Introduction

Coping with treatment-related sexual problems and their impact on relationships has been reported as a one of the top priorities of long-term prostate cancer survivors [1, 2]. These findings are supported by earlier quality of life research on prostate cancer treatment-related erectile dysfunction (ED) [3–5], men’s unhappiness with this side effect and their feelings of loss, diminished masculinity, and social viability [6–8].

Increasingly, the literature has shifted its focus towards addressing not only the man but also the partner. Partners have reported their own distress at the loss of the sexual relationship after the man’s prostate cancer treatment [9, 10]. They have also expressed frustration about unmet sexual and support needs [11]. This is not surprising; patients’ sexual functioning is correlated with partners’ sexual interest, sexual satisfaction, and general life satisfactions [12]. In a related way, patients’ sexual bother has been correlated with partners’ perception of low marital affection [13].

The importance of including partners in addressing prostate cancer survivors’ sexuality is intuitive as sex is an experience preferably engaged in with another person. Furthermore, sexuality is a complex experience with biopsychosocial components: function, individual experience, and relationship [14]. Couples’ misalignment after prostate cancer treatment is a complicated matter in which communication, shared perspective and sexuality play an important role [15–18]. Previous reviews of sexual health and intimacy interventions in prostate cancer reported inconsistent effects on outcomes such as sexual function and relationship satisfaction [19, 20]. A review by Walker recommends building interventions with the recognition that some degree of ED is inevitable for most men; in this context, recognizing the importance of fostering realistic expectations, normalizing grief and helping couples adjust to a new sexual normal is necessary [21•]. Most of the existing literature focuses on heterosexual couples. Some of the interventions reported below included a small number of gay couples although it is not clear that intervention content unique to their experience was included.

As we present this review, our understanding of critical variables within this paradigm is still evolving. The goal of the review is to summarize the research on interventions designed to support couples’ sexual recovery after prostate cancer, examine outcomes for which these interventions were effective, and identify variables that appeared to be important to consider. We make recommendations for future intervention research.

Method

A systematic review was performed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines [22] (Fig. 1). The electronic databases PubMed and PsychInfo were searched for articles describing sexual health interventions in prostate cancer, using terms “sexual,” “intervention,” “prostate cancer,” “couples,” “intimacy,” “trial,” “pilot,” and “support.” The search generated 68 abstracts. Included studies were either pilots or randomized controlled trials (RCTs). Studies were excluded if they were irrelevant to the research question, if they were designed to improve couple emotional intimacy and coping with distress, but did not include a sexuality component [23–25]. We also excluded reviews, but used them for reference [19, 20, 21•].

Fig. 1
figure 1

Article identification for the review

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Results

The review findings are presented in Table 1. Of all 11 accepted studies, 4 were pilot studies and 7 were RCTs. Early intervention studies tended to take a psychoeducational approach and offered ED treatments. In these interventions, partners were invited to participate, but the focus was on the patient, with the partner seen as an adjunct, rather than as a participant with his or her own needs. Later studies were more likely to include partners as equal participants in the interventions. Some later studies incorporated behavioral assignments.

Table 1 Couple interventions to support sexual health of prostate cancer survivors
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Pilot Studies

Davison and colleagues evaluated a couple-based educational/counseling session for men referred to a sexual rehabilitation clinic [26]. The education included information about the sexual side effects of prostate cancer treatment, the use of ED treatments, and expanding sexual repertoire. Partners were invited, but not required to participate. Patients’ sexual function was assessed by the International Index of Erectile Function (IIEF) [27]. Partners’ sexual function was not assessed. Patients’ and partners’ feelings towards each other were assessed by the Positive Feelings Questionnaire (PFQ) [28] at baseline and 4 months later. Ninety five patients, of whom 35 were couples, completed the 4-month follow-up questionnaires. Patients’ mean sexual function improved significantly, but erectile function remained in the dysfunctional range (5.04 vs. 8.07). At both baseline and 4 months, partners’ feelings about the patients were significantly less positive than the reverse. Both patients and partners were very satisfied with ED treatments. Very few patients arranged for a follow-up visit.

