Introduction

Cancer and its treatment may cause changes regarding intimacy and sexuality in patients [1,2,3]. Sexuality can be described as a central aspect of human beings that encompasses sexual self-concept, sexual functioning and sexual relationships [1, 4, 5]. In addition, sexuality can refer to sexual health, sexual pleasure, sexual awareness, self-esteem and sexual orientation [5,6,7,8,9]. Intimacy can be defined as an interactive process that occurs when a person discloses self-relevant feelings or information, resulting in feeling understood, cared for and accepted by the reaction of the other individual involved in the interaction [10, 11]. Moreover, intimacy is characterized as a quality of an interpersonal relationship in which individuals have reciprocal feelings of trust, connectedness, caring and emotional closeness and are able to openly communicate their thoughts and feelings with each other [12]. Intimate relationships can involve both emotional intimacy (e.g. sharing thoughts and feelings) and physical intimacy (e.g. touching and closeness) [12].

Changes in intimacy and sexuality can arise due to the cancer itself, the treatment or psychological and social factors such as anxiety or distress [13]. For instance, cancer treatment might cause problems with sexual desire and arousal problems [14,15,16]. Changes in sexuality can persist for years and can be extremely distressing for patients with cancer and their intimate partners [17].

Patients with cancer or patients who survived cancer have reported a need for information regarding changes in intimacy and sexuality [6]. Addressing sexual health adequately and timely, e.g. before, during and after treatment, may be crucial in identifying sexual problems and might ensure appropriate treatment and support [18, 19]. Discussing these issues can alleviate anxiety and psychological distress [20,21,22] and may improve the quality of sexual or intimate life [18, 22, 23]. In addition, failure to address the need for information can be associated with increased psychological morbidity, including depression and relational dissatisfaction, as well as a reduction in self-efficacy and overall quality of life [24].

Though these are important issues, healthcare professionals often feel reluctant to discuss changes in intimacy and sexuality, and they frequently remain unaddressed in cancer care [2, 17, 25,26,27,28]. Several barriers faced by healthcare professionals have been recognized, such as a lack of time, lack of privacy [29], feeling uncomfortable discussing the topic, the patient’s advanced age [30] and a lack of skills, training and knowledge [1, 22, 27, 31].

Research suggests that communication tools may help overcome barriers and help healthcare professionals to initiate a conversation with patients about changes in intimacy and sexual concerns [32,33,34,35]. These tools can consist of models, guides or training that support communication with patients about intimacy and sexuality. In a previously conducted narrative review, several specific tools were identified that address sexual health issues in terminally ill patients, including the stepwise PLISSIT model (Permission, Limited Information, Specific Suggestions, Intensive Therapy) [22]. However, this study did not address the effectiveness or feasibility of the identified tools [22]. Consequently, the question of which tools are effective and feasible for addressing changes in intimacy and sexuality remains unanswered.

In order to answer this question, we sought to provide an overview of the feasibility and effectiveness of tools that support communication regarding changes in intimacy or sexuality with patients with cancer in inpatient and outpatient care. We address the following review questions in this review:

  1. 1)

    What evidence exists for the feasibility of these tools, from the perspectives of the professionals and patients involved?

  2. 2)

    What evidence exists for the effectiveness of tools that support communication about concerns and needs regarding intimacy or sexuality with patients with cancer?

  3. 3)

    What differences are found between patients with advanced cancer, patients with early stage cancer and cancer survivors in the feasibility and effectiveness of these communication tools?

Methods

Design

We conducted a systematic review to identify studies that focused on tools that support communication between patients and healthcare professionals about concerns regarding intimacy or sexuality. The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) [36], and the protocol is registered in PROSPERO (CRD42021283852).

