Post-stroke sexual health and the need for counseling : findings from a German rehabilitation setting

Post-Stroke Sexual Health and the Need for Counseling:

Findings from a German Rehabilitation Setting

E. M. K. Drews (11013923) Masterthese Klinische Neuropsychologie

Begeleider: Dr. S. P. van der Werf Amsterdam, februari 2017

Programmagroep Brein en Cognitie Klinische Neuropsychologie

Afdeling Psychologie Universiteit van Amsterdam

Table of Contents

Abstract……… 3

Introduction………. 5

Post-Stroke Sexual Health as a Neglected Issue in Stroke Rehabilitation………… 5

Determinants of Post-Stroke Sexual Health………. 7

Direct physical determinants of post-stroke sexual health……….. 7

Indirect physical determinants of post-stroke sexual health……….. 9

Emotional determinants of post-stroke sexual health………. 10

The Impact of Surviving a Stroke on Romantic Relationships………...…. 11

Method………. 14

Participants……….. 14

Materials………...…………... 15

Demographic and medical information……….. 15

Multidimensionaler Fragebogen zur Sexualität (MFS)………... 15

Post-Stroke Sexual Health Survey………... 16

Hopsital Anxiety and Depression Scale (HADS-D) ……… 16

Barthel Index (BI)………...…………... 17

Fatigue Skala (FS)………...……… 17

Procedure………...……… 18

Analyses……… 19

Results……… 22

Descriptive Statistics……….. 22

Prevalence of anxiety, depression, fatigue, and ADL dependence………. 22

General information related to stroke and comorbid disorders……… 22

Medication use following stroke……… 23

Perceived changes in sexuality following stroke………... 23

Past treatment related to sexuality after stroke………. 23

Future treatment related to sexuality after stroke………. 24

Inferential Statistics……… 25

Sexual anxiety and sexual depression………. 25

First model: predicting sexual satisfaction………. 25

Second model: predicting counseling preference……… 26

Third model: causal mediation analysis……….. 27

Discussion……… 28 Practical Implications……….. 31 Limitations……….. 32 Conclusion……….. 33 References……….. 34 Appendices………. 40

Appendix A: Baseline demographics………. 40

Appendix B: Medication list……….. 41

Appendix C: Perceived changes in sexuality………. 42

Appendix D: Previous treatment related to sexuality……… 43

Appendix E: General counseling preferences after stroke……… 44

Abstract

While stroke is often accompanied by depression, anxiety, fatigue, and physical dependence, the association with post-stroke sexual health (PSSH) has received relatively little attention in rehabilitation research. Therefore, the present study aimed at (1) an improved understanding of PSSH and its relationship with these symptoms and at (2) investigating concomitant counseling experiences and preferences in a German rehabilitation setting. Using a cross-sectional, retrospective design among 69 stroke patients, we examined PSSH characteristics, associations between psychological and sexual distress, and PSSH-related counseling

preferences and experiences. The results indicate that physical dependence and fatigue

deteriorate PSSH and that depression and anxiety relate negatively to sexual activities. Only a minority of participants received PSSH-related counseling during the rehabilitation period, even though most participants would prefer to receive PSSH-related counseling within one year after stroke through discussion with a physician or psychologist. These findings

demonstrate that stroke worsens sexual health and indicate that awareness of the problematic nature of PSSH is often lacking. Evidence of unmet counseling preferences suggests a need for effective interventions and training of health-care providers to implement sufficient treatment for PSSH-related complaints.

My name is Silvia and I am 54 years old. Within one year, I suffered from ten strokes. Since then, I feel no sexual desire anymore- even though I enjoyed being intimate with my partner prior to the strokes. All staff members that I have met during my rehabilitation process have been very hesitant to discuss sexual issues. As a patient, you only get short answers like ‘It may be that your stroke has to do with it’. I would have appreciated if intimacy with my partner would have been addressed and if my sexuality would have been part of the rehabilitation process. I feel alone with my questions and I do not know where to find answers.

Stroke is a leading cause of death and disability in the Western world (Tulchinsky & Varavikova, 2014). Even if the individual survives, physical impairments and psychosocial changes often persist (Thompson & Walker, 2011). These changes and impairments have been associated with profound alterations in stroke survivors’ sexuality. According to this, post-stroke sexual health (PSSH) has been defined as ‘a state of physical, emotional, mental, and social well-being in relation to sexuality’ (World Health Organization [WHO], 2006, as cited in Beal & Millenbruch, 2015, p. 228). However, sexual well-being is often threatened by the physical and emotional consequences of a stroke, such as physical dependence, fatigue, depression, and anxiety. Notwithstanding that sexual health contributes greatly to the quality of life of stroke survivors (Guo et al., 2015), prior research indicates that PSSH is addressed insufficiently by health-care professionals (Stein, Hillinger, Clancy, & Bishop, 2013). In the following, it will be explained how physical impairments and psychosocial changes impact PSSH and why PSSH-related issues are frequently avoided in rehabilitation contexts.

Post-Stroke Sexual Health as a Neglected Issue in Stroke Rehabilitation

Stroke rehabilitation generally aims at increasing physical and cognitive functioning to enhance the quality of life of stroke survivors. Therefore, aspects such as improving physical balance and endurance, management of comorbidities, and education to prevent another stroke are of particular importance in rehabilitation. Nonetheless, most health-care professionals (90%) also consider PSSH essential for the holistic care of stroke patients (Haboubi & Lincoln, 2003). Unfortunately, most health-care professionals avoid discussing PSSH-related issues in practice (Rosenbaum, Vadas, & Kalichman, 2014). Such a communication avoidance has been justified by time limitations, workplace regulations, and hesitation to embarrass patients (Dyer & das Nair, 2013). Moreover, most staff members are poorly trained to address sexual matters as they lack relevant knowledge, are unable to recognize sexual problems, and have limited

skills to discuss sexual issues with their patients (Gianotten, Bender, Post, & Höing, 2006). As a consequence, sexual topics have been commonly tabooed in stroke rehabilitation.

However, when looking at the counseling needs and preferences of stroke survivors, the problematic nature of avoiding sexual topics in rehabilitation contexts becomes even clearer as illustrated in a recent study by Stein and colleagues (2013). In this study, all male participants and two-thirds of the female participants met the standard criteria for sexual dysfunction and often suffered from comorbid depression, physical dependence, and chronic fatigue. Importantly, most stroke survivors (71%) considered sexual health relevant for their post-stroke rehabilitation and more than seven out of ten stroke survivors (71%) would have liked to receive PSSH-related counseling within one year after stroke. In practice, less than two out of ten stroke survivors (15%) actually received PSSH-related counseling. Therefore, the authors concluded that a mismatch exists between patient preferences and provider delivery of PSSH-related information.

Despite these unprecedented and meaningful findings, the generalizability of this study should be considered limited as an exploratory design was used and as a low response rate (14%) led to a rather small sample size (N=38). Additionally, participants were recruited through a stroke rehabilitation research registry, leading to an unusually young but severely affected sample of stroke survivors. Consequently, the low response rate and the sample characteristics suggest that participating individuals were more interested and more comfortable in sharing PSSH-related information than those who did not participate. The authors, therefore, assumed that the results may overstate the percentage of stroke survivors suffering from sexual dysfunction and desiring PSSH-related counseling. For that reason, we decided to replicate the study in order to investigate the robustness of the findings.