A feasibility pilot by Hampton and colleagues evaluated a 3.5-h workshop for heterosexual couples aimed at improving knowledge about sexual changes following prostate cancer treatment, understanding of their own values and expectations, and exposure to skills such as sensate focus exercises to enhance sexual intimacy [29]. Couples were asked to develop a plan to maintain sexual intimacy. Couples’ sexual function, activities, and interest, measured by the Sexual Function Questionnaire (SFQ [30], were assessed at baseline and after 4 months. Change scores and comparison with the waitlist group were calculated. Couples completed a Commitment to Change (C2C) [31] form to define sexual goals which were reviewed at 4 months. The intervention met the criteria for feasibility; patients and partners reported that the negative impact of treatment on sexuality decreased and partners’ sexual interest and sexual satisfaction increased. Thirty-two percent of patients and 33% of partners in the intervention implemented successfully at least one of their goals.

Wittmann and colleagues evaluated the feasibility and effectiveness of a 1-day psychoeducational group intervention for couples on average 3 years after surgical treatment [32]. Multidisciplinary presentation on the side effects of surgery for prostate cancer and rehabilitation was followed by breakout sessions for men and partners. Twenty-six heterosexual couples were recruited and participants completed surveys at baseline, 3 months, and 6 months post-intervention. Outcomes evaluated were effect on knowledge of sexual rehabilitation, use of sexual aids, frequency of sexual activity, couple communication [33], importance of erections and help seeking [34], and satisfaction with the intervention. High satisfaction confirmed that a group approach for couples was feasible. Only two outcomes were statistically significant at 6 months post-intervention: couples’ knowledge of sexual rehabilitation increased and partners’ view moved to thinking that men can have satisfying sex lives with ED.

Walker and colleagues [35] evaluated the effect of a psychoeducational 3.5-h workshop for men treated with surgery or radiation for localized prostate cancer and their partners on their relationship satisfaction, measured by the Revised Dyadic Adjustment Scale (RDAS) [36] and sexual function, measured by the SFQ [30]. The workshop focused on providing information about post-treatment sexuality and rehabilitation, value clarification, and intimacy-maintenance skills. Each couple developed a plan for their recovery, measured by the C2C [31]. Fifty-nine participating couples were evaluated at baseline and 2 months after the workshop. There was no significant difference in sexual function. However, there was a significant improvement in the couples’ relationship satisfaction.

Randomized Controlled Trials

Several RCTs have been performed to evaluate the effect of couple-oriented sexual health interventions on outcomes such as sexual function, relationship satisfaction, use of sexual aids and others. The interventions employed a variety of methodologies, including face-to-face individual or group counseling sessions, telephone counseling, or internet modules.

A study by Geisler and colleagues compared the effect of nurse-led symptom management with combined face-to-face and phone counseling sessions to usual care, offered within 6 weeks of completion of primary therapy and continued monthly for 6 months [37]. Ninety-nine couples were randomized. Quality of life was assessed by the Prostate Cancer Quality of Life (PCQoL) measure [38], depression by the Center for Epidemiologic Studies Depression Scale (CES-D) [39] dyadic adjustment by the DAS [36], and general QoL by Short Form Health Survey (SF-36) [40]. The participants in the intervention evidenced reduction in the effect of ED on their lives and in cancer worry. There were no changes in depression or dyadic adjustment. However, patients in the intervention group who were depressed at baseline reported greater bother at the end of the study, suggesting that depression might diminish the effectiveness of an intervention or, conversely, might reinforce depression in patients who are already depressed.

In a study evaluating the role of sexual counseling, Canada and colleagues randomized 84 prostate cancer survivors to attending 4 counseling sessions with or without their partner [41]. Sessions focused on education about sexual side effects of prostate cancer treatment and rehabilitation, skills training for better communication. Both the intervention and control groups were provided with cognitive-behavioral strategies to improve intimacy. Patients’ and partners’ sexual function, relationship satisfaction, and psychological distress were assessed with the IIEF [27], the Female Sexual Function Index (FSFI) [42], the DAS [36], and the Brief Symptom Inventory (BSI) [43], respectively, at baseline and at 3 and 6 months after the intervention. The use of ED treatments was also assessed. There was no significant difference between the groups in any of the outcomes measured. Analyzed prospectively, counseling did improve patients’ distress and use of ED treatments as well as temporarily patients’ and partners’ sexual function. The study was significantly underpowered and the arms were not well balanced: partners of the arm with men who participated without partners had significantly better sexual function than the partners in the couple arm at baseline. As both arms were given “homework,” the difference between the intervention and control groups may have been diminished.