Search strategy

A comprehensive search was performed in collaboration with a medical librarian (LS) in the bibliographic databases PubMed, Embase.com, Cinahl (Ebsco), APA PsycInfo (Ebsco), the Web of Science Core Collection and the Cochrane Library (Wiley) from inception to 26 June 2023. The search strategy consisted of free-text terms and controlled vocabulary for ‘cancer’ and ‘sexuality’ or ‘intimacy’ and ‘communication’. A search filter was used to exclude children. No language or time restrictions were included in the search strategy. In addition, the reference lists of all included studies were screened for relevant records. Duplicate articles were excluded (LS) using Endnote X20.01 (Clarivate™). The full search strategies are provided in Supplemental Material III.

Eligibility criteria

We included all types of empirical quantitative, qualitative or mixed-methods studies that focus on the following:

  • Tools (including models, guides, educational programmes or interventions) that promote and/or support communication between healthcare professionals and patients about concerns and needs regarding intimacy and sexuality.

  • Adult patients (18 years of age or older) with any type and stage of cancer, including cancer survivors.

  • Inpatient or outpatient settings.

  • Outcomes regarding the effectiveness or feasibility of the aforementioned communication tools. More specifically, these were outcomes directly related to sexuality, quality of life (i.e. physical, psychological, social or spiritual aspects) or quality of care (i.e. perceived quality of care or perceived satisfaction with communication). Outcomes regarding feasibility included perceptions and experiences related to usability, willingness to participate, duration of the applied intervention and lost to follow-up.

In the first selection procedure we came upon studies that included mixed populations (patients with various diseases). In addition to the above criteria and after discussion in the research group, we decided to exclude studies that involved mixed populations if it was not possible to extract data for only patients with cancer.

Study selection

Titles and abstracts were independently screened for potential eligibility by two reviewers (IJ and SA or CR or JR), using the systematic review software Rayyan (2016). Subsequently, two authors (IJ and SA or CR or JR) screened the full texts for eligibility. Any disagreement between authors was resolved by discussion with two other researchers (CE, AF). The study selection procedure and results can be found in the flow diagram in Fig. 1.

Fig. 1
figure 1

PRISMA flowchart [36]

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Quality assessment

The methodological quality of the included studies was assessed independently by two reviewers (SA and CR or JR or IJ) using the Mixed Methods Appraisal Tool version 2018 (MMAT) [37]. The MMAT tool is designed to appraise the methodological quality of quantitative, qualitative and mixed-method studies [37]. Each study was evaluated using five quality items, depending on the study design. The items were rated by answering ‘Yes’ (green), ‘No’ (red) or ‘Can’t tell’ (orange). The latter category meant that the paper did not report enough information to answer ‘Yes’ or ‘No’. We did not contact authors for additional clarification; however, we did look for subsequent papers that might provide an answer. Any disagreement between reviewers was resolved by discussion and with the involvement of an additional reviewer (IJ). MMAT scores are presented as global scores (Supplemental I) and are indicated by stars (*) in the tables. The stars correspond to the number of questions answered with ‘Yes’ (Table 1).

Table 1 Study demographics
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Data extraction

Three researchers (SA, CR, IJ) independently extracted data from the included studies in a predefined form. The following study characteristics were extracted: year of publication, country, study design, study population (including number of participants and age) and communication tool. For feasibility, where applicable, we extracted data on usage, willingness to participate, lost to follow-up and duration of the intervention. For effectiveness, we extracted data on outcomes related to intimacy and sexuality, quality of life and quality of care that were measured in patients, their partners or healthcare professionals.

Data synthesis

We decided beforehand not to do a meta-analysis because of expected heterogeneity in design and outcomes. Instead, we synthesized outcomes using a narrative approach and predesigned data charting forms. Data were extracted independently by two researchers (SA and CR or SA and IJ). The data charting forms were discussed with two other researchers (CE and AF). After several discussion rounds, all researchers agreed upon the finalized version of the charting tables.

