Sexual Quality of Life, Self-Compassion and Desire to Use Onco-Sexology Support by Cancer Patients

doi:10.21203/rs.3.rs-1597249/v1

Background: Cancer and its treatments may affect the sexual quality of life (SQoL) of cancer patients, but the use of onco-sexology support (OSS) is relatively rare; it is therefore important to identify the intrinsic factors associated with health behaviours.

Aim: To evaluate the role of self-compassion (SC) on the desire of cancer patients to use onco-sexology support (DUOSS), according to their SQoL.

Methods: Five hundred patients were contacted by mail and asked to complete questionnaires on their SQoL, SC and DUOSS.

Outcomes The primary outcome was the role of SC on DUOSS as a function of SQoL, and the secondary outcome was the relationship between SC, SQoL and DUOSS

Results: Five hundred patients were contacted and 96 (19.2%) took part in the study (mean age 54.2 years, 93.7% female). The participants were divided into two groups: Group 1, patients reporting a satisfactory SQoL (n=41); and Group 2, patients reporting an unsatisfactory SQoL (n=55). Significant differences were observed in SC and DUOSS, and in several demographic (marital status) and clinical (type of treatment) characteristics between G1 and G2. A positive association was found between SQoL and SC, and between SQoL and DUOSS, and there was an indirect link between SC, SQoL and DUOSS.

Clinical implications SC has an important role in SQoL and interventions should be developed to target SC over the course of care of cancer patients.

Strengths and Limitations The strengths of the study are the large number of participants and the fact that this is the first study on SC and its possible role in DUOSS. The study is limited by the sample composition, which consisted mainly of women, limiting the external validity of the results. In addition, the body image of the patient or the sexual satisfaction of the partner were not evaluated.

Conclusion: SC is a contributing factor to DUOSS in cancer patients with a poor SQoL and interventions should focus on SC from the start of anti-cancer treatment to improve SQoL and encourage the use of OSS.

Cancer

Health-Related Quality of Life

Management

Self

Self Compassion

Sexology

Sex Counselling

The World Health Organization [1] defines sexual health as being ‘an integral part of health, well-being and quality of life (QoL) in its entirety. It is a state of physical, emotional, mental and social well-being in relation to sexuality, and not simply the absence of diseases, dysfunctions or infirmities’. Sexuality, including sexual health and intimate life, corresponds to a life force (affective, conjugal, emotional, relational, identity, social…) [1], a right of humans [2]. It is a valid and pertinent determinant of well-being and QoL for the majority of people, including those suffering from cancer [3].

Cancer and its treatments affect the three important pillars of sexuality, namely biological, psychological and relational [4]. The VICAN 5 study [5] demonstrated that sexual problems are frequent and affect all cancer patients 5 years after diagnosis. However, these problems appear to be more frequent when the cancer directly affects the genital area [6]. Cancer-related sexual morbidity, a term introduced by several authors [7, 8], is present.

Specialist support in onco-sexology is therefore of interest. However, health professionals do not often hear a request for onco-sexology support (OSS) from their patients, even though it may be an unsatisfied need during their treatment [7–9]. Furthermore, if patients do request OSS, the request may be poorly expressed. This problem is rarely addressed, even though 40% of cancers affect the genital organs or areas important to relationships (e.g., oral cancers (lips, oral cavity, larynx), or stomas) [5]. Several factors are responsible for this situation [10], including organizational difficulties, the financial constraints of healthcare providers, or the lack of training of healthcare workers [1, 10–14]. It is therefore important to understand the mechanisms at play so that patients can, if they wish, request OSS, so as to legitimize their word during the entire care pathway [4].

The request for OSS is recognized as self-management behaviour and, in the context of onco-sexuality, as ‘supportive care’ [13], which corresponds to ‘all care and support necessary for sick people, in parallel with specific treatments when they exist, for the whole length of a serious illness’. Although the aim of onco-sexuality [4, 13] is to help the patient (and their partner) better endure the adverse effects and sequelae of cancer and its treatment on their intimate life, there is currently no universal definition of self-management [15]. In the case of a chronic disease, self-management corresponds to: (i) all daily activities that a person needs to carry out to control or reduce the impact of the disease on their health [16]; (ii) the learning and putting into practice of the skills necessary to live a life that is actively and emotionally satisfactory [17]; (iii) the capacity of a person to manage their symptoms, treatment, physical and psychosocial consequences, and the changes in lifestyle inherent in suffering from a chronic disease [18]. This corresponds, in short, to the behaviours and attitudes that individuals adopt to make them a player in their own health. Harris [19] speaks of self-care behaviour [20] to qualify these proactive behaviours and attitudes. These contribute to the capacity of an individual to manage and maintain satisfactory levels of psychological, social, spiritual and physical needs [21, 22], which are important to improve the QoL of patients with cancer [23].