As Stein and colleagues (2013) showed that most but not all stroke survivors have clear counseling preferences, we reasoned that such preferences are related to the individual sexuality. In particular, we hypothesized that counseling preferences depend on two aspects;

namely on consciousness about one’s sexuality, and on the satisfaction with one’s sexual relationship. First, we reasoned that stroke survivors, who think and reflect thoroughly about their sexuality, have stronger counseling preferences as they are eager to understand how their sexuality changed following the stroke from a medical or therapeutic perspective. Second, we deduced that stroke survivors, who are very satisfied with their sexual relationship, have weaker counseling preferences as they do not perceive the need to receive PSSH-related counseling or treatment. Taken together, previous research indicates that health-care professionals often avoid discussing sexual issues despite the finding that many stroke survivors require PSSH-related counseling as they suffer from a deteriorated sexual health. In the following, physical and emotional factors impacting PSSH will be defined in greater detail.

Determinants of Post-Stroke Sexual Health

Looking back at the formal definition, PSSH has been characterized as well-being in a physical, emotional, mental, and social sense (WHO, 2006). Such a state of sexual well-being, however, is often unachievable as physical impairments and psychosocial changes following stroke interfere with one’s sexuality. These physical impairments and their direct and indirect effects on PSSH will be explained hereinafter. Subsequently, common mental and emotional changes after stroke will be linked to PSSH. Finally, the impact of surviving a stroke on one’s romantic relationship will be described.

Direct physical determinants of post-stroke sexual health. Research shows that PSSH often depends on the anatomic location of the stroke and on neuroendocrine functioning after stroke, on medical conditions accompanying stroke, and on the side effects of the medication taken. In particular, sexual dysfunction is most common in patients suffering from hemispheric stroke (Kimura et al., 2001; Monga, Lawson, & Inglis, 1986, Rees, Fowler, & Maas, 2007) and frequently accompanies subcortical lesions (Jung et al., 2008; Korpelainen, Kauhanen, Kemola, Malinem, & Myllylä, 1998). Moreover, certain lesions have been

associated with specific sexual impairments (e.g., thalamus seizures with losing erection and cerebellum lesions with disorders of ejaculation; Park, Obviagele, & Feng 2015). Besides, disrupted neuroendocrine and hormonal functioning post-stroke has been associated with sexual dysfunction (e.g., subarachnoid hemorrhages with blood in the third ventricle interfere with hypothalamic functioning and thereby inhibit the release of sex hormones in the pituitary gland; Rees et al., 2007).

Previous research further demonstrates that medical conditions accompanying stroke, such as diabetes and hypertension, often go hand in hand with risk factors for sexual dysfunction (Bener, Al-Hamaq, Kamran, & Al-Ansari, 2008; Calabrò, Gervasi, & Bramanti, 2011). For example, coronary artery disease may limit sexual activity through dyspnea or fatigue (Montorsi et al., 2006) and atherosclerosis has been associated with a reduction of blood flow affecting the sexual organs, thereby causing erectile disorders in males (Gratzke et al., 2010) and reduced vulvar lubrication and engorgement in females (Allahdadi, Tostes, & Webb, 2009).

Side effects of medication used to prevent a secondary stroke or to treat comorbid disorders may also contribute to sexual dysfunction. Accordingly, antihypertensive medication, such as antidiuretics and beta blockers, have been associated with erectile dysfunction, decreased libido, and impaired ejaculation (La Torre, Giupponi, Duffy, Conca, & Catanzariti, 2015; Weiss, 1991). Moreover, drugs used to treat pain and spasticity often have sedative effects and thereby reduce sexual desire and functioning (Thompson & Walker, 2011). Antidepressants often decrease desire and lead to anorgasmia and erectile disorders in males and delayed lubrication in females (Reynaert, Zdanowicz, Janne, & Jacques, 2010).

Taken together, previous research suggests that the location of the stroke, neuroendocrine dysfunctioning post-stroke, medical conditions associated with stroke, but also medication use impinge on the sexual health of stroke survivors. Consequently, poor PSSH might be the rule rather than the exception when looking at the consequences of a stroke.

Indirect physical determinants of post-stroke sexual health. Stroke is frequently followed by neurological impairments, physical dependence, and fatigue. These factors affect PSSH indirectly as they complicate being intimate with a partner and as they require the individual to actively adjust the sexual activities to the changed circumstances. Looking at neurological impairments after stroke, functional disability often follows from hemiparesis, paralysis, dysarthria, dysphagia, or aphasia (Rosenbaum et al., 2014). Consequently, mobility and the ability to carry out everyday tasks are frequently restricted (Brandstater & Kim, 2016). Due to these physical disabilities, stroke survivors need assistance with mobility-related activities, such as getting out of bed, standing up, or walking. Likewise, activities of daily living (ADL), such as bathing and dressing often become difficult. In many cases, the physical condition of the stroke survivor is additionally worsened through nonvisible impairments such as sensory or perceptual deficits and visual field loss (Rosenbaum et al., 2014). Completion of habitual activities, thus, takes more time than the patient might have been used to and may require the assistance of relatives, partners, or therapists.

Besides, stroke is often followed by a lack of energy as 39-68% of patients suffer from persistent symptoms of fatigue, even years after the medical incident (Ingles et al., 1999; Schepers, Visser-Meily, Ketelaar, & Lindemann, 2006). Van der Werf, van den Broek, and Anten (2000) additionally demonstrated, that fatigue is a frequent and persistent symptom after stroke, which is perceived as particularly burdensome by many stroke survivors.

Taken together, former studies have emphasized the ubiquity of neurological impairments, ADL dependence, and fatigue following stroke. It seems likely that these impairments complicate intimacy and sexuality within a relationship and consequently impinge on sexual satisfaction of the stroke survivor. Therefore, we hypothesized that both fatigue and ADL dependence decrease sexual satisfaction. As we predicted above that sexually satisfied stroke survivors have weaker counseling preferences, we additionally examined whether

fatigue affects counseling preferences and tested whether this association is mediated by sexual satisfaction.

Emotional determinants of post-stroke sexual health. The abrupt changes brought on by a stroke have a large emotional impact on the stroke survivor and his or her dependents (Brandstater & Kim, 2016). While early recovery in stroke rehabilitation is often accompanied by an initial sense of gratification for survival and hope for continued recovery, functional deficits often persist, leading to frustration and despair (Rosenbaum et al., 2014). Undoubtedly, the emotional state accompanying stroke is complex and depends on the psychosocial background of the patient, but certain emotional reactions such as depression and anxiety are very common (Åström, 1996; Hackett, Yapa, Parag, & Anderson, 2005). Accordingly, Hackett and colleagues (2004) concluded in their systematic review on depression after stroke that one out of three stroke survivors experiences depressive symptoms. While the first few months after stroke onset have been traditionally considered as the period of greatest risk for depression, this review also showed that the prevalence is similar for acute, medium-term, and long-term phases of recovery. Prior research further shows that stroke survivors often suffer from low self-esteem (Kimura, Murata, Shimoda, & Robinson, 2001) and feel less attractive post-stroke (Seymour & Wolf, 2014). Consequently, stroke survivors report a lack of interest in their personal hygiene and outward physical appearance (Thompson & Walker, 2011). Due to this lack of self-esteem and a high prevalence of depression after stroke, one may assume that depression also becomes apparent in view of sexuality. Therefore, we hypothesized that stroke patients suffer more from sexual depression than individuals, who were not affected by a stroke. Moreover, previous studies indicated that general distress and sexual distress of stroke patients are associated (Brandstater & Kim, 2016; Seymour & Wolf, 2014; Stein et al., 2013). Accordingly, we may assume that those stroke patients, who display depressive symptoms post-stroke, also feel depressed about the sexual aspects in their lives. For that reason, we hypothesized that stroke

patients suffering from more severe depressive symptoms also suffer from more sexual depression.