Results

Results of the selection process

The literature search generated a total of 11,269 references. After removing duplicates, 6472 records were screened for eligibility based on title and abstract (Fig. 1). We excluded 6295 records, mainly because these studies did not focus on adult patients with cancer or did not include a tool supporting communication between healthcare professionals and patients. Five studies were excluded because they were written in Chinese or Korean and we were unable to read and assess the full text [70,71,72,73,74]. After reading the full text of 177 remaining references, we included 35 articles, published between 2001 and 2023. Of these, four articles concerned the same study, but were reporting different outcomes. Therefore, they were included as separate studies.

In total, 2567 patients (number per study ranging from 7 to 318), 677 partners (ranging from 7 to 189) and 423 healthcare professionals (ranging from 7 to 140), the majority being nurses (n = 215), were included in the studies. Most of the included patients in these studies were female (n = 2234, 87.0%). The mean age of the participating patients ranged from 34.2 to 62.7 years and of participating partners from 47.4 to 61.6 years (see Table 1). The country with the most studies was Iran (n = 9), followed by the USA (n = 5).

Methodological quality of the studies

The designs used and evaluated, as identified by the MMAT tool [37], were randomized controlled trials (RCTs) (n = 15), quantitative non-randomized studies (n = 12), qualitative studies (n = 2) and mixed methods studies (n = 6). Quality assessment scores using the MMAT tool ranged from 0 to 5 out of 5 (Supplemental I). Only two RCTs had maximum scores (5 out of 5 items present). Six of the 35 studies had low scores (0 or 1 out of 5 items); two were RCTs and four were mixed methods studies.

Tools supporting communication about intimacy and sexuality

Various tools were described in the 35 included studies, (see Table 1). The most commonly used tool was the specific, stepwise model PLISSIT [39, 48,49,50, 54, 61, 66, 75]. Two studies used the Extended PLISSIT model (EX-PLISSIT), which differs from the original PLISSIT model in that it is feedback-oriented while PLISSIT is a linear model [59, 68]. Other tools used were BETTER (Bring up the topic, Explain, Telling, Timing, Education, Recording), EASSi (Engagement, Assessment, Support and Signposting) or self-developed tools. Tools were applied in counselling sessions, educational programmes, intervention programmes and nurse-led interventions (see Supplemental II).

Thirteen of the 35 studies focused on tools that support communication with individual patients with cancer or cancer survivors. Nine studies used communication tools for couples (patients with cancer and their intimate partner). Five studies focused on the use of communication tools for groups of patients and two studies used communication tools for both individual patients and couples or groups. Communication tools for healthcare professionals, predominantly nurses and nurse specialists, were used in six studies. These tools were applied in training sessions for healthcare professionals to equip them for conversations with their patients (Supplemental II).

Feasibility of communication tools

In 33 studies, feasibility was assessed with regard to duration, usability, willingness to participate and lost to follow-up (see Table 2).

Table 2 Outcomes regarding feasibility of tools supporting communication about intimacy and sexuality
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Duration of the intervention

The duration of the intervention programme for the tools, such as counselling sessions, home visits or educational programmes, ranged from one single session to eight sessions, with each session ranging from 30 up to 120 min (see Table 2).

Usability

Ten studies reported outcomes relating to usability. Overall, patients, partners and healthcare professionals experienced tools as useful in increasing awareness about the topic, valuable and helpful in addressing intimacy and sexuality, and simple to use. In one study, healthcare professionals considered the tablet-based Engagement, Assessment, Support and Signposting tool (EASSi) as less suitable when patients were medically unstable, were attending the appointments with a family member (other than their partner), or when patients were not concerned about sexual issues [19].

Willingness to participate

Data on willingness to participate could be extracted from 24 studies. Rates varied from 19% in two studies [49, 55] to 100% in two studies [41, 57]. Of the two studies where willingness to participate was 100%, one study involved a clinical nurse specialist intervention in individual patients [57] and the other study involved a problem-solving approach for groups of patients [41]. Both high and low rates of willingness to participate were found in individual (19% to 100%) and group interventions (19% to 100%). Two studies among healthcare professionals reported on willingness to participate (56.7% and 87.5%) [34, 40].

