Sexual health at the end of life in patients with advanced cancer and their partners. Results of a Dutch prospective longitudinal study (eQuiPe)

Sexual health at the end of life in patients with advanced cancer and their partners. Results of a Dutch prospective longitudinal study (eQuiPe) | medRxiv /* */ /* */ <!-- <!-- /*! * yepnope1.5.4 * (c) WTFPL, GPLv2 */ (function(a,b,c){function d(a){return"[object Function]"==o.call(a)}function e(a){return"string"==typeof a}function f(){}function g(a){return!a||"loaded"==a||"complete"==a||"uninitialized"==a}function h(){var a=p.shift();q=1,a?a.t?m(function(){("c"==a.t?B.injectCss:B.injectJs)(a.s,0,a.a,a.x,a.e,1)},0):(a(),h()):q=0}function i(a,c,d,e,f,i,j){function k(b){if(!o&&g(l.readyState)&&(u.r=o=1,!q&&h(),l.onload=l.onreadystatechange=null,b)){"img"!=a&&m(function(){t.removeChild(l)},50);for(var d in y[c])y[c].hasOwnProperty(d)&&y[c][d].onload()}}var j=j||B.errorTimeout,l=b.createElement(a),o=0,r=0,u={t:d,s:c,e:f,a:i,x:j};1===y[c]&&(r=1,y[c]=[]),"object"==a?l.data=c:(l.src=c,l.type=a),l.width=l.height="0",l.onerror=l.onload=l.onreadystatechange=function(){k.call(this,r)},p.splice(e,0,u),"img"!=a&&(r||2===y[c]?(t.insertBefore(l,s?null:n),m(k,j)):y[c].push(l))}function j(a,b,c,d,f){return q=0,b=b||"j",e(a)?i("c"==b?v:u,a,b,this.i++,c,d,f):(p.splice(this.i++,0,a),1==p.length&&h()),this}function k(){var a=B;return a.loader={load:j,i:0},a}var l=b.documentElement,m=a.setTimeout,n=b.getElementsByTagName("script")[0],o={}.toString,p=[],q=0,r="MozAppearance"in l.style,s=r&&!!b.createRange().compareNode,t=s?l:n.parentNode,l=a.opera&&"[object Opera]"==o.call(a.opera),l=!!b.attachEvent&&!l,u=r?"object":l?"script":"img",v=l?"script":u,w=Array.isArray||function(a){return"[object Array]"==o.call(a)},x=[],y={},z={timeout:function(a,b){return b.length&&(a.timeout=b[0]),a}},A,B;B=function(a){function b(a){var a=a.split("!"),b=x.length,c=a.pop(),d=a.length,c={url:c,origUrl:c,prefixes:a},e,f,g;for(f=0;f<d;f++)g=a[f].split("="),(e=z[g.shift()])&&(c=e(c,g));for(f=0;f<b;f++)c=x[f](c);return c}function g(a,e,f,g,h){var i=b(a),j=i.autoCallback;i.url.split(".").pop().split("?").shift(),i.bypass||(e&&(e=d(e)?e:e[a]||e[g]||e[a.split("/").pop().split("?")[0]]),i.instead?i.instead(a,e,f,g,h):(y[i.url]?i.noexec=!0:y[i.url]=1,f.load(i.url,i.forceCSS||!i.forceJS&&"css"==i.url.split(".").pop().split("?").shift()?"c":c,i.noexec,i.attrs,i.timeout),(d(e)||d(j))&&f.load(function(){k(),e&&e(i.origUrl,h,g),j&&j(i.origUrl,h,g),y[i.url]=2})))}function h(a,b){function c(a,c){if(a){if(e(a))c||(j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}),g(a,j,b,0,h);else if(Object(a)===a)for(n in m=function(){var b=0,c;for(c in a)a.hasOwnProperty(c)&&b++;return b}(),a)a.hasOwnProperty(n)&&(!c&&!--m&&(d(j)?j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}:j[n]=function(a){return function(){var b=[].slice.call(arguments);a&&a.apply(this,b),l()}}(k[n])),g(a[n],j,b,n,h))}else!c&&l()}var h=!!a.test,i=a.load||a.both,j=a.callback||f,k=j,l=a.complete||f,m,n;c(h?a.yep:a.nope,!!i),i&&c(i)}var i,j,l=this.yepnope.loader;if(e(a))g(a,0,l,0);else if(w(a))for(i=0;i (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0];var j=d.createElement(s);var dl=l!='dataLayer'?'&l='+l:'';j.src='//www.googletagmanager.com/gtm.js?id='+i+dl;j.type='text/javascript';j.async=true;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-P4HH5NV'); Skip to main content Home About Submit ALERTS / RSS Search for this keyword Advanced Search Sexual health at the end of life in patients with advanced cancer and their partners. Results of a Dutch prospective longitudinal study (eQuiPe) Isabel S. van der Meer , View ORCID Profile Moyke A.J. Versluis , View ORCID Profile Heidi P. Fransen , Corien Eeltink , Arnold Baars , Dirkje Sommeijer , Tineke Smilde , Annemieke van der Padt-Pruijsten , View ORCID Profile Lonneke V. van de Poll-Franse , View ORCID Profile Natasja J.H. Raijmakers doi: https://doi.org/10.1101/2025.07.03.25330800 Isabel S. van der Meer 1 Department of research and Development, The Netherlands Comprehensive Cancer Organisation , Utrecht, The Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site Moyke A.J. Versluis 1 Department of research and Development, The Netherlands Comprehensive Cancer Organisation , Utrecht, The Netherlands 2 Graduate school of social and behavioral sciences, Tilburg University , Tilburg, The Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Moyke A.J. Versluis Heidi P. Fransen 1 Department of research and Development, The Netherlands Comprehensive Cancer Organisation , Utrecht, The Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Heidi P. Fransen Corien Eeltink 3 Department of Gastrointestinal Cancer, Dijklander Hospital , Purmerend/Hoorn, the Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site Arnold Baars 4 Department of Internal Medicine, Hospital Gelderse Vallei , Ede, the Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site Dirkje Sommeijer 5 Department of Medical Oncolgy, Amsterdam University Medical Centre , Amsterdam, The Netherlands 6 Department of Medical Oncology, Flevo Hospital , Almere, the Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site Tineke Smilde 7 Department of Medical Oncology, Jeroen Bosch Hospital , ‘s-Hertogenbosch, The Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site Annemieke van der Padt-Pruijsten 8 Department of Internal Medicine, Maasstad Hospital , Rotterdam, The Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site Lonneke V. van de Poll-Franse 1 Department of research and Development, The Netherlands Comprehensive Cancer Organisation , Utrecht, The Netherlands 2 Graduate school of social and behavioral sciences, Tilburg University , Tilburg, The Netherlands 9 Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute , Amsterdam, The Netherlands 10 CoRPS – Center of Research on Psychological disorders and Somatic diseases, Departmentc of Medical and Clinical