Likewise, a prospective longitudinal study showed a high prevalence and persistence of generalized anxiety disorder post-stroke (Åström, 1996). Seemingly, anxiety after stroke also affects PSSH as stroke survivors fear rejection and are reluctant to impose emotional demands on their partner (Brandstater & Kim, 2016). As previous research indicates that stroke survivors feel tension and discomfort about their sexuality, we drew the hypothesis that stroke patients suffer more from sexual anxiety compared to individuals, who were not affected by a stroke. In line with our reasoning related to sexual depression after stroke, it seems probable that those individuals, who display elevated anxiety symptoms following stroke, also feel more anxious about the sexual aspects in their lives. Therefore, we hypothesized that stroke patients suffering from more severe symptoms of anxiety also experience more severe sexual anxiety. In conclusion, physical disability, cognitive impairment (Gaete & Bogousslavsky, 2008), and

dependence on others (Åström, 1996) following stroke often lead to anxiety and depression as many stroke survivors find it difficult to deal with the consequences of a stroke.

The Impact of Surviving a Stroke on Romantic Relationships

Physical and psychosocial changes post-stroke do not occur in a vacuum but also affect spouses and romantic partners. As a result, relationships after stroke often undergo a radical change. Spouses and equivalents often rivet increasingly on aspects of physical care, such as assisting with transfers or helping with personal hygiene. While such custodial tasks certainly involve bonding and intimacy, the sexual relationship often suffers from the changed circumstances. Correspondingly, Korpelainen, Nieminen and Myllala (1999) showed that partners of stroke patients are less interested in sexual activities, desire their partner to a lesser extent, participate less in sexual activity, and feel less sexually satisfied. Korpelainen and colleagues (1999) additionally showed that many stroke patients hold negative attitudes toward

sexuality, fear to perform poorly and that communication around sexuality is often lacking. Moreover, narrative interviews in a study by Kitzmüller and Ervik (2015) revealed that spouses perceive their stroke-affected partners as changed and sometimes even as strangers. As communication problems frequently add to relationships difficulties, some spouses decide to end their frustrating sexual relationships. Therefore, it appears that PSSH often entails profound relationship changes and circumvention of sexual issues within the relationship. Accordingly, it seems as if stroke survivors avoid thinking about and reflecting on the changed nature of their sexuality. To test this claim empirically, we examined if stroke patients are less conscious of their sexuality compared to individuals, who were not affected by a stroke. Taken together, intimate relationships change profoundly post-stroke. While stroke patients cope with the physical and emotional consequences of their stroke, partners need to adjust to their new caring role. Intimacy, however, frequently seems to fade into obscurity.

Table 1

Summary of hypotheses for the current study

The sexuality of stroke patients differs from the sexuality of non-affected individuals. 1a) Stroke patients are less conscious of their sexuality.

1b) Stroke patients are more sexually depressed. 1c) Stroke patients are more sexually anxious.

General psychological distress and sexual distress and of stroke patients are associated. 2a) Stroke patients suffering from stronger depressive symptoms display more sexual

depression.

2b) Stroke patients suffering from stronger anxiety symptoms display more sexual anxiety. PSSH-related counseling preferences are associated with the individual sexuality. 3a) More sexually conscious stroke patients have stronger counseling preferences. 3b) More sexually satisfied stroke patients have weaker counseling preferences. Sexual satisfaction of stroke patients is affected by fatigue and ADL dependence. 4a) Stroke survivors, who suffer more from fatigue and physical dependence, are less

sexually satisfied.

4b) The hypothesized association between fatigue and counseling preference is mediated by sexual satisfaction.

Method Participants

Based on an a priori power analysis with the program G*Power (Faul, Erdfelder, Lang, & Buchner, 2007), assuming a medium effect size (d = 0.5; Cohen, 1992) and using one-sample t-tests with power (1 – β) set at 0.95 and α = .05, two-tailed, we calculated that a total sample size of 54 is required1_{. However, as participation in the study was voluntary and anonymous, it} was unclear how many people would accept the invitation and participate in the study. To ensure a sufficiently large sample size, we recruited as many participants as possible.

In total, 180 stroke survivors, who rehabilitated in a German clinic (NRK Aachen Rehabilitation Center) between 2013 and 2016, were invited by phone and in person to participate in the study. 132 patients (73% of the initial sample) agreed to participate and 71 participants (39% of the initial sample) provided informed consent and returned their survey to the rehabilitation center. As two participants handed in empty questionnaires, 69 former stroke patients (39% of the initial sample), ranging in age from 27 to 82 years (M = 59.36, SD = 11.53), were included in the study. Participants were included in the study if they survived at least one stroke and if they received treatment in the rehabilitation clinic. Participants were further required to speak German fluently to guarantee that they would understand the questionnaire properly. No further exclusion criteria were applied. Most participants (61%) were male and the majority of both male (76%) and female (59%) participants was in a relationship at the time of the investigation.

1 _{Prior to conducting the study, we considered one-sample t-tests most relevant for our analysis to evaluate the}

sexual health of stroke survivors. Later on, we decided to investigate the association between sexual satisfaction, fatigue and counseling preferences based on a mediation analysis, which would have required a larger sample size.

Materials

Demographic and medical information. Demographic information related to age, gender, relationship status, the number of strokes, and years since the last stroke were assessed at the beginning of the questionnaire. Subsequently, the questionnaire asked for additional medical diagnoses, such as diabetes or hypertension, as well as for current medication use.

Multidimensionaler Fragebogen zur Sexualität (MFS). The German version of the Multidimensional Sexuality Questionnaire (MFS; Brenk-Franz & Strauß, 2011; Snell, Fisher, & Walters, 1993) is a 61–item self-report questionnaire to measure psychological tendencies associated with sexual relationships based on twelve subscales related to various aspects of human sexuality. The MFS uses a 5-point Likert scale ranging from 0 (not at all characteristic of me) to 4 (very characteristic of me). For all items, higher scores correspond to more pronounced tendencies. Subscores were calculated by summing the scores per subscale. Four relevant dimensions of sexuality (sexual consciousness, sexual depression, sexual anxiety, and sexual satisfaction) were investigated in the current study. First, sexual consciousness (MFS-C, 5 items) describes the tendency to think and reflect about the nature of one’s sexuality (Burt, 1980; Fenigstein, Scheier, & Buss, 1975; Miller, Murphy, & Buss, 1981) and contains items such as ‘I’m very alert to changes in my sexual desires’. The internal consistency for this subscale was found to be good (Cronbach’s α = .86; current study) to excellent (Cronbach’s α = .90; Brenk-Franz & Strauß, 2011). Second, sexual depression (MFS-D, 5 items) refers to the tendency to feel depressed about sexual aspects (Beck, 1979; Snell & Papini, 1989) and is investigated through items such as ‘I feel discouraged about my sex life’. The internal consistency for this subscale was found to be good (Cronbach’s α = .83; current study) to excellent (Cronbach’s α = .92; Brenk-Franz & Strauß, 2011). Third, sexual anxiety (MFS-A, 5 items) describes the tendency to feel tension, discomfort, and anxiety as related to sexuality (Snell et al., 1993). The subscale contains items such as ‘I’m worried about the sexual aspects of my life’. The internal consistency for this subscale was found to be acceptable (Cronbach’s

α = .77; current study) to excellent (Cronbach’s α = .92; Brenk-Franz & Strauß, 2011). Sexual satisfaction (MFS-S, 5 items) refers to the tendency to be highly satisfied with one’s sexuality (Hendrick, 1988) and is investigated through items as ‘My sexual relationship meets my original expectations’. The internal consistency for this subscale was found to be excellent (Cronbach’s α = .91; current study; Cronbach’s α = .92; Brenk-Franz & Strauß, 2011).