Lost to follow-up

In 25 studies, lost to follow-up or compliance rate was reported, indicating the willingness to continue participation in the programme or comply with the intervention. Lost to follow-up rates ranged from 1.7% in a study among couples to 57% in a study applying PLISSIT in individual patients. Lost to follow-up varied in studies with individual patients (2.0% to 57.0%), in couples (1.7% to 35.7%) and in groups of patients (10.0% to 21.7%).

Effectiveness of communication tools related to intimacy and sexuality

Of the 35 publications, 34 reported outcomes that indicate effectiveness i.e. outcomes related to intimacy and sexuality, quality of life or quality of care.

Outcomes related to intimacy and sexuality

Twenty-two studies reported on outcomes related to intimacy and sexuality, i.e. sexual function, sexual distress, sexual concerns, sexual communication, sexual behaviour and sexual satisfaction (see Table 3). Besides sexual functioning, some studies also measured outcomes related to intimacy and sexuality, such as sexual self-confidence, sexual concerns, sexual beliefs and relationship satisfaction.

Table 3 Outcomes regarding effectiveness of tools supporting communication about intimacy and sexuality
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Sexual function was assessed with the Female Sexual Function Index (FSFI, 13 studies), the Changes in Sexual Functioning Questionnaire (CSFQ-14, one study), the International Index of Erectile Function (IIEF, two studies), the Lasry Sexual Functioning Scale (LSFS, one study), the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction (PROMIS SexFS, one study), the Sexual Health Inventory for Men (SHIM, one study), or a self-developed questionnaire consisting of several items related to sexual function (one study). A statistically significant improvement was found over time in the patient’s sexual functioning in 11 studies, mostly in studies among individual patients. Of these, five studies based their intervention on PLISSIT [38, 48, 50, 54, 59]. One study among couples indicated improvement in female sexual functioning and little improvement in male sexual functioning, without providing information about significance [62]. Six studies did not find a significant difference over time [39, 43, 47, 56, 57, 61].

Sexual distress among individual patients was assessed in two studies, using the Index of Sexual Satisfaction and the Female Sexual Distress Scale-Revised (FSDS-R). Both studies reported a decrease in sexual distress [54, 62]. Of these studies, one study applied PLISSIT-based counselling among individuals [54] and the other study applied a phone-based intervention among couples [62].

Relationship satisfaction was assessed in four studies with the (Brief) Dyadic Adjustment Scale [43, 48, 60, 62] and in one study with the Chinese version of the Revised Dyadic Adjustment Scale (CR-DAY) [56]. Relationship satisfaction significantly improved in one study that used PLISSIT counselling among individuals [48], in one study that applied individual counselling based on the BETTER model [60], and in one study that used a psychosocial intervention among couples [56]. One study, which used a phone-based couple intervention discussing physical intimacy and sexual concerns, indicated a medium-sized effect on relationship satisfaction [62]. This was the only study that reported on intimacy and it indicated little improvement.

Outcomes related to quality of life

Nineteen studies reported on outcomes regarding quality of life. Besides overall quality of life (17 studies), studies also reported effects on other related outcomes (six studies), such as sexual quality of life, psychological well-being and body image (see Table 2).

Overall quality of life was assessed using various questionnaires. The assessment was made using the Sexual Quality of Life-Female (SCOL-F, five studies), followed by the European Organization for Research and Treatment for Cancer Quality of Life Questionnaire (EORTC-QLQ-C30, four studies), the World Health Organization Quality of Life Questionnaire-BREF (WHOQoL-BREF, two studies) and the Functional Assessment of Cancer Therapy-General (FACT-G, three studies), the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Breast (EORTC-QLQ-BR23, one study), the Medical Outcomes Study Health Survey Short Form (SF-12, one study), or a self-developed questionnaire (one study).