Psychology, Tilburg University , Tilburg, The Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Lonneke V. van de Poll-Franse Natasja J.H. Raijmakers 1 Department of research and Development, The Netherlands Comprehensive Cancer Organisation , Utrecht, The Netherlands Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Natasja J.H. Raijmakers For correspondence: n.raijmakers{at}iknl.nl Abstract Full Text Info/History Metrics Data/Code Preview PDF Abstract Background Sexual health can be negatively affected by cancer. There is a paucity of literature exploring changes in sexual health during the end of life. Aim To assess changes in sexual health in patients with advanced cancer and their partners at the end of life, and to identify the associated factors. Design A prospective longitudinal study of patients with advanced cancer and their partners on the quality of care and quality of life (QoL) (eQuiPe). Patients and partners completed 3-monthly questionnaires. Sexual health (desire, activity, satisfaction and enjoyment) was measured using the EORTC QLQ-SH22. Setting/participants Patients aged ≥18 years and diagnosed with advanced cancer were recruited in one of the forty participating Dutch hospitals. Relatives were recruited through patients, and for this study only couples (patient-partner) were included (n=352). Results Towards death, patients remained relatively stable in sexual activity (range 15-19), satisfaction (range 40-45), and enjoyment (range 30-44). Similar results were found for partners. In patients, sexual desire significantly decreased towards the end of life (β 0.4, 95%CI 0.1-0.7). Moreover, greater decline in physical functioning was associated with poorer outcomes in most aspects of sexual health. Sexual desire, activity and satisfaction were individually associated with QoL in patients. Conclusions Sexual health remains relatively stable at the end of life in patients with advanced cancer and their partner. Patients with worse physical functioning report worse sexual health and sexual desire, activity and satisfaction are individually associated with better QoL. Therefore, addressing sexual health in palliative care is essential. Background In the Netherlands approximately 38,000 people are diagnosed with advanced cancer each year ( 1 ). Despite significant medical advances in oncological care, patients with advanced cancer still have a limited median survival ( 2 , 3 ). The diagnosis and treatment of advanced cancer have a significant impact on patients and their relatives and maintaining or improving the quality of life (QoL) for these patients is paramount. Sexual health is an integral part of QoL and consists of several components, including sexual activity, enjoyment, satisfaction, and intimacy ( 4 ). Advanced, incurable cancer and subsequent treatments can have negative implications for sexual health, both for patients as their partners. Over 40% of patients with curable cancer encounter sexual problems post-treatment ( 5 , 6 ). The majority of patients with advanced cancer (75%) reported low sexual satisfaction ( 7 ) and lower levels of sexual activity ( 8 ). Moreover, patients with advanced cancer reported lower sexual health compared to patients with curable cancer, due to side effects of treatment and physical changes at the end of life ( 9 ). The dynamics of sexual health and its relation to QoL of patients with advanced cancer may change throughout the disease trajectory, as most patients reported fluctuations in the frequency and intensity of sexuality, especially in the last months of life ( 7 , 9 , 10 ). Changes in sexual health emerge from physical, mental and emotional transformations, such as changes in body image, and shifts in relationship dynamics due to altered social roles ( 11 , 12 ). However, the importance of sexuality for patients with advanced cancer remains relatively unchanged at the end of life ( 10 , 13 ). Current literature consists mainly of cross-sectional studies on sexual health, with a limited understanding of the changes in sexuality during at the end of life ( 8 , 10 , 13 , 14 ). Additionally, the majority of sexual health studies have focused on sexual functioning ( 6 , 9 , 15 – 18 ) and on cancer survivors ( 12 , 17 , 19 – 21 ), with an emphasis on female patients ( 16 , 21 , 22 – 26 ). Understanding how sexual health changes in the end of life is needed to support patients and their partners to optimize QoL. Such knowledgde is essential to raise awareness among healthcare providers of the importance of sexual health in the management of advanced cancer. Therefore, the aim of this study was to assess the changes in sexual health among adult patients with advanced cancer and their partners in the end of life, and the factors associated with these changes. Methods Study design and ethics A longitudinal, multicenter, prospective, observational cohort study (eQuiPe) was conducted to assess the QoL and quality of care among patients with advanced cancer and their relatives in the Netherlands ( 27 ). Patients were approached either through direct engagement by the attending physician at one of the 40 hospitals, or through self-registration between November 2017 and March 2020. Initial contact with patients was established via telephone by the research team, with inquiries made regarding the willingness of relatives to join the study. Written informed consent was a prerequisite for study participation. Patients and relatives received a baseline questionnaire followed by subsequent three-monthly follow-up questionnaires until the patient’s death. Questionnaires were administered either online or on paper via the Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship (PROFILES)( 28 ). Clinical data of patients were obtained by linking to the to the Netherlands Cancer Registry (NCR)( 29 ). The eQuiPe study was exempted from full medical ethical review by the Antoni van