Among the factors thought to contribute to self-management behaviour [21, 22], self-compassion (SC) (or compassion towards oneself) appears to play an important role [24]. SC is defined as a caring and comprehensive attitude towards oneself, which can be developed, notably in difficult moments, to alleviate the experience of suffering [25, 26]. It is the capacity to treat oneself with the same kindness and compassion that one would give to others in the same situation [26]. This attitude favours the better management of difficulties [27] and events perceived as threatening to health [28]. Studies in oncology report that SC is negatively associated with anxiety, ruminations and psychological distress [20], and positively associated with hope [29], psychological adjustment [30] and QoL [31]. A study by Zhu et al. in 2019 showed that SC is also a protective factor for symptoms of stress, anxiety, depression and fatigue in cancer patients [32]. These results can be explained by three components of SC: (i) self-awareness, which helps individuals become aware of their thoughts and feelings without judgement [33]; (ii) self-kindness, which allows individuals to counteract automatic self-critical thoughts, to concentrate on the resources available and their strengths rather than their shortcomings and weaknesses [34]; and (iii) common humanity, or the recognition of not being alone in experiencing difficulties, reducing the feeling of solitude, which helps individuals accept their limits instead of being embarrassed and thinking they are inadequate [35].

Thus, SC fosters a more adapted and useful attitude, allowing an individual to better control their emotions and to adopt more adapted behaviours [36, 37]. Previous authors have shown that a person’s attitude towards him/herself was associated with more acceptance and self-orientation and to proactive engagement in health behaviour [38, 39]. An individual who has SC is more capable of establishing concrete objectives to improve their health and well-being [24] than an individual who has little SC. In the case where this competence can be acquired and developed [40], the demonstration of a link between SC and the desire to use OSS (DUOSS) will favour interventions targeting SC in order to allow patients with cancer to establish self-management behaviour.

Based on previous studies demonstrating the role of SC on health behaviour [19], the aim of our study was to evaluate the role of SC on DUOSS by cancer patients, depending on their sexual QoL (SQoL). The secondary aim was to examine the relationship between SC, SQoL and DUOSS, including the intrinsic factors associated with health behaviours that could contribute towards the prevention and treatment of sexual problems associated with cancer and its treatments. The identification of these factors will enable carers to introduce preventive and awareness-raising interventions in order to improve the experience of the disease and overall QoL.

Study population and design

Between June 2021 and July 2021, 500 individuals were contacted by mail by the League against Cancer, Ardèche, and asked to participate in an online study via the Qualtrics platform. The only inclusion criteria were: age ≥18-years and individual suffering from (or having suffered from) cancer. There were no exclusion criteria.

The study conformed to the General Rules on Data Protection (Règlement Général sur la Protection des Données; RGPD) and the Data Protection Act (Loi Informatique et Libertés), and the data collected were strictly anonymized. The study was based on the principles and rules of the Rapport Belmont [41], the Code of Conduct of Researchers of Caverni [42] and the Declaration of Helsinki [43]. All participants were free to participate and gave their informed consent before taking part in the study.

Data collected

Sociodemographic and medical data were collected including: age, sex, family (marital) situation, demographic and professional category, type of cancer and treatment(s) received, and date on which the cancer diagnosis was made.

All participants completed online versions of three validated questionnaires measuring the following criteria:

SQoL This was measured using the Sexual Quality of Life questionnaire [44, 45], validated in French in its mixed version [46, 47] (Cronbach α=0.93). This self-administered questionnaire consisted of 18 items (e.g. ‘Sexual activities no longer give me pleasure’), evaluating the impact of sexual dysfunction on QoL, including self-worth, emotional well-being and relationship problems. Individuals could respond on a 6-point Likert scale ranging from 1 (Completely disagree) to 6 (Completely agree). The higher the score, the better the SQoL.

