Examining associations among sexual health, unmet care needs, and distress in breast and gynecologic cancer survivors

Abstract

Heading:

Cancer treatment sexual side effects are pervasive and often persist or worsen without intervention.

Objective:

This study evaluated breast and gynecologic cancer patients’ sexual function, unmet needs related to sexuality, and distress.

Data Sources:

Secondary analyses of a cross-sectional survey study evaluated measures of sexual function (Female Sexual Function Index [FSFI]), unmet needs (Supportive Care Needs Scale), and distress (Patient Health Questionnaire). Chi-square, t-tests, and ANOVAs tested bivariate relationships. Subgroup comparisons were made based on the FSFI sexual dysfunction diagnostic cut-off score (<26.55; lower scores indicate greater dysfunction). A regression model tested associations between sexual function and unmet needs with distress as the outcome variable.

Results:

Participants (N=273; 74% breast cancer) averaged 54.65 years old (SD=12.08) and 3.42 years (SD=4.20) post-diagnosis. The average FSFI score (M=13.55, SD=10.03) was below the cut-off indicating presence of sexual dysfunction; 82.8% of the sample reported clinically significant FSFI scores. Worse sexual function related to older age, being single, lower education, Medicare insurance, menopausal status, and active treatment; treatment-based differences were reported (p’s<.05). In multivariate modeling, worse sexual function (β=−.18, p=.01) and greater unmet sexuality needs (β=.16, p=.01) related to greater distress (F[14,254]=4.035, p<.001).

Conclusion:

Clinically significant sexual dysfunction was common in this cohort of women. Future work should explore reasons behind the high levels of sexual dysfunction and unmet needs in female survivors.

Implications for Nursing Practice:

It is important to routinely screen for sexual health concerns among female cancer survivors at all phases of the cancer trajectory including years post treatment.

A cancer diagnosis and its treatment may impact an individual in a number of ways and alterations in sexual functioning and intimacy are common. It is estimated that between 50-100% of breast and gynecologic cancer survivors experience sexual side effects associated with their treatments.^1,2 Sexual dysfunction after cancer is related to significant distress and quality of life deficits, and reported by patients of all ages, who are partnered and single, and irrespective of gender and sexual identity.^3,4 Without intervention, sexual problems often continue well past the completion of cancer treatment and may affect long-term survivorship, making it critical that such issues be addressed throughout the continuum of cancer care.

The effects of breast and gynecologic cancer treatment on sexual function are multidimensional, impacting physical and psychosocial well-being. Surgery, chemotherapy, radiation, and long-term hormonal therapies, alone or in combination, are all associated with sexual problems.² Treatments may directly impact sexual function, such as causing vulvovaginal dryness and dyspareunia due to hormonal changes or loss of sensation following mastectomy and breast reconstructive surgeries; and indirectly through general treatment effects on body image, physical and emotion well-being (e.g., pain, fatigue, incontinence, anxiety), and changes in relationships with partners (e.g., role changes, loss of intimacy).

Although clinical guidelines state that cancer clinicians should discuss sexual health with patients,^5,6 these conversations rarely occur for a number of reasons, and patients often go without treatment for sexual problems.⁷ Patients report feeling ill-prepared for sexual side effects, and are surprised by the degree to which they are bothered by them.⁷ Patients may wish to talk about sexual problems and treatment options with their healthcare providers but feel unsure or reluctant to bring it up; and likewise, providers report barriers to communication (e.g., time constraints, lack of training or referral options).^8,9 A better understanding of sexual health and care needs across patient subgroups is important to develop targeted interventions that meet the needs of patients throughout the cancer trajectory.

This study involved secondary analyses to evaluate breast and gynecologic cancer patients’ sexual function, unmet care needs related to sexuality, and distress. We also aimed to evaluate differences across sociodemographic and medical factors to better understand which subgroups of patients may be most at risk for sexual health problems and unmet care needs.

Methods

All breast and gynecologic cancer patients seen at the Stanford Women’s Cancer Center between July 2018 and February 2019 were invited to participate in a survey study about cancer needs and concerns. Patients could participate at any point during their disease course, from diagnosis to post-treatment survivorship. Patients provided informed consent, then completed an online survey. Medical variables were extracted from patient records. The study was approved by the Stanford Institutional Review Board (IRB# 45542) and the Stanford Cancer Institute Scientific Review Committee.

Patients

Eligibility criteria included being a female patient at Stanford Women’s Cancer Center with a breast or gynecological cancer diagnosis, 18 years of age or older, able to read and write in English, and able to provide informed consent. Exclusion criteria included any current medical or psychiatric condition that made it impossible or unsafe for the patient to participate per the treating physician’s report (e.g., hospitalization, acute illness).