Leeuwenhoek’s hospital Medical Ethics Committee (METC17.1491), in accordance with the Dutch Medical Research Involving Human Subjects Act (WMO). Registration details of the study can be accessed through the Netherlands Trial Register under the identifier NTR6584, and additional information on the study has been published elsewhere ( 27 ). Study population Patients and relatives had to be aged 18 years and older and able to complete the questionnaire in Dutch to be deemed eligible for inclusion in the study. Additional information can be found elsewehere ( Appendix 1 ). For this analysis, deceased patients of whom a partner also completed a questionnaire in the last 18 months of the patient’s life were selected. In cases where neither the patients nor their partners responded to any of the sexual health questions, both the patient and the partner were excluded from the final analysis. Of the 566 couples, 352 couples were included in the final analysis ( Figure 1 ). Download figure Open in new tab Figure 1. Flowchart of the study procedure Measures Sexual health Sexual health was assessed at baseline and three-monthly follow-up questionnaire using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Sexual Health (EORTC QLQ-SH22) ( 30 , 31 ). The sexual health subscale comprised four questions and related to the past four weeks, measuring sexual desire, sexual activity, sexual satisfaction, and sexual enjoyment. Response options included a 4-point Likert scale ranging from 1 ‘Not at all’ to 4 ‘Very much’. Responses were linearly transformed to a scale of 0-100, with higher scores indicating better outcomes ( 30 , 31 ). Socio-demographic and clinical characteristics Age, sex, religion, education level, relationship duration, having children, and children living at home were self-reported in the baseline questionnaire. Education was categorized according to the International Standard Classification of Educational Guidelines: low, middle and high ( 32 ). Patients and partners/relatives were asked to which religion they belonged, which was categorized in being religious or not. Comorbidities were measured at baseline using the Self-administered Comorbidity Questionnaire (SCQ) ( 31 ). Primary tumor type and date of death were obtained from the NCR ( 29 ). Time to death was defined as the time (in months) between completion of the questionnaire and date of death. Subsequently, in each questionnaire, patients reported if they received cancer treatment (including chemotherapy, radiotherapy, immunotherapy, hormonal therapy or other therapies) in the last 18 months of life and was eventually incorporated as a binary variable (yes/no). Body image Body image was measured by the validated Body Image Scale (BIS), with higher scores indicating a lower body image. The BIS comprised of ten questions and measured the perception of their body image in the past week, with responses standardized on a 0-30 scale ( 33 ). Quality of life Physical functioning and global QoL were measured by the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30) ( 34 ). For both physical functioning and global QoL, responses were linearly transformed to a 0-100 score, with higher scores indicating better functioning/higher global QoL. Statistical analysis Descriptive statistics were used to summarize the socio-demographic and clinical characteristics of patients and their partners. Time to death was categorized into cohorts of 3 months: 16-18 months, 13-15 months, 10-12 months, 7-9 months, 4-6 months, and 0-3 months before death to summarize the course of sexual desire, activity, satisfaction, and enjoyment over time. Mixed-effects multivariable linear regression was performed to assess changes in sexual health over the last 18 months of the patient’s life for both patients and partners separately. The analysis among patients included time to death (continuous), age, sex, body image, treatment, comorbidities, physical functioning, treatment, tumor type, QoL, and QoL of the partner ( 11 , 35 , 36 ). The regression of the partner also included the patient’s time to death, treatment, primary tumor and QoL. A final regression analysis was performed to examine which aspects of sexual health were associated with QoL, adjusted for variables that were significant in the primary analysis among patients. Statistical analyses were performed in STATA v17.0 and significance was set at p≤0.05. Results Socio-demographic and clinical characteristics From the 566 couples included in the eQuiPe study, 352 couples completed at least one questionnaire in the last 18 months of the patient’s life and were included in this analysis ( Figure 1 ). Patients had a mean age of 66 years (SD 10) and 57% were male, and partners had a mean age of 65 years (SD 10) ( Table 1 ). The most common primary tumors were lung (26%), colorectal (20%) and breast (12%). There were 4 same-sex couples, and most couples (98%) had a relationship for more than 5 years. View this table: View inline View popup Download powerpoint Table 1. Socio-demographic and clinical characteristics of the study population Sexual health in patients and partners in the end of life Patients sexual activity (range 15-19) and satisfaction (range 40-45) were relatively stable in the last 18 months of life ( Figure 2 ). Sexual desire decreased in the last 18 months, from 18 in 16-18 months before death to 13 in the last 3 months respectively. Enjoyment was 31 (SD 33) 16-18 months before death and was 36 (SD 34) in the last 3 months of life. Mixed effect regression analysis confirmed that time to death was not associated with satisfaction, enjoyment or activity, only with a decrease in sexual desire (β 0.37, 95%CI 0.07-0.67) ( Table 2 ). Download figure Open in new tab Figure 2. Sexual desire, activity, satisfaction, and enjoyment of patients with advanced cancer and their partner, in the last 18 months of life (n couples=352) View this table: View inline View popup Download powerpoint Table 2. Mixed-effects multivariable regression on the association between patient characteristics and sexual desire, activity, satisfaction, and enjoyment of patients Partners sexual desire (range 22-28), activity (range 12-15), satisfaction (range 42-46), and enjoyment (range 39-46) remained relatively stable in the last 18 months of the patients’ life. Mixed effect regression analysis confirmed that time to death was not associated with sexual desire, activity, satisfaction, or enjoyment ( Table 3 ). View this table: View inline View popup Download powerpoint Table 3. Mixed-effects multivariable regression on the association between partner and patient characteristics and sexual desir e, activity, satisfaction, and enjoyment of partners Factors associated with sexual health in patients and partners at the end of life Multivariable analyses showed that female patients had a steeper decline over time in sexual desire (β −14.26, p<0.05) and sexual activity (β –7.86, p<0.05) compared to male patients ( Table 2 ). Better physical functioning was associated with higher scores on sexual desire in time (β 0.20, p<0.05), with higher levels of sexual activity (β 0.19, p<0.05) and sexual enjoyment for patients (β 0.34, p<0.05) ( Table 2 ). Patients with a more positive body image also showed a significantly higher sexual satisfaction (β −1.02, p<0.05) compared to those with a lower body image. In partners, multivariable analysis showed that female partners also reported significantly lower levels of sexual desire over time (β −5.95, p≤0.05), compared to male partners ( Table 3 ). In partners, sexual desire (β −0.73, p<0.05), sexual activity (β −0.38, p<0.05) and sexual enjoyment (β −0.85, p<0.05) decreased with older age. Moreover, a better global QoL of the patient was associated with higher sexual desire in partners (β 0.09, p<0.05). Association between sexual health and QoL of patients over time Sexual desire (β 0.11, p<0.05), sexual activity (β 0.08, p<0.05) and sexual satisfaction (β 0.06, p<0.05) were significantly associated with higher global QoL over time in patients ( Table 4 ). View this table: View inline View popup Download powerpoint Table 4. Mixed-effects multivariable regression on the association between global QoL and sexual desire, activity, satisfaction, and enjoyment of patients * Discussion Main findings Couples confronted with advanced cancer reported diminished scores for sexual health in the end of life, and most aspects of sexual health remained stable over time for both patients and their partners. Only sexual desire in patients significantly decreased during the end of life. Patients’ sexual health was associated with physical functioning, tumortype and their partners’ age while partners’ sexual health was primarily associated with their own age. Moreover, sexual desire, activity, and satisfaction were significantly associated with global quality of life, indicating that these elements contribute to overall well-being in the last phase of life of patients with advanced cancer. The sexual health scores of patients with advanced cancer in this study are partially consistent with previous research on sexual health. Normative data from Dutch cancer survivors indicated that 61% of individuals were not sexually active or only minimally so ( 37 ). This aligns with our study’s results, where both patients and partners exhibited modest scores in sexual health. Furthermore, the mean sexual satisfaction of patients in our study ( 42 ) was similar to that of a cross-cultural field study, where patients with recurrent or progressed cancer reported a mean score of 39 ( 38 ). However, normative data from the Netherlands and Norway indicate higher levels of sexual satisfaction compared to the findings of our study ( 37 , 39 ). The lower scores observed in our study suggest that patients with advanced cancer may experience reduced sexual satisfaction as a consequence of their illness. Sexual enjoyment has not been widely explored before and comparing our findings with existing literature is difficult. However, available results on sexual enjoyment in patients with curative cancer show either similar or higher scores compared to the levels of enjoyment in our study in patients with advanced cancer (mean score 39) ( 17 , 25 , 40 ). The lower levels of sexual enjoyment in patients with advanced cancer suggest that patients may experienced more problemens with sexual enjoyment at the end of life than they do earlier in their (curative) cancer trajectory. Sexual health is often assumed to change at the end of life. However, in our study most aspects of sexual health remained stable during the end of life, except for patient’ sexual desire, this decreased in time towards death. Research on sexual health underpins this finding that for most patients the need for sexuality remains important, however there is a shift in sexuality towards less physicality, and sexuality is redefined toward a deeper emotional connection at the end of life ( 10 , 13 , 26 , 41 ). This shift in sexuality may (partly) explain why patients and partners in our study are relatively satisfied with their sex life, despite lower scores in sexual activity. Our study also showed that some patients’ sexual health was more affected than others. Patients with prostate cancer showed a stronger decrease in sexual desire, activity, and enjoyment, than patients with lung cancer. Also, partners showed a decrease in sexual activity if patients were diagnosed with prostate cancer. Previous research concluded that patients with prostate cancer may experience sexual dysfunction due to androgen deprivation therapy and its impact on daily functioning, caused by the disease or treatment ( 41 – 43 ). This sexual dysfunction likely directly affects multiple aspects of sexual health, leading to lower sexual health scores, as seen in this