Post-Stroke Sexual Health Survey. PSSH characteristics and counseling preferences within stroke rehabilitation were assessed by means of a 14–item survey developed by Stein and colleagues (2013). The survey covers questions related to the timing of counseling, means of information delivery (e.g., printed material or health-care provider counseling), as well as the preferred profession of the counseling provider (e.g., physician). Example items include questions such as ‘Has your sexual functioning changed as a result of your stroke?’. To date, the questionnaire has only been used once in a small sample (N = 38; Stein et al., 2013) so that the reliability of the survey is unknown. The questionnaire has been translated into German by the first author under the supervision of a professional translator.

Hospital Anxiety and Depression Scale (HADS-D). The German version of the Hospital Anxiety and Depression Scale (HADS-D; Herrmann-Lingen, Buss, & Snaith, 2011) was used to assess anxiety symptoms A, 7 items) and depressive symptoms (HADS-D, 7 items). An example item to measure anxiety reads ‘I get a sort of frightened feeling as if something bad is about to happen’. Depressive symptoms are examined based on items such as ‘I look forward with enjoyment to things’ (reverse coded). The self-report measurement has been chosen as it was designed for hospital settings and as it contains no questions referring to physical complaints so that confounding from underlying somatic diseases is avoided (Sagen et al., 2009, p. 329). For each of the 14 items, the patient is asked to choose a response ranging from 0 (no symptoms) to 3 (maximum impairment), while considering the emotional state over the last seven days. The total score ranges from 0 – 42 with a higher score indicating more psychological distress. Both the internal consistency (Cronbach’s α = .80) and the test-retest

reliability (r = .80) were initially described as good (Herrmann-Lingen et al., 2011). In the current study, the internal consistency was acceptable for the anxiety subscale (Cronbach’s α = .77) and good for the depression subscale (Cronbach’s α = .83).

Barthel Index (BI). The Barthel Index (BI), originally described by Mahoney and Barthel (1965), is a 10–item measure of physical dependence related to common activities of daily living. The most conventional German self-report version (Quinn, Langhorne, & Stott, 2011) was used to quantify the functional change in stroke rehabilitation. This version was primarily chosen to compare the results from the current study best possible to the original study by Stein et al. (2013), who used the same format. Sample items include ‘Feeding’ and ‘Dressing’ whereby items are scored on a scale ranging from 0 (unable) to 15 (independent). Total scores range from 0 – 100, whereby higher scores indicate more physical independence. In previous studies, the internal consistency for the BI has been found to be excellent (Cronbach’s α = .93). In the current study, the internal consistency was found to be good (Cronbach’s α = .87).

Fatigue Skala (FS). The German translation of the Fatigue Scale (FS, Chalder et al., 1993; Martin, Staufenbiel, Gaab, Rief, & Brähler, 2010) was used to measure the severity of fatigue in the current sample. The 11–item self-rating scale assesses physical symptoms of fatigue through items such as ‘Do you have problems with tiredness?’ and mental symptoms of fatigue based on items such as ‘Do you have difficulty concentrating?’. Items are scored on a 4–point scale (better than usual – much worse than usual), leading to possible scores ranging from 0 – 33, whereby higher scores indicate more pronounced fatigue. In a previous study, the internal consistency was found to be excellent (Cronbach’s α = .93; Martin et al., 2010). In the current study, the internal consistency of the full scale was found to be acceptable (Cronbach’s α = .79).

Procedure

A retrospective cross-sectional study of former stroke patients was conducted using a collection of survey tools compiled into a single pen-and-paper questionnaire (see Appendix F). The first author recruited former stroke patients by searching the electronic medical records system of the rehabilitation center and by inviting current stroke patients at the very end of their rehabilitation period to participate in the study. If participants agreed to participate, then they were mailed the survey within two days and were told that they would have two months to return the survey (again by mail). Data was collected anonymously because of the private nature of the questionnaire. At the beginning of the questionnaire, participants received a brief explanation and were subsequently asked to work on all items except when they felt highly uncomfortable answering a particular question. At the end of the survey, contact details of the research group and of a professional German counseling organization (Pro Familia Aachen) were listed, given that participants have had remaining questions or were looking for further support. Subjects, who handed in empty questionnaires, were excluded from the study. The data collection took place over a period of four months. The ethical committee of the NRK Aachen Rehabilitation Center in Germany approved this study.

Analyses

Descriptive statistics were calculated in Excel; inferential statistics were computed with R (R Core Team, 2014). When single items in the questionnaires were missing, these missing values were imputed using multiple imputation with predictive mean matching (5 imputations with 3 iterations each, using the R package ‘mice’ with seed 500; Van Buuren & Groothuis-Oudshoorn, 2011). One-sample t-tests were used to compare the current sample with a normative sample (Brenk-Franz & Strauß, 2011) in terms of sexual consciousness (MFS-C), sexual depression (MFS-D), and sexual anxiety (MFS-A). Pearson’s product moment correlation coefficients were calculated to examine the associations between (1) depression and sexual depression and (2) anxiety and sexual anxiety based on the HADS and the MFS. To investigate the remaining hypotheses, we computed three regression models. To control for gender and relationship status, these variables were included as covariates in all regression models.

For the first model (Model 1), ADL dependence (BI) and fatigue (FS) were used to predict sexual satisfaction (MFS-S). Assumptions of the general linear model were tested using the ‘gvlma’ package (Pena & Slate, 2014). Subsequently, we checked if outliers on the studentized residuals were present and inspected the distribution of the studentized residuals. We, furthermore, tested for heterogeneity of error variances and multicollinearity of the included scales.

Figure 1. For Model 1, ADL dependence and fatigue were used to predict sexual satisfaction.

For the second model (Model 2), sexual consciousness (MFS-C) and sexual satisfaction (MFS-S) were used to predict the counseling preferences of the stroke survivors using logistic regression. Here, in addition to gender and relationship status, ADL dependence (BI), fatigue (FS), and the interaction between ADL dependence and fatigue were included as covariates2. The first imputed dataset was used to carry out the assumption tests and to make a subsequent mediation model tractable. Accordingly, the presence of outliers on the studentized residuals was checked and the distribution of the studentized residuals was visually inspected. Besides, we controlled for heterogeneity of error variances and multicollinearity of the included scales.

Figure 2. For Model 2, sexual consciousness and sexual satisfaction were used to predict the counseling preferences of stroke survivors.

For the third model (Model 3), a causal mediation analysis was carried out to investigate the association between fatigue (FS), sexual satisfaction (MFS-S) and the counseling preferences of the stroke survivors, using the ‘mediation’ package in R (Tingley, Yamamoto, Hirose, Keele, & Imai, 2014). Hence the direct effect of fatigue (FS) on counseling preference was investigated. Sexual satisfaction (MFS-S) was included as a mediator. Gender, relationship status, ADL dependence (BI), fatigue (FS), and the interaction between ADL dependence and fatigue were included as covariates, in line with the first two models. Because statistical tools

2 _{Fatigue and its predictors in Model 1 were included as covariates in anticipation of the mediation in Model 3,}

were not available to pool analyses for the mediation model, these analyses were run only on the first imputed data set.

Figure 3. For Model 3, the mediation model, fatigue and sexual satisfaction were used to predict counseling preference.