SC This was measured using the validated French version of the Self-Compassion Scale (SCS) [48, 49]) (Cronbach α=0.86). This scale measures SC and the following six dimensions: self-kindness (e.g. ‘I try to be loving towards myself when I am suffering’), self-judgement (e.g. ‘I disapprove and judge my own faults and deficiencies’), common humanity (e.g. ‘When things go badly for myself, I see these difficulties as being part of life that everyone experiences’), isolation (e.g. ‘When I think of my deficiencies, I feel different and cut off from the rest of the world’), mindfulness (e.g. ‘When something upsets me, I try to keep my emotions balanced’) and over-identification (e.g. ‘When I feel ill, I have a tendency to be obsessed and to focus on everything that isn’t going well’). Individuals were invited to respond to 26 items on a 5-point Likert scale ranging from 1 (Almost never) to 5 (Almost always). The higher the score, the more the individual shows SC.

DUOSS This was evaluated using a single dichotomous question (yes/no): ‘Would you like to use OSS’ (support for sexual problems that could be the result of the cancer?)

Outcome measures

The primary aim of this study was to evaluate the role of SC on DUOSS, as a function of SQoL. The secondary aim was to examine the relationship between SC, SQoL and DUOSS.

Statistical analysis

The distribution of the data was analyzed in order to distinguish the patients according to their SQoL. This distribution was normal (P<0.01, Shapiro-Wilks test) and revealed two distinct groups of patients: Group 1, with a satisfactory SQoL; and Group 2, with an unsatisfactory SQoL (Figure 1). To compare the two groups, the Chi² test was used for nominal variables (sex, marital status, professional category, living environment, distance from home to care centre, type of cancer, type of treatment(s) received, DUOSS) and the Student’s t test was used for interval variables (SC, self-kindness, self-judgement, common humanity, isolation, mindfulness, over-identification).

Pearson correlations were carried out to evaluate the relations between SC and SQoL. The relation between SC/DUOSS and SQoL/DUOSS was measured using the Chi² association test. Finally, logistic regression analysis was performed to determine the predictive relations between SC, SQoL and DUOSS, and to test a mediation model.

For all statistical tests, the level of significance was P<0.05. All statistical analyses were carried out using SPSS version 22 (Statistical Package for Social Science).

Characteristics of the study population

Ninety-six individuals (six male and 90 female; mean (± SD) age 54.2 ± 10.6 years, range 26‒84) were included in the study. The majority of the patients lived in the Ardèche (n = 37), Yvelines (n = 33) and Drôme (n = 16) departments. Mean (± SD) time since the diagnosis of cancer was 3.6 ± 2.7 years; range 0.5‒12). No participant stated that they had received OSS (consulted an onco-sexologist for sexual problem(s), had a sexology consultation as a couple, participated in support groups for sexual difficulties linked to cancer, attended education meetings concerning the impact of cancer on sexuality).

Analysis revealed two groups of patients according to their SQoL. Group 1 (G1) consisted of 41 patients (mean age: 55.2 ± 11.8 years) with a satisfactory SQoL (SQoL ≥ 3.5) and Group 2 (G2) consisted of 55 patients (mean age: 53.5 ± 9.7 years) with an unsatisfactory SQoL (SQoL < 3.5). Mean time since diagnosis of cancer was 3.6 ± 2.8 years for G1 vs. 3.5 ± 2.7 years for G2. No significant difference in age or time since cancer diagnosis was observed between the two groups.

The sociodemographic and clinical characteristics of the study population are shown in Table 1. Several significant differences were observed between the two groups. The proportion of patients who were married or in a civil partnership was significantly greater in G2 than in G1 (P = 0.030), the proportion of patients who had undergone surgery was greater in G2 than in G1 (P = 0.044), and more patients had received hormone therapy in G2 than in G1 (P = 0.001).