study. Moreover, female patients had a greater decline in sexual desire and sexual activity, and female partners also showed lower scores in sexual desire, compared to men. This could be explained by previous studies that highlighted increased emotional distress in women, regardless of role (patient or partner) ( 44 , 45 ), which may affect sexual health. Also, older partners showed a stronger decrease in sexual desire, activity, and enjoyment. An integrative review suggested that older patients with cancer are more likely to report decreased sexual health, in part due to barriers in seeking help caused by feelings of embarrassment and taboos ( 46 , 47 ). A higher age and decreased sexual activity are consistent with data from the general population in the United States ( 48 ). However, age did not affect sexual health in patients in our study, only of partners. Decreased physical functioning of patients was also associated with a greater decline in multiple aspects of sexual health, including sexual desire, activity, and enjoyment. This is in line with a previous study in patients with metastatic cancer that showed that more than half of the patients reported that poor physical condition negatively affected their sex life ( 6 ). This can be explained by the fact that when patients function worse physically, it negatively contributes to their QoL and therefore they experience more barriers to engaging in sexual interactions. Furthermore, most patients in this study received treatment, and it is known that the severity and intensity of treatment could affect the patient’s QoL ( 49 ), which can lead to decreased sexual health. We also showed that sexual desire, activity, and satisfaction were associated with a better overall QoL, indicating that sexual health remains an important element of QoL for patient at the end of life and their partners. This is in line with prior research, as patients reported that sexual health remained a priority, even at the end of life ( 8 , 10 ). Study limitations Some limitations of the study need to be addressed. Patient recruitment was performed by the attending physician, a process that may have contributed to selection bias, this could lead to an overestimation of sexual health. The EORTC’s sexual health questions are not widely used yet, which hampers the comparison of the results of this study. Also limited information regarding normative values are present of the sexual health items. Lastly, this study focused exclusively on couples to fill a gap in literature where the primary emphasis has been on patients only. However, a recent article has underscored that individuals who do not have a partner also deal with obstacles regarding intimacy and sexuality when dealing with terminal illness ( 50 ). Clinical implications This study underpins the importance to discuss the topic of sexual health in the end of life. Multiple studies showed that most patients with a life-threatening disease feel the need to discuss challenges in sexuality and intimacy ( 8 , 14 ). More than 75% of oncology healthcare providers agreed that it is their responsibility to initiate discussions about sexuality and intimacy ( 18 , 51 , 52 ). Nevertheless, several studies concluded that healthcare providers often fail to initiate these discussions ( 10 , 19 , 21 , 53 , 54 ). Barriers to address sexual health include feelings of discomfort, inadequate training, time constraints, assumptions about elderly patients and sexuality, and limited understanding of intimate relationship dynamics in the context of metastatic cancer ( 8 , 18 , 21 , 55 ). Patients are also reluctant to discuss these topics due to feelings of embarrassment or because they expected healthcare providers to take the lead ( 10 , 13 ). Further research is essential to examine whether patients perceive decreased sexual health as a concern both prior to diagnosis and at the end of life, as well as to assess their interest in discussing sexual health with their healthcare professional. The stepwise Permission Limited Information Specific Suggestions Intensive Therapy (PLISSIT) model is a tool that proved to be useful among healthcare providers and has a positive effect on QoL and sexual functioning in both patients and partners ( 56 ). Conclusion Sexual health in patients with advanced cancer and their partners remains relatively stable in the last 18 months of life, only sexual desire in patients decreases in time towards death. Patients with prostate cancer, female patients, and older partners are more likely to experience lower sexual health. Patients with a decreased physical functioning are also more likely to have a stronger decline in most aspects of sexual health and lower sexual health is associated with poorer QoL. Maintaining or improving QoL is paramount for patients with incurable cancer and their partners. Therefore, addressing sexual health in couples confronted with incurable cancer is important, also within the context of palliative care. Data Availability All data produced in the present study are available upon reasonable request to the authors https://gegevensaanvraag.iknl.nl/gegevensaanvraag Declarations Authorship Isabel S. van der Meer : formal analysis, methodology, project administration, resources, visualization, and writing – original draft. Moyke A.J. Versluis : formal analysis, methodology, project administration, and supervision. Natasja J.H. Raijmakers : funding acquisition, methodology, project administration, validation and supervision. All authors provided feedback in writing and conceptualization – editing and reviewing. Funding trial Declaration of conflicts of interest The authors have declared no financial or non-financial conflicts of interest. Research ethics and patient consent All patients and partners gave written consent to participate in the eQuiPe study. Data management and sharing Data from the eQuiPe study, formatted in DDI 3.x XML, can be retrieved through Questacy and is hosted on the PROFILES registry (Patient-Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship) at www.profilesregistry.nl . To uphold rigorous standards for enduring data preservation and accessibility, the study adhered to the principles outlined in the “Data Seal of Approval” created by Data Archiving and Networked Services (DANS) ( www.datasealofapproval.org ). Aknowledgements We extend our gratitude to all patients and partners who took part in the eQuiPe study, as well as to the NCR for their support. Appendix View this table: View inline View popup Download powerpoint Appendix 1: In- and exclusion criteria for patients and partners References 1. ↵ Uitgezaaide kanker in beeld . IKNL ; 2020 . 