Perspectives on Self-Reported Sexual Dysfunction by Palliative Care Patients with Cancer

Abstract

Objectives:

The aim of this study was to investigate from the perspective of palliative care (PC) patients with cancer, the frequency of sexual dysfunction (SD) and their views regarding the communication with their physicians.

Design, Setting, and Participants:

Adult PC patients with cancer seen at a Supportive Care Clinic in the United States were invited to participate in a survey about SD.

Results:

A total of 100 patients completed the survey. Only 29% would like to discuss SD with a clinician, even though 81% experienced it in the previous year, and 55% were dissatisfied with their sexual function. Only 20% reported that their clinician ever asked them about SD. Most (79%) considered appropriate to be inquired about SD, but only 32% thought it should always be asked.

Conclusions:

Our findings do not support the notion that PC specialists should always initiate a discussion about SD with their PC patients with cancer.

Key Message

Palliative care patients with cancer frequently experience sexual dysfunction. Our study showed that only a third of these patients wanted to discuss it with their specialist. For the majority, addressing other symptoms was more important.

Introduction

Sexual health is frequently negatively impacted by cancer and its treatment, with estimates of sexual dysfunction (SD) in this population of 40%–100%.¹ In a previous study,² we found that most palliative care (PC) providers rarely talk about SD; being the main reasons that patients did not bring it up, there was not enough time, or a third party was present. The purpose of this study was to investigate from the perspective of PC patients with cancer, the frequency of SD and their views regarding the communication with their physicians.

Methods

Patients seen at the Supportive Care Clinic, University of Texas MD Anderson Cancer Center were invited to answer a voluntary and anonymous questionnaire about self-reported SD, the impact of cancer on their intimacy, and the communication with the PC specialist (Supplementary Appendix SA1). The survey was offered to PC patients, older or equal than 18, and with a diagnosis of cancer. Only those participants who completed the full questionnaire were included. The research staff contacted the patients either in person, over the phone, or using any HIPAA compliant institutionally approved video-conferencing platform. Informed consent was obtained by sending an electronic form, explaining the research, and asking the patients to sign the consent form electronically or reply “I consent” through the electronic medical record. The survey questions were read to the patients by the research staff and their responses were entered directly into REDCap (a secure web application for building and managing online surveys and databases). Given the sensitive nature of the questionnaire, it was emphasized that patients could stop the survey at any time, and referrals to the Supportive care clinic were made available if needed. The institutional review board approved the survey and protocol.

Data collected included demographics, cancer diagnosis and treatments, which were summarized as percentages, means with the standard deviation, or medians with the 25–75 interquartile range (IQR). Psychometric validation was not performed. All questions were developed after reviewing the literature, and they were refined after multiple reviews with a final consensus blue-print meeting attended by all the investigators. Comparisons of categorical variables were calculated using the chi-squared test or Fisher’s exact test.

Results

Participants

A total of 286 patients met the requirements to participate in the survey; 186 were contacted at random of whom 104 patients were enrolled between February 6 and August 4, 2023. Four patients were excluded; one expressed that the questions did not apply, one was not interested, one did not follow up and one because of emotional distress). So, 100 patients were included and their demographics are presented in Table 1.

Table 1.

Demographics and Clinical Information of the 100 Patients Included in the Study

Mean age (SD)	55 (13)
Females (%)	54^a
Race (%)
White or Caucasian	90
Black or African-American	7
Asian	1
Other	2
Hispanic (%)	16
Marital status (%)
Married or lives with a partner	77
Other status	23
Eastern cooperative oncology group performance status (IQR)	1 (1–2)
Cancer diagnosis^b (%)
Gastrointestinal	17
Hematological	17
Breast	16
Genitourinary	13
Head and neck	10
Gynecological	6
Respiratory	6
Melanoma	5
Sarcoma	2
Unknown primary	2
Other	6
Treatment received in the 6 months before the survey (%)
Chemotherapy	44
Surgery	20
Immunotherapy	16
Radiation	14
Hormonal therapy	11
Targeted therapy	8
Stem cell transplant	1

39 women were post-menopausal, of whom 23 were because of the cancer treatment.

Excluding the patients with hematological malignancies, sarcomas, and glioblastomas, 61/78 (78%) patients had metastatic disease.