Titta and colleagues assessed the ability of couples’ counseling to improve adherence to the use of intracavernosal prostaglandin injections (ICIs) for men with treatment-related ED after non-nerve sparing surgery [44•]. Fifty-seven men with partners were randomized into two groups: ICI prescription only or ICI plus couple-based ICI-education and short-term dynamic counseling. Adherence with the use of the ICI was significantly higher in the counseling group. The counseling group also had a higher involvement of the partner in the administration of the ICI.

Chambers and colleagues randomized couples adjusting to surgery-related side effects into three arms, comparing usual care versus peer-based telephone counseling versus nurse-led telephone counseling [45••]. The primary goal of the study was to assess the impact of the interventions on patients’ use of ED treatments. Additionally, patients’ and partners’ psychosexual outcomes, dyadic adjustment, sexual care needs, patients’ sexual confidence, and patients’ masculine self-esteem were assessed with the IIEF, FSFI, RDAS, Supportive Care Needs Survey [46], Impact of ED [47] and Masculine Self-Esteem Scale (MSES) [48], respectively. Satisfaction with the intervention was also measured. The intervention included education about the side effects of prostate cancer treatment, information about erectile aids, couple communication, ways to counteract negative thoughts about cancer, support, and tip sheets. One hundred forty-four couples, recruited before and after treatment, completed the study. The intervention by both nurses and peers significantly improved the use of ED treatments compared to usual care. However, sexual function, dyadic satisfaction, and male self-esteem were not improved.

Schover and colleagues [49] evaluated the ability of an online approach to sexual recovery to provide support to patients and their partners. Thirty-six couples were randomized to face-to-face counseling, internet counseling, or waitlist control. An additional 71 couples who were too physically distant to enroll in the trial were offered the internet counseling option outside of the randomization. Patients’ and partners’ sexual function and dyadic satisfaction were measured with the IIEF [27], FSFI [42], and DAS [36], respectively. Face-to-face and internet-based interventions were equally effective. Authors found that both the face-to-face and internet interventions improved male sexual function while relationship adjustment, distress, and female sexual function did not change. At 1-year follow-up, male sexual function improvement was predicted by the partner’s normal sexual function and younger age, the use of ED treatment, and the patient’s completion of the intervention.

Walker and colleagues evaluated an intervention for men treated with ADT and their partners, aimed at improving their intimacy, dyadic satisfaction, and maintenance of sexual activity [50••]. Twenty-seven couples were randomized to usual care versus education including reading material about the management of side effects of ADT and one face-to-face session focused on individual couples’ concerns. Couple dyadic satisfaction and couple intimacy, including sexual intimacy were assessed with the DAS [36] and Personal Assessment of Intimacy in Relationships questionnaire (PAIR) [51]. Level of couple sexual activity was also assessed. The researchers found no significant differences in effect sizes of the two arms with respect to dyadic satisfaction and couple intimacy. However, a significantly greater percentage of couples in the intervention group reported sexual activity 6 months later than the control group (21 vs. 4%). The authors concluded that the intervention may have helped couples prepare for coping with ADT which in turn helped them maintain intimacy.

A feasibility RCT, conducted by Robertson and colleagues, tested a six-session manualized psychosexual intervention for couples [52]. The sessions included psychoeducation about prostate cancer treatment-related sexual side effects and rehabilitation, identification of priorities, sensate focus exercise training, and support. Forty-three couples participated. Outcomes were sexual bother, as measured by the sexual domain of the Expanded Prostate Cancer Index Composite (EPIC) [53], depression and anxiety, as measured by the Hospital Anxiety and Depression Survey [54], and family functioning, as measured by the Systemic Clinical Outcome and Routine Evaluation (SCORE 15) [55]. The study met feasibility criteria. Men in the intervention arm had a clinically significant improvement over baseline in sexual bother at 4 months, but did not sustain the effect by 6 months. Men in the control arm did not report improvement. Depression, anxiety, and family functioning did not change for either group.

Discussion

This review has focused on 4 pilot studies and 7 RCTs. To date, the evidence from these intervention studies concurs with previous reviews which suggest that in terms of sexual function and relationship outcomes, the effects continue to be small and inconsistent. Pilot studies are small by definition and the RCTs have, by and large, also had small numbers of participants. Only the studies conducted by Chambers [56] and Davison [26] were potentially powered well enough to produce significant results.