2. ↵ Changes in survival in de novo metastatic cancer in an era of new medicines | JNCI: Journal of the National Cancer Institute | Oxford Academic [Internet] . [cited 2024 Feb 15]. Available from: https://academic.oup.com/jnci/article/115/6/628/7086066 3. ↵ Overleving van kanker | Kanker.nl [Internet] . [cited 2024 May 2]. Available from: https://www.kanker.nl/algemene-onderwerpen/cijfers-over-kanker/uitleg-cijfers-over-kanker/overleving-van-kanker 4. ↵ Yuen Loke AJ. Editorial: sexual health: an integral part of our health and quality of life . J Clin Nurs . 2013 Dec; 22 ( 23–24 ): 3239 . OpenUrl PubMed 5. ↵ PDQ Supportive and Palliative Care Editorial Board . Sexuality and Reproductive Issues (PDQ®): Health Professional Version . In: PDQ Cancer Information Summaries [Internet] . Bethesda (MD) : National Cancer Institute (US) ; 2002 [cited 2024 Feb 26]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK65975/ 6. ↵ Bond CB , Jensen PT , Groenvold M , Johnsen AT . Prevalence and possible predictors of sexual dysfunction and self-reported needs related to the sexual life of advanced cancer patients . Acta Oncol Stockh Swed . 2019 May ; 58 ( 5 ): 769 – 75 . OpenUrl 7. ↵ Vitrano V , Catania V , Mercadante S . Sexuality in Patients With Advanced Cancer: A Prospective Study in a Population Admitted to an Acute Pain Relief and Palliative Care Unit . Am J Hosp Palliat Med . 2011 May ; 28 ( 3 ): 198 – 202 . OpenUrl CrossRef PubMed 8. ↵ Kelemen A , Van Gerven C , Mullins K , Groninger H . Sexuality and Intimacy Needs Within a Hospitalized Palliative Care Population: Results From a Qualitative Study . Am J Hosp Palliat Med . 2022 Apr ; 39 ( 4 ): 433 – 7 . OpenUrl PubMed 9. ↵ Ananth H , Jones L , King M , Tookman A . The impact of cancer on sexual function: a controlled study . Palliat Med . 2003 Mar ; 17 ( 2 ): 202 – 5 . OpenUrl CrossRef PubMed Web of Science 10. ↵ Lemieux L , Kaiser S , Pereira J , Meadows LM . Sexuality in palliative care: patient perspectives . Palliat Med . 2004 Oct ; 18 ( 7 ): 630 – 7 . OpenUrl CrossRef PubMed Web of Science 11. ↵ Gianotten WL . Sexuality in the palliative–terminal phase of cancer . Sexologies . 2007 Oct ; 16 ( 4 ): 299 – 303 . OpenUrl 12. ↵ Keesing S , Rosenwax L , McNamara B . A dyadic approach to understanding the impact of breast cancer on relationships between partners during early survivorship . BMC Womens Health . 2016 Aug 25; 16 ( 1 ): 57 . OpenUrl PubMed 13. ↵ Taylor B . Experiences of sexuality and intimacy in terminal illness: a phenomenological study . Palliat Med . 2014 May ; 28 ( 5 ): 438 – 47 . OpenUrl CrossRef PubMed 14. ↵ Kelemen A , Cagle J , Chung J , Groninger H . Assessing the Impact of Serious Illness on Patient Intimacy and Sexuality in Palliative Care . J Pain Symptom Manage . 2019 Aug ; 58 ( 2 ): 282 – 8 . OpenUrl PubMed 15. ↵ Campos LS , De Nardi SP , Limberger LF , Caldas JM . Sexual function and disease progression in women with advanced cancer . Support Care Cancer . 2022 Jun 1; 30 ( 6 ): 5093 – 8 . OpenUrl PubMed 16. ↵ Maiorino MI , Chiodini P , Bellastella G , Giugliano D , Esposito K . Sexual dysfunction in women with cancer: a systematic review with meta-analysis of studies using the Female Sexual Function Index . Endocrine . 2016 Nov ; 54 ( 2 ): 329 – 41 . OpenUrl PubMed 17. ↵ Åsberg RE , Giskeødegård GF , Raj SX , Karlsen J , Engstrøm M , Salvesen Ø , et al. Sexual functioning, sexual enjoyment, and body image in Norwegian breast cancer survivors: a 12-year longitudinal follow-up study and comparison with the general female population . Acta Oncol . 2023 Jul 3; 62 ( 7 ): 719 – 27 . OpenUrl PubMed 18. ↵ Krouwel EM , Nicolai MPJ , van Steijn-van Tol AQMJ , Putter H , Osanto S , Pelger RCM , et al. Addressing changed sexual functioning in cancer patients: A cross-sectional survey among Dutch oncology nurses . Eur J Oncol Nurs . 2015 Dec 1; 19 ( 6 ): 707 – 15 . OpenUrl PubMed 19. ↵ Hawkins Y , Ussher J , Gilbert E , Perz J , Sandoval M , Sundquist K . Changes in sexuality and intimacy after the diagnosis and treatment of cancer: the experience of partners in a sexual relationship with a person with cancer . Cancer Nurs . 2009 ; 32 ( 4 ): 271 – 80 . OpenUrl CrossRef PubMed Web of Science 20. Lee H , Song MK . State of the science of sexual health among older cancer survivors: an integrative review . J Cancer Surviv [Internet] . 2024 Feb 13 [cited 2024 Mar 11]; Available from : doi: 10.1007/s11764-024-01541-2 OpenUrl CrossRef 21. ↵ Vermeer WM , Bakker RM , Stiggelbout AM , Creutzberg CL , Kenter GG, ter Kuile MM. Psychosexual support for gynecological cancer survivors: professionals’ current practices and need for assistance. Support Care Cancer Off J Multinatl Assoc Support Care Cancer . 2015 Mar ; 23 ( 3 ): 831 – 9 . OpenUrl 22. ↵ Jeppesen MM , Mogensen O , Dehn P , Jensen PT . Needs and priorities of women with endometrial and cervical cancer . J Psychosom Obstet Gynaecol . 2015 ; 36 ( 3 ): 122 – 32 . OpenUrl PubMed 23. Simonelli LE , Pasipanodya E . Health disparities in unmet support needs of women with gynecologic cancer: an exploratory study . J Psychosoc Oncol . 