IQR, 25–75 interquartile range; SD, standard deviation.

Sexual satisfaction

Most patients (55%) were not satisfied with their sexual function, 81% experienced SD in the year before the survey, and 68% responded that they did not have sexual problems before becoming ill. On a 1–10 scale, they ranked their median (IQR) sexual life as 8 (6–10) before the cancer diagnosis and the current sexual life as 6 (4–8). In the six months prior to the survey, the sexual life was much or a little bit worse for 47 patients, while for 35 it was neither worse nor better.

Perception of SD

We explored how patients perceived the importance of SD compared to other symptoms (pain, fatigue, shortness of breath, anxiety, and depression) (Table 2). Factors that were perceived as worsening the current sexual desire included medications in 33/59 participants, treatments (chemotherapy, radiation or surgery) in 61/80, miscommunication with the partner in 31/66, urinary incontinence in 17/24, weigh loss in 18/36, body image in 45/64, tube/lines (nephrostomy, colostomy, urinary catheter) in 12/18, and oxygen in 4/12. Finally, 47% of the respondents felt emotionally distressed with their body image.

Table 2.

Comparison of Sexual Dysfunction to Other Symptoms (A) and Its Impact on Patients’ Wellbeing (B)

	Much worse or a little bit worse (%)	Neither worse nor better (%)	A little bit better or much better (%)
A. My sexual problems are, compared to my:
Pain	28	57	15
Fatigue	32	43	25
Shortness of breath	29	55	16
Sleep	24	58	18
Anxiety^a	25	49	26
Depression	31	49	20

	Strongly agree or agree (%)	Neither agree nor disagree (%)	Disagree or strongly disagree (%)
B. My sexual problems make my:
Depression worse	39	25	36
Anxiety worse^a	28	34	37
Pain worse	14	27	59
Fatigue worse	13	31	56
Wellbeing worse	39	25	36

One answer missing.

Communication about SD

Only 29 patients (29%) responded that they would like to discuss SD with a provider. This was similar for both genders (only 15/54 females and 14/46 males gave a positive answer, p = 0.827) but a non-significant trend was noted in younger patients who were interested in talking about SD when compared to older patients (≤ 45: 15/27; 46–55: 7/25; 56–66: 5/23; ≥ 67: 5/25; p = 0.194)). In addition, only 32% thought that clinicians should always ask about SD.

Only 20% of the participants responded that a clinician ever asked them about SD; but most (79%) considered it appropriate to be asked about it (Table 3A). Table 3B presents the patients’ opinions regarding the reasons for not discussing SD with their healthcare professionals. When asked with whom they would feel more comfortable discussing SD, 53% responded with the supportive care team, 50% with the oncologist, 48% with the primary care physician, 47% with a counselor/psychologist, 29% with a nurse, 8% with a chaplain and 6% with other.

Table 3.

Communication of Sexual Dysfunction with the Health Provider

	Strongly agree or agree (%)	Neither agree nor disagree (%)	Disagree or strongly disagree (%)
A. Provider responsibilities
The provider should always ask about my sexual problems	32	20	48
Is it appropriate for a provider to ask about sexual problems?	79	11	10
Providers should ask about sexual problems only if patients bring them up first	36	11	53
Should sexual problems be documented in the medical record?	63	18	19
B. Patients do not discuss sexual problems because
Don’t feel comfortable with the opposite gender	12	19	69
Don’t feel comfortable with same gender^a	6	16	78
My religion/culture background does not allow it	1	16	83
Lack of time	17	9	74
Fear of provider taking it personally	2	9	89
A family member is present during the encounter^a	29	10	61
Fear of discrimination^a	1	5	94
I want to keep it private^b	37	8	55
Discussing my other symptoms (pain, fatigue, weight loss, etc.) is more important^a	65	6	29

1 answer missing.

4 answers missing.