Results Descriptive Statistics

Prevalence of anxiety, depression, fatigue, and ADL dependence. Most participants were able to carry out basic activities of daily living independently, however, many participants suffered from depression, fatigue, and, to a lesser degree, anxiety. Depression and anxiety were categorized by mean scores ≥ 8 on the two HADS subscales, respectively (Petermann, 2015). Sixty percent (n = 42) of the participants had elevated depression scores. Of those participants, 12 (17% of the total sample) were categorized as borderline depressive (scores 8-10), while 30 (43% of the total sample) were categorized as more severely depressed (scores 11-21). Twenty-six percent (n = 18) of the participants had elevated anxiety scores. Of those participants, eight (13% of the total sample) were categorized as borderline anxious (score 8-10), while ten (14% of the total sample) were categorized as highly anxious (score 11-21). On average, participants scored 18 on the FS (SD = 6.0), which corresponds to an elevated score given that the highest possible score is 333. A cut-off score of ≥ 95 on the Barthel Index indicates ADL independence (Balu, 2009). According to this cut-off score, most participants (65%, n = 45) could carry out basic activities of daily living independently, but 22% could not do so (n = 16). Notably, 13% (n = 9) of the participants handed in incomplete BI scales and could not be categorized as either dependent or independent.

General information related to stroke and comorbid disorders. Most participants (68%) suffered from one stroke in the past (see Appendix A). The vast majority of all stroke survivors suffered from stroke within the last year (37%) or the year before (43%). Regarding comorbid disorders, about one-fifth of the participants (20%) were diagnosed with depression in the past and more than half of the participants (56%) suffered from hypertension.

3 _{Martin (personal communication) suggested to dichotomize the items (0, 0, 1, 1) so that a cut-off score ≥ 4 can}

be used to categorize clinically relevant fatigue. We decided not to dichotomize the items, as such a binary split would lead to a loss of power, residual confounding, and data loss (MacCallum, Zhang, Preacher, & Rucker, 2002; Royston, Altman, & Sauerbrei, 2006).

Medication use following stroke. Most participants (83%) were on a medication known to affect sexual dysfunction at the time of investigation (see Appendix B). The most frequently used drugs were nonsteroidal anti-inflammatory drugs (65%), lipid-lowering medication (61%), and angiotensin-converting-enzyme (ACE) inhibitors (38%). Medication use for antidepressants (13%), beta blockers (14%), and antidiuretics (7%) was comparable to the estimates mentioned by Stein et al. (2013). Medication use for anticonvulsants (6%) and phosphodiesterase-5 inhibitors (1%) was less prevalent than in the study by Stein et al. (2013). The majority of participants (90%) used multiple medications known to affect sexual dysfunction; the remaining participants (10%) did not indicate any medication use.

Perceived changes in sexuality following stroke. Almost one-third (29%) of the participants perceived a deterioration in sexual functioning following stroke and an equal number of patients (29%) indicated that they felt less sexually desirable post-stroke (see Appendix C). Moreover, about half of the sample indicated that disability through stroke had a considerable (28%) or large (20%) impact on their sexual functioning. We further asked if participants and their partners were worried that engaging in sexual activity might cause another stroke or other medical harm. Notably, one-third (32%) indicated that they are unsure or worried that sexual activity might cause another stroke or medical harm. Similarly, 24% of the stroke patients indicated that their partners were unsure or worried that sexual activity has a negative impact on the medical condition of their stroke-affected partner.

Past treatment related to sexuality after stroke. Seven out of ten participants (70%) did not receive treatment or counseling related to sexuality after stroke (see Appendix D). Additionally, most participants (88%) indicated that they did not actively search for sexual treatment. Of those who received treatment, most were informed by a physician (6%) or by a physiotherapist (4%). A few participants (6%) used written or online PSSH-related material. Most participants (51%) indicated further that the PSSH-related treatment they received was

unsatisfactory and only 15% of the participants reported that they received sufficient amounts of PSSH-related counseling.

Future treatment related to sexuality after stroke. Even though most participants indicated that they did not receive sufficient counseling, the majority of the participants (55%) indicated that they do not wish to receive PSSH-related counseling in the future (see Appendix E). Among those who stated a preference for PSSH-related counseling, physicians (55%) and psychologists (35%) were rated as most preferred counselors. Moreover, most participants (60%) would prefer an actual dialogue with a health-care provider over printed material (15%) or educational videos (1%). Lastly, most participants (62%) would like to receive counseling within six months after stroke.

Inferential Statistics

Hypothesis testing related to sexual anxiety and sexual depression. Contrary to our expectations, stroke patients (M = 14.31, SD = 5.60) did not differ from the normative sample (M = 15.43, SD = 3.25; Brenk-Franz & Strauß, 2011) in self-reported sexual consciousness (one-sample t-test, t(69) = -1.68, p = .098). Sexual consciousness was not affected by gender (p = .116) or relationship status (p = .592). In line with our hypothesis, stroke patients reported significantly more sexual depression (M = 5.16, SD = 5.62) than the normative sample (M = 3.16, SD = 3.57; one-sample t-test, t(69) = 3.01, p = .004). Sexual depression was neither affected by gender (p = .533) nor by relationship status (p = .089). There were no significant differences in sexual anxiety between the current sample (M = 3. 91, SD = 5.74) and the normative sample (M = 3.11, SD = 3.56; one-sample t-test, t(69) = 1.18, p = .241). Again, sexual anxiety was neither affected by gender (p = .328) nor by relationship status (p = .623). As hypothesized, depressive symptoms and sexual depression were positively correlated, r(68) = .44, p < .001, as were symptoms of anxiety and sexual anxiety, r(68) = .37, p = .002.

First model: predicting sexual satisfaction.

Assumption Testing. Based on a cut-off value of |3|, one outlier on the studentized residual was detected (r studentized = -3.40, Bonferroni p = .072) and removed from the analysis. The assumption of normality was only partly satisfied (Skewness = 12.29, p < .001; Kurtosis = 3.51, p = .061), indicating that the data was skewed right. The assumption of homogeneity of variances was satisfied, c2(1, N = 68) = 2.02, p = .16. The assumption of multicollinearity was satisfied (VIF < 2 for all estimated regression coefficients).

Hypothesis Testing. In line with our expectations, we found that fatigue significantly predicted sexual satisfaction, b = -.84, t(45) = -6.45, p < .001, indicating that more fatigued individuals felt less sexually satisfied. Contrary to our expectations, physical dependence did not influence sexual satisfaction, b = .05, t(45) = 0.74, p = .466. As our exploratory analyses indicated that many stroke survivors felt restricted in their sexual activities by physical

impairments post-stroke, we conducted a supplementary analysis to examine if physical dependence predicted changes in sexual functioning. Here we found that more physical dependence predicted a stronger deterioration in sexual functioning, b = -0.01, t(45) = -2.21, p = .032. Additionally, relationship status influenced sexual satisfaction, indicating that stroke survivors who were in a relationship were more sexually satisfied, b = 4.29, t(45) = 2.11, p = .041. The combined model was significant (R² = .48, p < .01) and predicted 48% of the variance in sexual satisfaction.

Table 2

Results of the regression analysis to predict sexual satisfaction

Source B SE B t p Intercept 8.82 5.82 1.52 .136 Physical Dependence 0.05 0.06 0.74 .466 Fatigue -0.84 0.13 -6.45 .000 Gender -0.59 1.57 -0.37 .710 Relationship Status 4.29 2.04 2.11 .041

Second model: predicting counseling preference.