2014 ; 32 ( 6 ): 727 – 34 . OpenUrl PubMed 24. Sexual quality of life assessment in young women with breast cancer during adjuvant endocrine therapy and patient-reported supportive measures | Supportive Care in Cancer [Internet] . [cited 2024 Jun 26]. Available from: https://link.springer.com/article/10.1007/s00520-022-06810-3 25. ↵ Brajkovic L , Korać D , Jelić K , Kopilas V . Sexual quality of life and body image of breast cancer patients: uncovering the meaning behind the symptoms . Psicooncología . 2024 Apr 11; 21 : 23 – 36 . OpenUrl 26. ↵ Redefining sexual health after gynaecological cancer: Lived experiences from Gynea, a digital rehabilitation programme - Breistig - 2024 - Journal of Clinical Nursing - Wiley Online Library [Internet] . [cited 2024 Jun 18]. Available from: https://onlinelibrary.wiley.com/doi/full/10.1111/jocn.16923 27. ↵ van Roij J , Zijlstra M , Ham L , Brom L , Fransen H , Vreugdenhil A , et al. Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol . BMC Palliat Care . 2020 Sep 9; 19 ( 1 ): 139 . OpenUrl PubMed 28. ↵ van de Poll-Franse LV , Horevoorts N , van Eenbergen M , Denollet J , Roukema JA , Aaronson NK , et al. The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts . Eur J Cancer Oxf Engl 1990 . 2011 Sep ; 47 ( 14 ): 2188 – 94 . OpenUrl 29. ↵ NKR Cijfers [Internet] . [cited 2024 Feb 26]. Available from: https://iknl.nl/nkr-cijfers 30. ↵ EORTC – Quality of Life [Internet] . 2018 [cited 2024 Feb 26]. Sexual Health . Available from: https://qol.eortc.org/questionnaire/qlq-sh22/ 31. ↵ csi. EORTC – Quality of Life . 2017 [cited 2024 Feb 26]. Item Library . Available from: https://qol.eortc.org/item-library/ 32. ↵ Schneider SL. The International Standard Classification of Education 2011 . In: Elisabeth Birkelund G , editor. Class and Stratification Analysis [Internet] . Emerald Group Publishing Limited ; 2013 [cited 2024 Sep 25]. p. 365 – 79 . ( Comparative Social Research ; vol. 30 ). Available from : doi: 10.1108/S0195-6310(2013)0000030017 OpenUrl CrossRef 33. ↵ Hopwood P , Fletcher I , Lee A , Al Ghazal S . A body image scale for use with cancer patients . Eur J Cancer Oxf Engl 1990 . 2001 Jan ; 37 ( 2 ): 189 – 97 . OpenUrl 34. ↵ Aaronson NK , Ahmedzai S , Bergman B , Bullinger M , Cull A , Duez NJ , et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology . J Natl Cancer Inst . 1993 Mar 3; 85 ( 5 ): 365 – 76 . OpenUrl CrossRef PubMed Web of Science 35. ↵ Ahn HS , Park CM , Lee SW . The clinical relevance of sex hormone levels and sexual activity in the ageing male . BJU Int . 2002 Apr ; 89 ( 6 ): 526 – 30 . OpenUrl CrossRef PubMed Web of Science 36. ↵ Kontula O , Haavio-Mannila E . The impact of aging on human sexual activity and sexual desire . J Sex Res . 2009 ; 46 ( 1 ): 46 – 56 . OpenUrl CrossRef PubMed Web of Science 37. ↵ van de Poll-Franse LV , Mols F , Gundy CM , Creutzberg CL , Nout RA , Verdonck-de Leeuw IM , et al. Normative data for the EORTC QLQ-C30 and EORTC-sexuality items in the general Dutch population . Eur J Cancer Oxf Engl 1990 . 2011 Mar ; 47 ( 5 ): 667 – 75 . OpenUrl 38. ↵ Greimel E , Nagele E , Lanceley A , Oberguggenberger AS , Nordin A , Kuljanic K , et al. Psychometric validation of the European Organisation for Research and Treatment of Cancer–Quality of Life Questionnaire Sexual Health (EORTC QLQ-SH22) . Eur J Cancer . 2021 Sep 1; 154 : 235 – 45 . OpenUrl PubMed 39. ↵ Norwegian general population normative data for the European Organization for Research and Treatment of Cancer questionnaires: the Quality of Life Questionnaire-Core 30, the Sexual Health Questionnaire QLQ-SHQ22 and the sexual domains of the QLQ-BR23/BR45 - ScienceDirect [Internet] . [cited 2024 Jun 26]. Available from: https://www.sciencedirect.com/science/article/pii/S0959804923002952 40. ↵ Imran M , Al-Wassia R , Alkhayyat SS , Baig M , Al-Saati BA . Assessment of quality of life (QoL) in breast cancer patients by using EORTC QLQ-C30 and BR-23 questionnaires: A tertiary care center survey in the western region of Saudi Arabia . PLoS ONE . 2019 Jul 10; 14 ( 7 ): e0219093 . OpenUrl PubMed 41. ↵ Barriers to sexual recovery in men with prostate, bladder and colorectal cancer - ScienceDirect [Internet] . [cited 2024 Jun 26]. Available from: https://www.sciencedirect.com/science/article/abs/pii/S1078143920303732 42. ↵ Heinzelbecker J , Kaßmann K , Ernst S , Meyer-Mabileau P , Germanyuk A , Zangana M , et al. Long-term quality of life of testicular cancer survivors differs according to applied adjuvant treatment and tumour type . J Cancer Surviv [Internet] . 2024 Apr 24 [cited 2024 Jun 26]; Available from : doi: 10.1007/s11764-024-01580-9 OpenUrl CrossRef 43. ↵ Hyun JS . Prostate Cancer and Sexual Function . World J Mens Health . 2012 Aug ; 30 ( 2 ): 99 – 107 . OpenUrl PubMed 44. ↵ Emotional distress in cancer patients: the Edinburgh Cancer Centre symptom study | British Journal of Cancer [Internet] . [cited 2024 Jun 13]. Available from: https://www.nature.com/articles/6603626 45. ↵ Moser MT , Künzler A , Nussbeck F , Bargetzi M , Znoj HJ . Higher emotional distress in female partners of cancer patients: prevalence and patient–partner interdependencies in a 3-year cohort . Psychooncology . 2013 ; 22 ( 12 ): 2693 – 701 . OpenUrl PubMed 46. ↵ Ezhova I , Savidge L , Bonnett C , Cassidy J , Okwuokei A , Dickinson T . Barriers to older adults seeking sexual health advice and treatment: A scoping review . Int J Nurs Stud . 2020 Jul 1; 107 : 103566 . OpenUrl PubMed 47. ↵ Haesler E , Bauer M , Fetherstonhaugh D . Sexuality, sexual health and older people: A systematic review of research on the knowledge and attitudes of health professionals . Nurse Educ Today . 2016 May 1; 40 : 57 – 71 . OpenUrl PubMed 48. ↵ Lindau ST , Schumm LP , Laumann EO , Levinson W , O’Muircheartaigh CA , Waite LJ . A Study of Sexuality and Health among Older Adults in the United States . N Engl J Med . 