Discussion

Whereas a large body of literature exists on SD in cancer survivors,^3,4 there are only a handful of studies in PC patients with cancer.^5–15 Most are semi structured interviews (two used a hermeneutic phenomenological approach,^6,11) that were recorded and later analyzed; some included the patient’s partners,⁶ or carers, health care providers,^6,15 and patients with conditions other than cancer or non-PC patients.^5,7,8,13 To our knowledge, during the last 20 years only 287 oncologic PC patients were enrolled in these studies. One of the largest investigations so far is the report by Kelemen with 97 PC patients of whom only 42 had cancer.⁷ If we aggregate all the publications, the gender was predominantly female (approximately 1.7 female to male ratio). All the studies were conducted in highly developed countries: Australia,¹⁵ Canada,¹⁰ Italy,¹² Netherlands,⁶ United Kingdom,⁵ and the United States.^7,9,11 Only two studies indicated the race/ethnicity of the participants; in the Ananth study, 52/64 (81%) were white,⁵ while in the Kelemen study, 69/97 (71%) were African American.⁷ Finally, all the publications but one,¹¹ included patients with a diverse range of cancer diagnoses. With these caveats in mind, the reported findings were quite similar. Most PC patients with cancer experienced SD, for most sexuality and intimacy continued to be important at the end of life, the majority considered it important to talk about it, and very few clinicians ever addressed SD.

In our study, although 81% of the respondents experienced SD in the year before the survey when its importance was compared to other symptoms, SD was perceived as neither worse nor better, indicating that SD was not a priority. This finding is similar to the study by Kwan et al who found that sexual life was rated as the least important aspect of the quality of life in patients with chronic pain, supporting the notion of adaptation to the impact of chronic illness on sexual function.¹⁶ In addition, 64% responded that discussing other symptoms was more important and only 32% responded that clinicians should always ask about SD. Furthermore, only 29% would like to discuss SD with a provider. Most of the previous studies assumed that the patients would like to discuss SD with the providers. Only two publications described a clear response to this issue. In Ananth study, significantly more oncological patients (palliative and non-palliative) wanted the opportunity to discuss their sexual lives compared to healthy controls (the proportions not given).⁵ And Vitrano reported that 86% of the patients considered it important to talk about sexuality, in particular with an experienced operator while 14% disagreed.¹² We found exactly the opposite, and the explanation remains unclear and speculative. Hordern,^14,15 conducted semi structured interviews with 50 patients treated for cancer in Australia and identified five different clusters of responses. Two of them were: “Survival is more important than my sexuality” meaning that “better to be alive than dead” and “Trust in the expert” implying that “if it was important they would have told me and I do not want to make the health professionals uncomfortable”. Accordingly, less reflective patients embraced these clusters in contrast to more reflective patients who favored exploring choices and negotiating communication.

Several limitations need to be noted. Although, to our knowledge, our study is the largest ever conducted in PC patients with cancer, it remains a small investigation of a convenience sample at a single tertiary institution, not allowing for a diagnostic analysis. Although information about the stage of the cancer was not collected, most patients with solid malignancies had metastasis indicating advanced disease. The delicate nature of the topic may have resulted in selection bias of the participants (It is likely, for instance, that we have underestimated the proportion of participants with SD because the patients who decline the survey may have SD but do not want to talk about it), and a social desirability bias might be present as well. Our cohort, as in previous research, lacks enough diversity (not only race and ethnicity but also LGBTQ populations) to make the results extrapolable to other groups, cultures, or non-developed countries.

As a conclusion, SD remains a very common problem among PC patients with cancer. Surprisingly, only a third of the respondents would like to discuss SD with their clinician, and almost two-thirds considered it more important to address other symptoms. Although recognize that our results need to be replicated, these findings do not support the notion that PC specialists should always initiate a discussion about SD with patients with advanced cancer. Future studies should try to better identify those PC patients, who are open or interested in talking about SD, and should include multiple cultural backgrounds, more diverse populations, and patients from non-developed countries.

Footnotes

Authors’ Contributions

P.S.B.: conceptualization, design, formal analysis, original draft preparation. S.A.: conceptualization, formal analysis. A.R.M., G.J.P., M.E., and P.S.: methodology and acquisition of the data. M.C.: methodology and statistical analysis. M.O.D.G.: supervision, reviewing and editing. E.B.: conceptualization, supervision, reviewing and editing.

Author Disclosure Statement

There are no competing financial interests.

Funding Information

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Supplementary Material

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Supplementary Material

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