In total, seven studies reported a statistically significant improvement over time in overall quality of life [38, 42, 51, 54, 56, 57, 66]. Of these, three studies based their intervention on PLISSIT, which was applied to individual patients [38, 54, 66]. The remaining ten studies did not report a significant difference in overall quality of life. Among these studies, five based their intervention on PLISSIT among individuals (one study) [49], couples (two studies) [50, 61] and groups (three studies) [39, 46, 59].

Psychological well-being was assessed in four studies using the Hospital Anxiety and Depression Scale (HADS, three studies) and the Self-Rating Depression Scale (SDS, one study). A significant reduction in anxiety was found in one study using an educational intervention, based on the principles of social cognitive theory, among individual patients [63]. Another study among individuals with the same intervention reported a reduction in anxiety and depression symptoms, but did not report on significance [64]. Furthermore, in a group of patients receiving an education-based nursing intervention, a decrease in severity of depression was found as compared to the control group [46]. The remaining study, which applied couple-based PLISSIT counselling, did not find a significant difference in psychological well-being [61].

Also, one study that applied PLISSIT-based counselling among individuals [48] reported a significant reduction in treatment-related side effects and a significant improvement in body image, assessed with the Body Image Scale.

Outcomes related to quality of care

Eleven studies reported on outcomes regarding quality of care, i.e. satisfaction with communication or other outcomes related to quality of care (see Table 3).

Outcomes related to satisfaction with communication were reported in seven studies. Satisfaction with communication was assessed with the Dyadic Sexual Communication scale (two studies), self-developed items (two studies), audio recordings (two studies) and the Olson Martial Quality Questionnaire (one study). A statistically significant improvement in communication after the intervention was found in only one study, which used a self-developed nurse-led programme among couples [69]. Four studies indicated an improvement in communication, but did not report any information regarding significance [34, 62, 64, 68]. Of these four studies, one study applied PLISSIT in training for healthcare professionals and indicated an increase in discussions of sexual health and improvement of communication behaviours after the intervention [34]. Furthermore, one study reported that there was no significant difference in sexual communication after applying PLISSIT-based counselling among couples [61].

Sexual attitudes were assessed with the Sexual Attitudes and Beliefs Survey (SABS) (two studies) [40, 58] and a patient survey (one study) [19]. Only one study reported a significant improvement after the intervention, which consisted of an eLearning resource for healthcare professionals; it stated that healthcare professionals experienced fewer barriers to providing sexual support [40].

Also, one study among individuals reported on referrals. It found no significant effects of the screening-tool for sexual health on numbers of referrals to a sexual counsellor or pelvic floor physiotherapist, based on patients’ medical records [65].

Differences in feasibility and effectiveness of communication tools between early stage cancer, advanced cancer and cancer survivors

Of the 35 publications, eight studies focused on cancer survivors [38, 39, 47, 50, 51, 54, 59, 65]. The interventions included in these studies were PLISSIT-based in four studies [39, 50, 54, 59] and based on other tools in the remaining four studies [38, 47, 51, 65]. Furthermore, five of these eight studies involved individual cancer survivors [38, 47, 51, 54, 65], two studies involved groups of patients [39, 59] and one study focused on couples [50]. Willingness to participate was reported in six studies and varied from 40.0% (individual patients) to 90.2% (group of patients) [38, 39, 47, 51, 54, 59]. Lost to follow-up ranged from 3.0 to 57.0% (both were studies of individual patients) [38, 54].

Of these eight studies focussing on cancer survivors, seven studies assessed sexual functioning, predominantly with the Female Sexual Function Index (FSFI). Sexual functioning significantly improved in five studies [38, 50, 51, 54, 59]. Quality of life was assessed in seven studies with different questionnaires; improvement was reported in three studies [38, 51, 54].

None of the studies compared cancer survivors with patients with cancer (early stage or advanced cancer).

Discussion

This review considered 35 studies on the feasibility and effectiveness of tools to support communication about changes in intimacy and sexuality among patients with cancer or cancer survivors. In 11 studies, the stepwise PLISSIT model was used, while a total of 15 other tools were described in the other studies. The tools were considered feasible and practical and most appeared to be effective in improving sexual functioning, quality of life and quality of care.