Table 1

Sociodemographic and clinical characteristics of the two groups of patients
Variable			G1 (N = 41)	G2 (N = 55)	P
Sex	Female		37	53	ns
Sex	Male		4	2	ns
Marital status	Married/Civil partnership		21	42	*
	Single		11	6
	Widowed/widower		3	1
	Cohabiting		1	4
	In a couple but live alone		5	2
Professional status	Farmers		1	1	ns
	Craftsmen, shopkeepers, business leaders		1	2
	Executives and higher intellectual professions		13	16
	Intermediary professions		3	5
	Employees		13	11
	Workers		0	0
	Retired		9	11
	No professional activity		1	9
Living environment	Urban		23	29	ns
Living environment	Rural		18	26	ns
Distance from home to care centre	< 30 km		19	29	ns
	30‒100 km		17	18
	> 100 km		5	8
Type de cancer	Oral (mouth)		0	1	ns
	Lung		1	1
	Digestive		5	2
	Breast		29	45
	Urological		0	3
	Gynaecological		2	0
	Other (myeloma, cerebral, glioblastoma, haematological…)		4	3
Type of treatment received	Surgery	Yes	29	48	*
	Surgery	No	12	7	*
	Chemotherapy	Yes	33	44	ns
	Chemotherapy	No	8	11	ns
	Radiotherapy	Yes	29	45	ns
	Radiotherapy	No	12	10	ns
	Hormone therapy	Yes	14	38	***
	Hormone therapy	No	27	17	***
	Immunotherapy	Yes	3	7	ns
	Immunotherapy	No	38	48	ns
	Other (auto-graft…)	Yes	2	0	ns
	Other (auto-graft…)	No	39	55	ns
: P ≤ 0.05; **: P ≤ 0.001

Self-compassion

Significant differences were observed between the two groups in terms of SC (t(94) = 3.04; P = 0.001), as well as in the dimensions self-kindness (t(94) = 1.89; P = 0.031), self-judgement (t(94)=-2.93; P = 0.002), common humanity (t(94) = 2.32; P = 0.011), isolation (t(94)=-1.95; P = 0.027), mindfulness (t(94) = 1.98; P = 0.025) and over-identification (t(94)=-2.74; P = 0.003). In comparison to G2, G1 (with a satisfactory SQoL), had higher scores for SC, self-kindness, common humanity and mindfulness (Table 2). Conversely, G2 (with an unsatisfactory SQoL) had higher scores for self-judgement, isolation and over-identification. The same analyses carried out only on the sub-group of individuals who were married/in a civil partnership did not reveal any significant differences when compared to the results for the sample as a whole. Given the low frequency of other marital situations, our complementary analyses only involved these two categories, married/civil partnership.

Table 2

Self-compassion (SC) and dimensions of SC in the two groups
Dimensions and sub-dimensions	G1 (N = 41)	G2 (N = 55)	P
Self-compassion	3.15 (0.68)	2.71 (0.70)	≤ 0.001
Self-kindness	3.02 (0.84)	2.68 (0.90)	≤ 0.05
Common humanity	3.30 (0.77)	2.88 (0.98)	≤ 0.05
Mindfulness	3.21 (0.69)	2.89 (0.85)	≤ 0.05
Self-judgement	2.98 (0.92)	3.52 (0.87)	≤ 0.01
Isolation	2.68 (1.05)	3.10 (1.04)	≤ 0.05
Over-identification	2.99 (1.01)	3.55 (0.99)	≤ 0.01
All values shown are mean (SD)

DUOSS according to the group

Analysis of the data revealed a significant difference in DUOSS between the two groups: the majority of the patients in G1 did not want OSS, while half of the patients in G2 wanted OSS (χ²= 6.05; df = 1; P = 0.014) (Table 3).

Table 3

Desire to use onco-sexology support (DUOSS) in the two groups
Variable		G1 (N = 41)	G2 (N = 55)	P
DUOSS	Yes	10 (24.4)	27 (49.1)	≤ 0.05
DUOSS	No	31 (75.6)	28 (50.9)	≤ 0.05
Values shown are n (%)

Role of SQoL, SC and DUOSS

Correlation analysis indicated that SQoL was more positively associated with SC (r = 0.33; P < 0.001) than with DUOSS (r = 3.09; P = 0.002).

