impairments in sexual health and intimate life (and not only sexual function), it is wise to look also for eventual masked demands, fears, and questions.
It can help to learn what patient and partner already have heard from colleagues, brochures, Internet sources and “friendly good advice.” Also in the “treatment phase,” various sources of information and care support for patient and couple should be considered and recommended, for instance, respectable Internet sites, scientific societies, patient associations, and patient support groups.
6.10 What Is the Place of the “Oncosexologist”?
The oncosexologist is a highly qualified physician, psychologist, sexologist, physiotherapist, relationship counselor, or nurse, who has acquired additional and specific skills/competences in this particular domain. He or she is an HCP trained to address and take care of simple and complex sexual/intimate disturbances [1]. He or she is able to work across disciplines by cooperating with the worlds of oncology, supportive care, and sexology for responding to its several missions and tasks [4]:
· To inform and to train the various oncology professionals and disciplines that are not at home in sexual matters and eventually as well the sexology/sexual medicine professionals that are not at home in the cancer area
· To make visible the sexual health resources and expertise that are present in the health care setting and connect patients with unmet sexual needs to professionals who can deal with those unmet needs
· To treat the clinical cases where the biopsychosocial complexity demands highly qualified expertise, particularly in case of psychological or relationship dysfunctions
Ideally, for good cancer care, every bigger cancer unit and territorial cancer care network should have such an oncosexological professional or resources directly available, integrated in the unit, or the cancer care network and the role for this professional laid down.
Conclusions
Sexual and intimate life is a key issue for cancer patients and their partners as well as an important challenge for cancer survivors during the entire CCC. A majority does not receive the optimal information, care, and cure they need from their oncology providers. Sexual health has yet to be fully integrated into oncology care. Clear knowledge and skills gaps concerning oncosexuality require a careful effort of information/training well adapted to HCPs in contact with cancer patients/couples. To establish both routine and equal access to referent oncosexual resources/services in this supportive care domain requires developing standards of care and CPGs that become a cornerstone of quality care. However, this mandatory step is not sufficient. To break the silence, to legitimize the demand, and to organize better health care access are complementary key points for responding to the strong unmet demand from patients, couples, and HCPs. In spite of methodological limitations, these first published transversal CPG appears very useful for correcting important gaps in cancer care. By routinely assessing the supportive care needs that both the patient and the couple have in the domain of sexual health and intimacy.
References
1.
http://www.worldsexology.org/resources/declaration-of-sexual-rights/.
2.
Park ER, Norris RL, Bober SL. Sexual health communication during cancer care: barriers and recommendations. Cancer J. 2009;15:74–7.CrossRefPubMed
3.
Bondil P, Habold D, Damiano D, et al. The personalized health care process in oncosexology: a new health care offer in the service of both patients and health care professionals (in French). Bull Cancer. 2012;99:499–507.PubMed
4.
Bondil P, Habold D and the French AFSOS Group. Cancer, sexual and intimate life (in French): www.afsos.org/referentiel.
5.
Balogh EP, Ganz PA, Murphy SB, et al. Patient-centered cancer treatment planning: improving the quality of oncology care. Summary of an Institute of Medicine workshop. Oncologist. 2011;16:1800–5.CrossRefPubMedPubMedCentral
6.
Hood L, Friend SH. Predictive, personalized, preventive, participatory (P4) cancer medicine. Nat Rev Clin Oncol. 2011;8:184–7.CrossRefPubMed