Couple-based sexual health interventions significantly improved outcomes such as adherence to the use of sexual aids [41, 44•, 56], knowledge attainment and partners’ attitude to ED [57], partner sexual interest [29], and maintenance of sexual activity despite treatment-related erectile dysfunction [50••]. Of significance is also the discovery of the feasibility of novel ways of delivering sexual health interventions for couples: online interventions can improve access to sexual health expertise [49]; not only professionals but also partners as well as peers can provide support for men’s use of pro-erectile aids [44•, 45••]; and providing psychosexual sexual health interventions for couples in a group setting can not only leverage peer support, but is a scalable and cost-effective way of educating couples about sexual recovery and rehabilitation [32].

Sexual function has tended not to improve through these interventions, or improved temporarily, such as in Canada’s [41] study or under specific circumstances as in Schover’s [49] study. In Robertson’s study [58], sexual bother improved only temporarily. In Davison’s study [26], erectile function improved, but remained in the dysfunctional range, suggesting that ongoing use of aids was needed for penetrative sexual activity. Similarly, relationship satisfaction generally did not improve, with the exception of Walker’s pilot study [35].

There are still limitations and gaps in research on interventions to support sexual health in couples coping with prostate cancer treatment. Social and cultural issues have not generally been addressed in interventions to date in spite of being seen as important, at least theoretically [15]. A small literature describes cultural differences in the process of sexual recovery after prostate cancer, such as African Americans [37] and Japanese Americans [38]. While the US Latino population is growing, relevant research has not been published on this group. Cultural sensitivity in interventions is lacking.

The analytic approaches in the reviewed studies reflect the evolution of the art of dyadic data management. Generally speaking, comparisons of outcomes are focused on individual members of the couples who are evaluated using t tests or non-parametric statistics. The effect of various factors on those outcomes is assessed through regression analyses using hierarchical modeling. Longitudinal prospective data are examined through mixed general linear models or ANOVAs. While these approaches have been very useful in looking at individuals or in comparing outcomes, they have not had the ability to reflect effectively an important phenomenon in couples’ research—the mutual influence that members of a couple exert on each other’s outcomes as they go through an experience, such as sexual recovery after prostate cancer treatment. The analytic approach may also influence how we understand the effectiveness of interventions. A new methodology has begun to enter study design which offers added precision for couple-based intervention research. Its originators, Kenny, Kashy, and Cook, have developed a method that considers the interaction between the “actor” and partner in the process of analyzing longitudinal data [59••]. Studies that have used this approach have been able to show the way in which interdependence within couples affects outcomes [16, 60].

Looked at from a biopsychosocial perspective, it is important to acknowledge that erections are important to men. Female partners’ flexibility about ED and about what represents a satisfactory sex life [57] can help take pressure off, but we should not underestimate the meaning of sexual penetration to women. It is therefore important that research on recovering or maintaining erectile function continue. At the same time, since for most men erectile function declines over time [61], it is critical that providers and couples recognize that continuing to be sexually active with penetration may involve the use of erectile aids after prostate cancer treatment. Psychological support thus becomes important. Titta’s and Chambers’ trials [44•, 56] suggest that with education and support, men are more willing to use aids to erections and thus maintain their sex lives despite erectile dysfunction. Walker’s RCT [50••] documents that even men treated with ADT, who are least expected to have the motivation to maintain sexual intimacy, remain sexually active with proper preparation for the sexual side effects. While included in some interventions, there is perhaps insufficient emphasis on encouraging couples to consider non-penetrative, pleasure focused sex.

Based on the persistent difficulty in improving couple relationship adjustment and intimacy in sexual health interventions, it is important to reflect on what precisely drives the notion that couples coping with prostate cancer need “treatment” for their relationship. There are many well adjusted couples who encounter prostate cancer. For these couples, outcomes such as relationship improvement may not be relevant. They may need education to prepare them for the challenges of post-prostate cancer sex, support for learning to change their sexual paradigm and for the emotional process towards accepting it. Perhaps screening for couples with relationship problems and tailoring interventions may improve intervention effectiveness in this domain.

Other variables may need a greater presence in interventions. Normalization and support for the arduousness of sexual recovery has been rarely incorporated into sexual health interventions in prostate cancer which tend to be brief. Although some attention has been given to the negative feelings about cancer and about sexual aids [49], direct attention to feelings of loss, grief, and yearning for old sexuality have only recently appeared in the literature [21•, 62]. Pillai-Friedman and Ashline [63] speak eloquently about grieving lost sexuality in breast cancer, suggesting that in the context of the life-threatening nature of cancer, sexuality may be seen as a less important, even illegitimate concern [63]. The authors propose that cancer survivors must acknowledge the losses and recognize that their bodies have changed, accept their feelings about these losses, then through sensate focus exercises, develop a new sexuality, make meaning in the new sexual setting, and accept their bodies as well as their new sexual interactions.