Mediation analysis showed that DUOSS was partially mediated by SQoL (considered here as a continuous variable, without distinguishing G1 and G2). The following indirect effect was demonstrated: SC x SQoL x DUOSS = 0.051 (0.027), P ≤ 0.05 (Fig. 2). More precisely, SQoL was retained as a significant predictor, indicating that patients with an unsatisfactory SQoL had a 1:3 chance of expressing a DUOSS compared to patients with a satisfactory SQoL (OR = 0.327 [95%CI: 0.11–0.53], Wald (1) = 5.55; P < 0.02, z = -2.36 [95%CI: -2.045; -0.188].

The aims of this study in cancer patients were to evaluate the role of SC on DUOSS, depending on SQoL, and to examine the relationship between SC, SQoL and DUOSS.

Several demographic and clinical differences were observed between patients with a satisfactory SQoL (G1) and those with an unsatisfactory SQoL (G2). The number of patients who were married/in a civil partnership, who had undergone surgery, or who had received hormone therapy was significantly higher in G2.

Data in the literature suggest that marriage creates a direct form of social support [50, 51]. Familial relationships, particularly committed (marriage), will guarantee better life satisfaction and more meaning in people, with life as part of a couple offering material resources, better health and a greater possibility of social encounters [52]. Given that sexuality has a special place in the family arena, when cancer affects a couple, the support of the partner is crucial [53]. The SQoL of patients in G2 of our study was less satisfactory than that in G1, even though the latter group had a higher proportion of individuals who were married/in a civil partnership. The simple fact of having a partner or cohabiting with someone does not necessarily signify that the other person offers sympathetic and comprehensive support. The distress provoked by cancer and its treatments appears to have a negative impact on the quality of the relationship between couples [54]. This relationship quality has been demonstrated to be determinant of sexual function in patients with breast cancer [55]. In agreement with the recent conclusions of Foudali et al. [56], this result can be explained by the fact that the SQoL evaluated by the patients did not correspond only to their own SQoL. The patients also took into account the sexual satisfaction of their partner. Thus, it would have been interesting to control for the SQoL of the partners of the patients in the current study. The nature of the attachment of the patients could also partly explain this result. Favez and Cairo Notari [57] showed that the type of attachment of a couple affected the development of vulnerability to the consequences of cancer treatment, notably concerning body image and sexual activity. Finally, the fact that sexual relations were reported prior to the disease could also partly explain these results and suggests that we should be prudent with regard to the stereotypes associated with a couple (kindness, support, etc.).

The two groups in our study differed significantly in terms of the type of treatment received. Patients in G2 were more likely to have been treated by surgery or hormone therapy. These types of treatment are therefore associated with a greater change in SQoL. Among the anti-cancer treatments, surgery may cause anxiety, depression, body changes and a poor QoL [58]. As a consequence it affects sexual function and satisfaction [59]. Similarly, hormone therapy is reported to have a significant negative effect on sexual function in the literature [60]. These results are similar to those of Foudali et al. [56] who reported that among the demographic and clinical factors, the type of treatment was a predictive factor of sexual satisfaction. It is important not to confuse the type of treatment with the time since diagnosis, but as indicated in the Methods section of the current study, our two groups did not differ in this factor, and the differences observed cannot therefore be explained.

Our results also demonstrated significant differences between G1 and G2 in terms of SC and its components, as well as DUOSS. Patients reporting a satisfactory SQoL (G1) had more SC, self-kindness, common humanity and mindfulness, and less self-judgement, isolation and over-identification than patients in G2. This result is similar to the conclusions of Michael et al. [61]: the absence of sexual dysfunction was associated with greater SC. SC had an increased positive effect on the well-being of people with poor health (e.g., those suffering from cancer) [62].

Showing SC by being more affectionate and understanding towards oneself and the difficulties encountered improves an individual’s satisfaction with life and the capacity to confront the different circumstances that accompany a chronic disease [63]. The dimension common humanity allows an individual to understand that their suffering is part of the human experience and contributes to the development of feelings of connexion and social support [38, 64]. This experience counteracts the feeling of isolation which may develop following the diagnosis of cancer [64]. Thus, SC allows a person affected by a chronic disease to direct their attention and behaviour to self-care and to live a normal life [65]. This could explain the fact that there were less patients in G2 than in G1 with a DUOSS, even though they were more susceptible to it.