Assumption Testing. Based on a cut-off value of |3|, one outlier on the studentized residual was detected (r studentized = -3.46, Bonferroni p = .061). The assumption of normality was only partly satisfied (Skewness = 8.71, p = .003; Kurtosis = 1.88, p = .171), indicating that the data was skewed right. The assumption of homogeneity of variances was satisfied, c2(1, N = 68) = 0.48, p = .49. There was no significant collinearity (VIF < 2 for all estimated regression coefficients), with the exception of fatigue and sexual satisfaction (VIF = 5.70).

Hypothesis testing. Contrary to our expectations, neither sexual consciousness, b = .13, t(45) = 1.67, p = .102, nor sexual satisfaction, b = -.12, t(45) = -1.86, p = .070, predicted counseling preference.

Table 3

Results of the regression analysis to predict counseling preference

Source B SE B t p Intercept -0.54 3.45 -0.16 .876 Sexual Consciousness 0.12 0.07 1.67 .102 Sexual Satisfaction -0.12 0.06 -1.86 .070 Gender -0.13 0.72 -0.18 .858 Relationship Status 1.97 1.15 1.71 .094 Physical Dependence -0.02 0.04 -0.49 .629 Fatigue -0.57 0.36 -1.56 .126 Physical Dependence x Fatigue 0.01 0.00 1.68 .102

Third model: causal mediation analysis. We further tested whether sexual satisfaction mediated the relationship between fatigue and counseling preference. As shown in Table 4, fatigue increased counseling preference (Total Effect, b = .03, p = .03). However, neither the direct (ADE, b = .02, p = .23) nor the indirect effect mediated by sexual satisfaction (ACME, b = .01, p = .24) reached significance. The mediation accounted for 34% of the total effect, but low power means that we cannot distinguish whether the effect of fatigue on counseling preference was direct or (partially or fully) mediated by sexual satisfaction.

Table 4

Results of the mediation analysis to predict counseling preference

Estimate 95% CI (lower) 95% CI (upper) p

Total Effect .03 0.01 0.06 .03

ACME .01 -0.01 0.03 .24

ADE .02 -0.01 0.05 .23

APM .34 -0.33 1.78 .26

Note. Total effect refers to the overall effect of fatigue on counseling preference; ACME refers to the average causal mediation effect by sexual satisfaction; ADE refers to the average direct effect of fatigue on counseling preference; APM refers to the average proportion of the total effect that was mediated by sexual satisfaction.

Discussion

In the present study, we investigated post-stroke sexual health and associated counseling preferences in a German rehabilitation setting. The primary findings of this study are that stroke has a severe impact on sexual health and that health-care providers often do not cater for the consequential needs of affected patients. Similar to previous studies (Kitzmüller & Ervik, 2015; Korpelainen et al., 1999; Stein et al., 2013; Thompson & Walker, 2011), we could show that many stroke patients suffer from declined sexual functioning, that many patients feel less sexually desirable post-stroke, and that physical impairments are perceived as limiting for sexual activities.

The multifaceted nature of PSSH becomes particularly clear when taking the critical role of physical dependence and fatigue into account. While we could not demonstrate that physical dependence reduces sexual satisfaction, our supplementary analysis revealed that physical dependence predicts a deterioration of sexual functioning. Moreover, we demonstrated that fatigue has a strong negative influence on sexual satisfaction. While such an association has been hypothesized previously (Park et al., 2015), to our knowledge this is the first study which reveals the impact of fatigue on post-stroke sexual health and satisfaction. Thereby, the study contributes to an existing literature highlighting the impact of fatigue on the quality of life of stroke survivors (Stein et al., 2013; Van der Werf et al., 2001). However, future studies should investigate the mechanisms underlying this relationship to scrutinize how fatigue impacts sexual satisfaction. For instance, when designing interventions to improve PSSH, fatigue should also be taken into account. Future interventions could for example integrate cognitive compensation strategies and regular exercise (Acciarresi, Bogousslavsky, & Paciaroni, 2014) next to PSSH-related counseling since prior research pointed to the beneficial effects of cognitive therapy and graded activity training on fatigue (Zedlitz, Rietveld, Geurts, & Fasotti, 2012).

The notion that PSSH often becomes a burden is illustrated by the fact that many stroke patients feel depressed and anxious about their sexuality. First, we found that many stroke survivors suffer from sexual depression. While Stein and colleagues (2013) reported a high prevalence of depression in stroke patients, we could additionally show that depression and sexual depression are strongly related. First, these results indicate that sexuality after stroke is qualitatively different from - and often inferior to - non-stroke affected sexuality. Second, these findings show that the perspective of patients on sexuality worsens post-stroke. As these and previous results are correlational, future studies should aim to establish the causal relationship between stroke and sexual depression. Such research should pay particular attention to antidepressant use, as antidepressants can reduce sexual desire (Reynaert et al., 2010; Weiss, 1991). Hence efforts to treat general depression may have the side effect of exacerbating sexual depression. Furthermore, intervention studies may investigate if PSSH-related counseling encourages individuals to actively cope with the consequences of the stroke and consequently alleviates sexual depression. Second, we found partial support for the notion that anxiety and sexual anxiety contribute to PSSH. While we showed that anxious stroke patients often feel tension and discomfort about their sexuality, we could not demonstrate that stroke patients inherently experience more sexual anxiety. This finding suggests that sexual anxiety should not be the primary focus of PSSH-related counseling. However, future research should examine sexual anxiety after stroke in greater detail to determine why stroke patients feel anxious about their sexuality and how such a sexual anxiety differs from general anxiety. As sexual anxiety has not been investigated in earlier stroke-related studies, qualitative research methods may be appropriate for such an investigation.

Furthermore, it became clear that both stroke patients and their partners are often uncertain about the interrelation between stroke and sexual activities. To resolve such uncertainties, PSSH-related counseling would have been important – however, adequate treatment was lacking in the majority of cases. Providing more adequate PSSH-related

counseling appears even more relevant as most participants indicated that they were not satisfied with the treatment they have received during their rehabilitation. As we could show that most participants would prefer counseling by physicians or psychologists soon after the medical incident, future interventions should be adapted to these preferences. Contrary to our hypotheses, PSSH-related counseling preferences were neither associated with sexual satisfaction nor with sexual consciousness. We would like to caution that this is not evidence against such an association, especially given the relatively low power of our analyses. Nevertheless, the absence of a clear association matches our exploratory analyses, where we observed that the counseling preferences of stroke survivors are diverse and sometimes even contradictory. Accordingly, most patients reported that the counseling they received was insufficient, yet at the same time, the majority of patients did not wish to receive PSSH-related counseling. Based on the insufficient counseling in many cases, this finding may be explained by the fact that many participants may not know what counseling looks like, which aspects are addressed, and why it might be helpful to address PSSH-related problems. Besides, we cannot exclude the possibility that participants had a negative attitude towards the counseling itself, which may have influenced their response tendencies. In light of these inconsistencies, it may further be that the concept of counseling preferences, and the scale used to measure this construct, require further refinement. Clearly, further research is needed to understand the nature and determinants of counseling preferences, including preferences for PSSH-specific counseling.

Taken together, the current research substantiated that fatigue and physical dependence bear on the sexual health of stroke survivors, who often react depressively or anxious regarding their changed sexuality. While patients suffering from these conditions could potentially profit from PSSH-related counseling, professional treatment is often lacking. Therefore, more research is necessary to determine PSSH in greater detail and to develop appropriate counseling structures in German rehabilitation settings.