Based on the 35 studies, it is not possible to identify any variation in terms of feasibility and effectiveness between patients with early stage cancer and those with advanced cancer. However, previous research has shown that patients with early stage cancer can have different needs compared to patients with advanced cancer [76, 77].

The overall methodological quality of the 35 studies, as assessed with the MMAT tool, varied from low (none of the criteria were met) to high (all criteria were met). The five studies where the methodological quality was assessed as high (four or five criteria were met) used counselling based on PLISSIT, BETTER or Schover’s sexual assessment method and found statistically significant differences in sexual functioning when applied in individual patients [51, 60, 66] or groups of patients [59].

Although our review revealed a broad range of feasible and effective tools, previous research highlighted the reluctance that healthcare professionals might experience when addressing issues related to sexuality and intimacy, resulting in unaddressed issues during care for patients with cancer [17, 25, 26, 28]. Furthermore, earlier research demonstrated that communication tools can be beneficial for healthcare professionals in overcoming barriers and initiating conversations on these sensitive subjects [32,33,34]. However, due to the wide range of communication tools available and the flexibility in their application, nursing staff or other professionals might find it hard to choose a specific tool. The choice could be based on how often a tool has already been researched and found to be proven effective. This systematic review demonstrates that the PLISSIT-model stands out as both the most commonly researched tool and as an effective method for addressing intimacy and sexuality. Therefore, based on this review, the PLISSIT-model can be recommended.

Additionally, this review shows that of the 35 included studies, only one study addressed effects on intimacy; it indicated little improvement. Most of the research focuses on sexuality among patients with cancer [15, 16, 78]. Studies that focus on outcomes related to sexuality might have adopted an inclusive view that considers sexuality as a fundamental aspect of human being, occasionally encompassing intimacy within its scope [5]. Nonetheless, it is important to recognize that intimacy can be defined as an interactive process in its own right [10, 11].

Another noteworthy finding is that 12 of the studies included in our review were conducted in non-Western countries such as Iran, Turkey, Yemen and Egypt. Various non-Western cultural and religious perspectives might hinder open conversations regarding sexuality [79, 80]. However, none of these studies explicitly address cultural or religious factors. Nevertheless, it is recommended for healthcare professionals to be aware of cultural and religious aspects in their communication, especially in communication about the end of life [81].

Methodological considerations

A strength of this systematic review is that we used multiple relevant literature databases in the search process. An additional strength is that we performed a methodological appraisal of the studies that were included. The MMAT tool enabled us to assess both quantitative and qualitative research designs.

A limitation of this review is the fact that the included studies considered various outcomes and used a variety of questionnaires to assess the outcomes. Most used questionnaires are previously validated, such as FSFI, EORT-QLQ and HADS. However, because of the various outcomes and variety of questionnaires, we were unable to conduct a meta-analysis. Nevertheless, it was evident that the overall use of communication tools proved to be effective.

Another limitation of this review is that we had to exclude five articles that were written in Korean or Chinese and that seemed to fulfil our inclusion criteria [70,71,72,73,74]. Four of these studies applied PLISSIT in their intervention [71,72,73,74] and one study used a Sexual Health Improvement Programme [70]. Results regarding sexual functioning could however be read from tables and abstracts; all reported significant improvement in sexual functioning, which seems to be in line with the findings of our review [70,71,72,73,74].

Conclusion

This systematic review shows that the use of tools that support communication about changes in intimacy and sexuality among individual patients with cancer or cancer survivors, couples or groups of patients is feasible and effective. Various communication tools were used in counselling, educational or nurse-led programmes. The most commonly used tool, the stepwise PLISSIT model, proved to be feasible for HCPs and to have a positive effect on patients’ and partners’ sexual functioning and quality of life. However, the specific communication tool or approach utilized seems to matter less than the very fact of paying attention to changes in intimacy and sexuality.