Along with coping with the hardships of loss, sexual communication has yet to find a place in sexual health interventions. For many couples, menopause and later prostate cancer are the first time when they actually have to communicate about sex because their earlier, biologically driven sexuality, is no longer working. This is not a problem for all couples, but for those whose sexual relationship did not include sexual communication, discomfort with using language for their sexual experience becomes a barrier. Hampton and colleagues encouraged sexual communication by including sexual goal setting in their intervention. The positive appeal of peer support in the Chambers and Wittmann interventions demonstrates that talking about sex with someone “in the same boat” can enhance some sexual health outcomes.

Adults can stay sexually engaged as they age, despite physiologic dysfunction [64], if they recognize that their sexual interest is now based on the emotional memory of satisfying sexual activity and in the capacity for pleasure despite low function. They have to trust in each other to talk about sexual concerns and needs. Interventions must signal to both the patient and the partner from the beginning that emotional work about changed sexuality is necessary for staying sexually viable. Teaching couples to become an “intimate team,” a term coined by sexologist McCarthy [65], requires couples to use and strengthen their existing psychological bonds to work towards the desired outcome—a satisfying sexual relationship that may include the use of sexual aids after prostate cancer treatment.

A different framework, palliative, rather than curative may be relevant to couples coping with sexual side effects of prostate cancer. As such, it would alter the goals of sexual health interventions. While men do have a genuine medical problem—ED—instead encouraging notions of curing it, men may need to work in parallel on erection rehabilitation and acceptance of supportive measures so that they can remain sexually intimate. This approach reflects existing conceptual models [21•, 63, 66, 67] and incorporates the variables that have been identified: psychoeducation to develop realistic expectations through understanding the side effects of treatment and options for rehabilitation, psychological support for grieving sexual losses while adapting to the use of sexual aids, coaching to increase sexual repertoire and sexual communication. Instead of curing ED (which may be unrealistic expectations on the part of healthcare providers and researchers) and improving relationships, sexual health interventions can encourage resilience by empowering couples to use palliative methods to protect and preserve sexual function and relationship after prostate cancer treatment.

The paucity of research on gay men with prostate cancer and their partners has been lamented for at least a decade [20, 39, 40]. Emerging research is providing important information for understanding outcomes important to gay and bisexual men and their partners, such as the need to be able to manage symptoms (including sexual symptoms) well [41], the value of the ejaculate for erotic play and the need for firmer erections for anal sex [42, 43]. Additional important themes for interventions are providers’ lack of knowledge and skill to counsel gay and bisexual men and the tendency for the gay community to stigmatize men with sexual dysfunction [9]. Rose and colleagues [44•] also highlight the need for providers to learn to talk about gay and bisexual sex with patients. Interventions for gay and bisexual men and partners must address couples as well as providers and the gay community at large. Focusing on interventions for diverse groups with prostate cancer is a critical line of research that is long overdue.

Finally, bringing wisdom from clinical practice (such as Pillai-Freedman’s and Ashline’s [63] and McCarthy’s) [65] into intervention building is a resource that has not been fully tapped. Leveraging the accumulated research and clinical knowledge may provide in some measure answers for how to move forward effectively in building evidence for sexual health interventions for couples coping with prostate cancer.

In his commentary on Chambers’ study, Seftel suggests that we are still searching for an understanding of what is really important in couples’ sexual recovery after prostate cancer [68]. The search will continue because couples consider sexual health interventions highly desirable [69].

Conclusions

Research on interventions for couples coping with the sexual side effects of prostate cancer does not yet show desired effectiveness but has led to the identification of important variables and outcomes that together begin to outline what it required to support couples’ sexual relationships after prostate cancer treatment. While the improvement of sexual function remains important, pre-treatment preparation to foster realistic expectations about the need for sexual aids, normalizing grief and coaching sexual communication are necessary to address the biopsychosocial nature of sexuality. The goal of interventions may need to be reframed so as to reflect what is realistic and optimal to pursue. Couple interventions for diverse sexual and cultural groups are yet to be developed. New approaches to analyzing couples’ data promise to provide a more nuanced way of interpreting couple-based research.