2007 Aug 23; 357 ( 8 ): 762 – 74 . OpenUrl CrossRef PubMed Web of Science 49. ↵ Illness trajectories of incurable solid cancers | The BMJ [Internet] . [cited 2024 Jun 13]. Available from: https://www.bmj.com/content/384/bmj-2023-076625 50. ↵ Seksualiteit en intimiteit: juist ook in de laatste levensfase . 51. ↵ Management of sexual side effects in the surgical oncology practice: A nationwide survey of Dutch surgical oncologists - ScienceDirect [Internet] . [cited 2024 Apr 3]. Available from: https://www.sciencedirect.com/science/article/pii/S0748798315005132 52. ↵ Krouwel EM , Albers LF , Nicolai MPJ , Putter H , Osanto S , Pelger RCM , et al. Discussing Sexual Health in the Medical Oncologist’s Practice: Exploring Current Practice and Challenges . J Cancer Educ . 2020 ; 35 ( 6 ): 1072 – 88 . OpenUrl PubMed 53. ↵ de Vocht H , Hordern A , Notter J , van de Wiel H . Stepped Skills: A team approach towards communication about sexuality and intimacy in cancer and palliative care . Australas Med J . 2011 ; 4 ( 11 ): 610 – 9 . OpenUrl PubMed 54. ↵ Sargant NN , Smallwood N , Finlay F . Sexual history taking: a dying skill? J Palliat Med . 2014 Jul ; 17 ( 7 ): 829 – 31 . OpenUrl PubMed 55. ↵ Wang K , Ariello K , Choi M , Turner A , Wan BA , Yee C , et al. Sexual healthcare for cancer patients receiving palliative care: a narrative review . Ann Palliat Med . 2018 Apr ; 7 ( 2 ): 256 – 64 . OpenUrl PubMed 56. ↵ Arends SAM , van Rossum CE , Eeltink CM , Robertus JE , Schoonmade LJ , Francke AL , et al. Feasibility and effectiveness of communication tools for addressing intimacy and sexuality in patients with cancer: a systematic review . Support Care Cancer . 2024 ; 32 ( 2 ): 109 . OpenUrl PubMed View the discussion thread. Back to top Previous Next Posted July 03, 2025. Download PDF Data/Code Email Thank you for your interest in spreading the word about medRxiv. NOTE: Your email address is requested solely to identify you as the sender of this article. Your Email * Your Name * Send To * Enter multiple addresses on separate lines or separate them with commas. You are going to email the following Sexual health at the end of life in patients with advanced cancer and their partners. Results of a Dutch prospective longitudinal study (eQuiPe) Message Subject (Your Name) has forwarded a page to you from medRxiv Message Body (Your Name) thought you would like to see this page from the medRxiv website. Your Personal Message CAPTCHA This question is for testing whether or not you are a human visitor and to prevent automated spam submissions. Share Sexual health at the end of life in patients with advanced cancer and their partners. Results of a Dutch prospective longitudinal study (eQuiPe) Isabel S. van der Meer , Moyke A.J. Versluis , Heidi P. Fransen , Corien Eeltink , Arnold Baars , Dirkje Sommeijer , Tineke Smilde , Annemieke van der Padt-Pruijsten , Lonneke V. van de Poll-Franse , Natasja J.H. Raijmakers medRxiv 2025.07.03.25330800; doi: https://doi.org/10.1101/2025.07.03.25330800 Share This Article: Copy Citation Tools Sexual health at the end of life in patients with advanced cancer and their partners. Results of a Dutch prospective longitudinal study (eQuiPe) Isabel S. van der Meer , Moyke A.J. Versluis , Heidi P. Fransen , Corien Eeltink , Arnold Baars , Dirkje Sommeijer , Tineke Smilde , Annemieke van der Padt-Pruijsten , Lonneke V. van de Poll-Franse , Natasja J.H. Raijmakers medRxiv 2025.07.03.25330800; doi: https://doi.org/10.1101/2025.07.03.25330800 Citation Manager Formats BibTeX Bookends EasyBib EndNote (tagged) EndNote 8 (xml) Medlars Mendeley Papers RefWorks Tagged Ref Manager RIS Zotero Tweet Widget Facebook Like Google Plus One Subject Area Palliative Medicine Subject Areas All Articles Addiction Medicine (568) Allergy and Immunology (863) Anesthesia (297) Cardiovascular Medicine (4421) Dentistry and Oral Medicine (443) Dermatology (381) Emergency Medicine (606) Endocrinology (including Diabetes Mellitus and Metabolic Disease) (1507) Epidemiology (15212) Forensic Medicine (30) Gastroenterology (1121) Genetic and Genomic Medicine (6581) Geriatric Medicine (667) Health Economics (996) Health Informatics (4520) Health Policy (1366) Health Systems and Quality Improvement (1611) Hematology (539) HIV/AIDS (1264) Infectious Diseases (except HIV/AIDS) (15906) Intensive Care and Critical Care Medicine (1103) Medical Education (620) Medical Ethics (144) Nephrology (667) Neurology (6580) Nursing (345) Nutrition (998) Obstetrics and Gynecology (1141) Occupational and Environmental Health (956) Oncology (3324) Ophthalmology (970) Orthopedics (369) Otolaryngology (420) Pain Medicine (435) Palliative Medicine (129) Pathology (663) Pediatrics (1689) Pharmacology and Therapeutics (691) Primary Care Research (710) Psychiatry and Clinical Psychology (5431) Public and Global Health (9212) Radiology and Imaging (2193) Rehabilitation Medicine and Physical Therapy (1368) Respiratory Medicine (1194) Rheumatology (593) Sexual and Reproductive Health (709) Sports Medicine (529) Surgery (709) Toxicology (99) Transplantation (288) Urology (265) (function(){function c(){var b=a.contentDocument||a.contentWindow.document;if(b){var d=b.createElement('script');d.innerHTML="window.__CF$cv$params={r:'9ff179584b44d04e',t:'MTc3OTM0NDQxMw=='};var a=document.createElement('script');a.src='/cdn-cgi/challenge-platform/scripts/jsd/main.js';document.getElementsByTagName('head')[0].appendChild(a);";b.getElementsByTagName('head')[0].appendChild(d)}}if(document.body){var a=document.createElement('iframe');a.height=1;a.width=1;a.style.position='absolute';a.style.top=0;a.style.left=0;a.style.border='none';a.style.visibility='hidden';document.body.appendChild(a);if('loading'!==document.readyState)c();else if(window.addEventListener)document.addEventListener('DOMContentLoaded',c);else{var e=document.onreadystatechange||function(){};document.onreadystatechange=function(b){e(b);'loading'!==document.readyState&&(document.onreadystatechange=e,c())}}}})();