The final part of our results demonstrated a partial mediation between SC, SQoL and DUOSS. As mentioned previously, several authors have already demonstrated the predictive character of SC on sexual satisfaction [66], reporting that a low level of SC will cause sexual distress. SC has been shown to be a strategy of adaptation with favourable effects on well-being and behaviours linked to the disease [27, 63]. SC is an attitude, without judgement, but sympathetic towards one’s own pain and suffering. Not identifying with negative thoughts and emotions, also called decentering, allows a person to understand situations or emotionally adverse feelings objectively and to deal with them in a more adaptive way [67]. Finally, SC incorporates the idea that difficult moments are part of the human experiment. SC will therefore improve SQoL by allowing a person to look kindly on him/herself and his/her difficulties. Santerre-Baillargeon et al. [68] demonstrated that SC is beneficial to help couples deal with vulvodynia in terms of psychological, sexual and relational adaptation. SC offers the patient the possibility of making decisions on their own need for support. Sympathetic individuals recognize when they are suffering and are caring towards themselves at those times. Terry et al. [24] showed, in a series of three studies, that people with proven SC were more motivated to remain in a good state of health and to ask for medical care for health problems than those who lacked SC. The indirect effect SC, SQoL, DUOSS demonstrated in our study shows the presence of other variables in the model tested (i.e., representations of the disease, body image,…).

The study has two main strengths. The first concerns the number of study participants. This was large given that the survey was only available online for 1 month. The second is that it is the first study, to our knowledge, on SC and its possible role in DUOSS. The study also has several limitations. First, the sample was composed mainly of women, which limits the external validity of the results. Additional studies on men are required to generalize our findings, particularly as some studies have shown that men report a greater need for professional interventions on sexuality than women [69]. Second, an evaluation of the sexual satisfaction of the partner would enhance the study, as would an evaluation of the type of attachment of couples. Third, the literature recognizes the importance of SC as a protective factor in patients at risk of problems of body image [29, 70]. It also demonstrates that sexual function is closely linked to body image: in general, a positive body image is associated with good sexual satisfaction [71, 72]. It would be interesting to evaluate body image in a future study. Finally, studies on the evaluation of intrinsic factors should be continued in order to complete the model tested in the current study. It could be completed by an evaluation of mindfulness, which plays a role in SQoL [73–75]. The identification of these factors will help to develop effective interventions to improve the SQoL of patients and to encourage the use of OSS. As reported by Liska et al. [76], these interventions would support self-care, which will help to autonomize and prepare patients to manage their own health care. An autonomized patient will be more proactive in looking for solutions to any difficulties encountered [77, 78]. Interventional studies could confirm the impact of such interventions on both SQoL and DUOSS.

The results of this study show that SC has an important role in SQoL. Interventions should be developed to target SC during the pathway of care of cancer patients. These interventions could be based on programs that have already been shown to give good results on mental health and proactive behaviour in patients with cancer, such as the Mindful Self-Compassion Program for adult cancer patients [79] or Cognitively-Based Compassion Training [80]. The limitations of this study encourage the continuation of research on this subject in order to identify the processes mediating the relation between SC and DUOSS.

Conflicts of interest

None

Funding

The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.

Competing Interests

The authors have no relevant financial or non-financial interests to disclose.

Author Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Sophie Lantheaume, and Ladislav motak. The first draft of the manuscript was written by Sophie Lantheaume and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Ethics approval

The study conformed to the General Rules on Data Protection (Règlement Général sur la Protection des Données; RGPD) and the Data Protection Act (Loi Informatique et Libertés), and the data collected were strictly anonymized. The study was based on the principles and rules of the Rapport Belmont, the Code of Conduct of Researchers of Caverni and the Declaration of Helsinki.

Consent to participate

All participants were free to participate and gave their informed consent before taking part in the study.

Content to publish

The authors affirm that participants provided informed consent for publication of the results

Acknowledgements

The authors thank the MSH-Alpes de l’Université Grenoble Alpes, the SCREEN platform, and the Cancer League.

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No competing interests reported.

Sexual Quality of Life, Self-Compassion and Desire to Use Onco-Sexology Support by Cancer Patients

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Abstract

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Introduction

Materials And Methods

Results

Discussion

Conclusion

Declarations

References

Additional Declarations

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