Practical Implications

To the best of our knowledge is this the first study which directly investigated post-stroke sexual health and related counseling preferences in a German rehabilitation setting. The current study emphasized the relevance of post-stroke sexual health and further replicated earlier studies, in which physical dependence, fatigue, depression, and anxiety were found to impair the quality of life of stroke survivors. In addition to previous studies, we showed that these symptoms also affect post-stroke sexuality. First, our findings, which are similar to those from the Anglo-Saxon area, imply that counseling is not only lacking in those countries, but also in a German setting. Therefore, the findings demonstrate the need for increased awareness of post-stroke sexual health in German health-care settings and suggest that more interventions and opportunities for PSSH-related counseling should be provided. This appears especially relevant when considering that PSSH is often exacerbated by additional impairments following stroke, such as fatigue and depression. Second, our results imply that validated tools to diagnose PSSH might be useful in rehabilitation settings. As many patients and health-care providers might be hesitant to bring up sexual topics, such questionnaires may break the spell and thereby signal the need for counseling and initiate the discussion between health-care providers and patients.

Limitations

Three important limitations of the study should be mentioned. First and due to the retrospective cross-sectional design of the study, the premorbid sexuality of the participants could not be investigated. Therefore, we do not know if the participants suffered from sexual dysfunctions prior to the stroke; neither do we know how their sexual health developed over time. Future studies could address this limitation by using a prospective design and by comparing stroke patients and healthy individuals over time. Second and due to the limited recruitment period, we could only include a relatively small but heterogeneous sample, leading to a low power of the statistical analyses. A larger sample size, however, may be necessary to determine characteristics of PSSH in relation to individual patient characteristics, such as the kind of stroke and medication taken. Therefore, following studies should aim at including a sufficiently large sample size and should apply stricter inclusion criteria such as a specific location of the stroke. Third and due to the use of a self-report questionnaire, we cannot exclude the possibility that individuals responded in a socially desirable way or that they misunderstood certain questions (e.g. if they would like to receive PSSH-related counseling in general). As we used an anonymous pen-and-paper questionnaire, we could not ask participants to hand in complete questionnaires, neither could we ask for a justification in responses. Future studies could avoid these limitations by either applying semi-structured interviews, so that participants can ask comprehension questions before answering certain statements, or by consulting stroke patients and their partners so that the answers of the partners can be compared with each other.

Conclusion

In conclusion, the present study illustrates that post-stroke sexual health is a neglected and insufficiently investigated topic in German rehabilitation contexts. We could show that many stroke patients suffer from declined sexual functioning, feel less sexually desirable post-stroke, and that physical impairments are perceived as constraining sexual activities. Moreover, we demonstrated that physical dependence, fatigue, depression, and anxiety distinctly impair sexual health after stroke. These effects seemed largely independent of gender and relationship status. However, no support for a clear association between sexual consciousness, sexual satisfaction, and counseling preferences was found. Nevertheless, counseling preferences appeared unmet as many stroke survivors indicated that the counseling they have received was insufficient. These results signal the need for effective interventions and training of health-care providers to implement sufficient treatment for PSSH-related complaints. The complex relations between PSSH, stroke-related symptoms, and counseling preferences seem to underline the need of personalized care with respect to sexuality after stroke.

References

Acciarresi, M., Bogousslavsky, J., & Paciaroni, M. (2014). Post-stroke fatigue: epidemiology,

clinical characteristics and treatment. European Neurology, 72(5-6), 255-261.

Allahdadi, K. J., Tostes, R. C., & Webb, R. C. (2009). Female sexual dysfunction: therapeutic

options and experimental challenges. Cardiovascular & Hematological Agents in

Medicinal Chemistry (Formerly Current Medicinal Chemistry-Cardiovascular & Hematological Agents), 7(4), 260-269.

Åström, M. (1996). Generalized anxiety disorder in stroke patients a 3-year longitudinal

study. Stroke, 27(2), 270-275.

Balu, S. (2009). Differences in psychometric properties, cut-off scores, and outcomes between

the Barthel Index and Modified Rankin Scale in pharmacotherapy-based stroke trials:

systematic literature review. Current Medical Research and Opinion, 25(6), 1329-1341.

Beal, C. C., & Millenbruch, J. (2015). A qualitative case study of poststroke sexuality in a

woman of childbearing age. Journal of Obstetric, Gynecologic, & Neonatal Nursing,

44(2), 228-235.

Beck, A. T. (1979). Cognitive therapy and the emotional disorders. Penguin.

Bener, A., Al-Hamaq, A. O., Kamran, S., & Al-Ansari, A. (2008). Prevalence of erectile

dysfunction in male stroke patients, and associated co-morbidities and risk factors.

International Urology and Nephrology, 40(3), 701-708.

Brandstater, M., & Kim, M. (2016). The Challenge of Altered Sexual Function in Stroke

Survivors Undergoing Rehabilitation. Topics in Geriatric Rehabilitation, 32(3),

199-203.

Brenk-Franz, K., & Strauß, B. (2011). Der Multidimensionale Fragebogen zur Sexualität

(MFS). Zeitschrift für Sexualforschung, 24(3), 256-271.

Burt, M. R. (1980). Cultural myths and supports for rape. Journal of Personality and Social

Calabrò, R. S., Gervasi, G., & Bramanti, P. (2011). Male sexual disorders following stroke: an

overview. International Journal of Neuroscience, 121(11), 598-604.

Chalder, T., Berelowitz, G., Pawlikowska, T., Watts, L., Wessely, S., Wright, D., & Wallace, E. P. (1993). Development of a fatigue scale. Journal of Psychosomatic Research, 37(2), 147-153.

Duffy, L., Gajree, S., Langhorne, P., Stott, D. J., & Quinn, T. J. (2013). Reliability (inter-rater agreement) of the Barthel Index for assessment of stroke survivors systematic review and meta-analysis. Stroke, 44(2), 462-468.

Dyer, K., & das Nair, R. (2013). Why don't healthcare professionals talk about sex? A

systematic review of recent qualitative studies conducted in the United Kingdom. The

Journal of Sexual Medicine, 10(11), 2658-2670.

Faul, F., Erdfelder, E., Lang, A. G., & Buchner, A. (2007). G* Power 3: A flexible statistical

power analysis program for the social, behavioral, and biomedical sciences. Behavior

Research Methods, 39(2), 175-191.

Fenigstein, A., Scheier, M. F., & Buss, A. H. (1975). Public and private self-consciousness:

Assessment and theory. Journal of Consulting and Clinical Psychology, 43(4), 522-527.

Gaete, J. M., & Bogousslavsky, J. (2008). Post-stroke depression. Expert Review of

Neurotherapeutics, 8(1), 75-92.

Gianotten, W. L., Bender, J. L., Post, M. W., & Höing, M. (2006). Training in sexology for

medical and paramedical professionals: a model for the rehabilitation setting. Sexual

and Relationship Therapy, 21(3), 303-317.

Gratzke, C., Angulo, J., Chitaley, K., Dai, Y. T., Kim, N. N., Paick, J. S., ... & Lue, T. F.

(2010). Anatomy, physiology, and pathophysiology of erectile dysfunction. The Journal

of Sexual Medicine, 7(1), 445-475.

Talk About Sex!-Improving sexual health for patients in stroke rehabilitation. BMJ

Quality Improvement Reports, 4(1), 1-4.

Haboubi, N. H. J., & Lincoln, N. (2003). Views of health professionals on discussing sexual

issues with patients. Disability and Rehabilitation, 25(6), 291-296.

Hackett, M. L., Yapa, C., Parag, V., & Anderson, C. S. (2005). Frequency of depression after

stroke a systematic review of observational studies. Stroke, 36(6), 1330-1340.

Hendrick, S. S. (1988). A generic measure of relationship satisfaction. Journal of Marriage and Family, 50(1), 93-98.

Herrmann-Lingen, C., Buss, U., & Snaith, P. (2011). Hospital Anxiety and Depression Scale- Deutsche Version (HADS-D). Huber.

Jung, J. H., Kam, S. C., Choi, S. M., Jae, S. U., Lee, S. H., & Hyun, J. S. (2008). Sexual

dysfunction in male stroke patients: correlation between brain lesions and sexual

function. Urology, 71(1), 99-103.

Kimura, M., Murata, Y., Shimoda, K., & Robinson, R. G. (2001). Sexual dysfunction

following stroke. Comprehensive Psychiatry, 42(3), 217-222.

Kitzmüller, G., & Ervik, B. (2015). Female Spouses’ Perceptions of the Sexual Relationship

with Stroke-Affected Partners. Sexuality and Disability, 33(4), 499-512.

Korpelainen, J. T., Kauhanen, M. L., Kemola, H., Malinen, U., & Myllylä, V. V. (1998).

Sexual dysfunction in stroke patients. Acta Neurologica Scandinavica, 98(6), 400-405.

Korpelainen, J. T., Nieminen, P., & Myllylä, V. V. (1999). Sexual functioning among stroke

patients and their spouses. Stroke, 30(4), 715-719.

La Torre, A., Giupponi, G., Duffy, D., Conca, A., & Catanzariti, D. (2015). Sexual

dysfunction related to drugs: a critical review. Part IV: cardiovascular drugs.

Pharmacopsychiatry, 48(01), 1-6.

MacCallum, R. C., Zhang, S., Preacher, K. J., & Rucker, D. D. (2002). On the practice of

Mahoney F.I., Barthel D.W. (1965). Functional evaluation: the BARTHEL index. Maryland State Medical Journal, 14, 61–65.

Martin, A. (personal communication, April 5, 2016)

Martin, A., Staufenbiel, T., Gaab, J., Rief, W., & Brähler, E. (2010). Messung chronischer Erschöpfung–Teststatistische Prüfung der Fatigue Skala (FS). Zeitschrift für Klinische Psychologie und Psychotherapie. 39(1), 33-44.

Miller, L. C., Murphy, R., & Buss, A. H. (1981). Consciousness of body: Private and public.

Journal of Personality and Social Psychology, 41(2), 397.

Monga, T. N., Lawson, J. S., & Inglis, J. (1986). Sexual dysfunction in stroke patients. Arch

Phys Med Rehabil, 67(1), 19-22.

Montorsi, P., Ravagnani, P. M., Galli, S., Rotatori, F., Veglia, F., Briganti, A., ... &

Fiorentini, C. (2006). Association between erectile dysfunction and coronary artery

disease. Role of coronary clinical presentation and extent of coronary vessels

involvement: the COBRA trial. European Heart Journal, 27(22), 2632-2639.

Ingles, J. L., Eskes, G. A., & Phillips, S. J. (1999). Fatigue after stroke. Archives of Physical

Medicine and Rehabilitation, 80(2), 173-178.

Park, J. H., Ovbiagele, B., & Feng, W. (2015). Stroke and sexual dysfunction—A narrative

review. Journal of the Neurological Sciences, 350(1), 7-13.

Pena, E. A., & Slate, E. H. (2012). Global validation of linear model assumptions. Journal of

the American Statistical Association, 101(473), 341-354.

Petermann, F. (2015). Hospital Anxiety and Depression Scale, Deutsche Version (HADS-D).

Zeitschrift für Psychiatrie, Psychologie und Psychotherapie. 59(3), 251-253.

Quinn, T. J., Langhorne, P., & Stott, D. J. (2011). Barthel Index for stroke trials development, properties, and application. Stroke, 42(4), 1146-1151.

R Core Team (2014). R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria. Retrieved from: http://www.R-project.org/

Rees, P. M., Fowler, C. J., & Maas, C. P. (2007). Sexual function in men and women with

neurological disorders. The Lancet, 369(9560), 512-525.

Reynaert, C., Zdanowicz, N., Janne, P., & Jacques, D. (2010). Depression and sexuality.

Psychiatr Danub, 22(Suppl 1), 111-113.

Rosenbaum, T., Vadas, D., & Kalichman, L. (2014). Sexual Function in Post-Stroke Patients: Considerations for Rehabilitation. The Journal of Sexual Medicine, 11(1), 15-21.

Royston, P., Altman, D. G., & Sauerbrei, W. (2006). Dichotomizing continuous predictors in

multiple regression: a bad idea. Statistics in Medicine, 25(1), 127-141.

Sagen, U., Vik, T. G., Moum, T., Mørland, T., Finset, A., & Dammen, T. (2009). Screening for

anxiety and depression after stroke: Comparison of the Hospital Anxiety and

Depression Scale and the Montgomery and Åsberg Depression Rating Scale. Journal of

Psychosomatic Research, 67(4), 325-332.

Schepers, V. P., Visser-Meily, A. M., Ketelaar, M., & Lindeman, E. (2006). Poststroke fatigue:

course and its relation to personal and stroke-related factors. Archives of Physical

Medicine and Rehabilitation, 87(2), 184-188.

Seymour, L. M., & Wolf, T. J. (2014). Participation changes in sexual functioning after mild

stroke. OTJR: Occupation, Participation and Health, 34(2), 72-80.

Snell, W. E., Fisher, T. D., & Walters, A. S. (1993). The Multidimensional Sexuality

Questionnaire: An objective self-report measure of psychological tendencies associated with human sexuality. Annals of Sex Research, 6(1), 27-55.

Snell, W. E., & Papini, D. R. (1989). The Sexuality Scale: An instrument to measure sexual- esteem, sexual-depression, and sexual-preoccupation. The Journal of Sex Research, 26(2), 256-263

Stein, J., Hillinger, M., Clancy, C., & Bishop, L. (2013). Sexuality after stroke: patient

counseling preferences. Disability and Rehabilitation, 35(21), 1842-1847.

importance of psychological and physical issues. WebMed Central Physical Medicine,

2(12), 1-12.

Tingley, D., Yamamoto, T., Hirose, K., Keele, L., Imai, K. (2014). mediation: R Package for Causal Mediation Analysis. Journal of Statistical Software, 59(5), 1-38.

Tulchinsky, T. H., & Varavikova, E. A. (2014). The new public health. Academic Press.

Van Buuren, S., Groothuis-Oudshoor, K. (2011) mice: Multivariate Imputation by Chained Equations in R. Journal of Statistical Software, 45(3), 1-67.

Van der Werf, S. P., van den Broek, H. L., Anten, H. W., & Bleijenberg, G. (2001). Experience

of severe fatigue long after stroke and its relation to depressive symptoms and disease

characteristics. European Neurology, 45(1), 28-33.

Weiss, R. J. (1991). Effects of antihypertensive agents on sexual function. American Family

Physician, 44(6), 2075-2082.

Wessely, S., & Powell, R. (1989). Fatigue syndromes: a comparison of chronic" postviral" fatigue with neuromuscular and affective disorders. Journal of Neurology, Neurosurgery & Psychiatry, 52(8), 940-948.

Zedlitz, A. M., Rietveld, T. C., Geurts, A. C., & Fasotti, L. (2012). Cognitive and graded

activity training can alleviate persistent fatigue after stroke a randomized, controlled