Measures

Socio-Demographic and Medical Information.

Standard questionnaires collected socio-demographic information. Clinical data were collected via medical chart review.

Sexual Health.

The Female Sexual Function Index (FSFI) is the most widely used screening tool and outcome measure for female sexual function.¹⁰ It is a 19-item scale with six subscales: Desire, Arousal, Lubrication, Orgasm, Satisfaction, and Pain/Discomfort. Items refer to the past four weeks and responses are on 5- or 6-point Likert scales. Higher scores indicate better sexual function in all FSFI domains and the total score ranges from 2 to 36. A validated cut-off score <26.55 has been established to indicate clinically meaningful sexual dysfunction, where low scores indicate worse functioning. The cut-off score is based on analysis from a large heterogeneous sample of women representing a wide range of sexual dysfunction diagnoses and non-dysfunctional controls, and indicates a strong likelihood that women self-reporting scores <26.55 meet clinical criteria for a sexual dysfunction disorder.¹¹

Supportive Care Needs.

The Sexuality subscale of the Supportive Care Needs Scale (SCNS-SF34) is a 3-item assessment of unmet needs related to sexual functioning and relationships.¹² Participants identified whether they had ‘no need’ (i.e., not applicable or the help they needed was already satisfied) or ‘some need’ and indicated whether the need was low, moderate, or high. Total scores ranged from 3-15 with higher scores indicating greater need.

Distress.

The Patient Health Questionnaire (PHQ-4) measures anxiety and depressive symptoms.¹³ The 4-item scale asks respondents to rate the frequency of symptoms on a 4-point Likert from “not at all” to “nearly every day”. PHQ-4 total score ranges from 0 to 12, with a higher score indicating higher psychological distress. Categories of psychological distress include: None 0-2, Mild 3-5, Moderate 6-8, and Severe 9-12.

Statistical Methods

Bivariate relations between sociodemographic and medical factors and study outcomes were assessed using Pearson’s correlation for continuous variables and independent samples t-tests and analysis of variance (ANOVA) for categorical variables. A regression model was specified to examine the extent to which unmet supportive care needs related to sexuality and sexual function (independent variables) related to distress (dependent variable), controlling for relevant sociodemographic and medical factors. Covariates were selected a priori based on the literature¹⁴ and conceptualized relationships with distress, and included age, race, ethnicity, education, relationship status, disease type (breast or gynecologic cancer), disease stage, treatment status, current endocrine therapy, and current use of antidepressant medication. Of note, menopausal status was considered an important factor related to sexual function but was excluded from the model due to concerns about collinearity with age and endocrine therapy. Covariates were entered in step 1, unmet supportive care needs related to sexuality (SCNS-S) and sexual function (FSFI) were entered in step 2, and distress (PHQ-4) was the outcome variable.

Results

Four hundred and eighty-eight women (N=488) with a history of breast and gynecologic cancer diagnoses were invited to participate, 342 (70.1%) consented to study participation, and 273 (79.8%) completed the study. The most common reasons for non-completion included passive withdrawal (no reason given) and “too busy.”

Sociodemographic and medical characteristics are reported in Table 1. Women averaged 54.65 years old (SD=12.08) and most identified as heterosexual (95%) and were partnered (71%). The sample was mostly White (69%), 24% was Asian (mostly Chinese, Asian Indian, and Filipino), and 10% identified as another race (i.e., Black, American Indian or Alaskan Native, or Native Hawaiian or other Pacific Islander; groups combined due to small numbers); and 12% were Hispanic ethnicity. Breast cancer was the most common diagnosis (74%), average time since diagnosis was 3.42 years (SD=4.20), and 71% were postmenopausal per chart review. Twenty-one percent (n=58) of women were on an anti-depressant medication at the time of the study based on chart review. Average distress levels in this cohort of women were in the ‘mild’ range (M=2.73, SD=2.73) with 30% of women reporting mild distress, 9.9% with moderate distress, and 4.4% with severe distress levels.

Table 1.

Sociodemographic and Medical Characteristics.

	Total N=273
	M(SD) or n(%)
Sociodemographics
Age (years)	54.65 (SD=12.08), range: 24-82
Racea
White	189 (69.2%)
Asianb	65 (23.8%)
Black or African American	6 (2.2%)
American Indian or Alaska Native	6 (2.2%)
Native Hawaiian or other Pacific Islander	1 (.4%)
Other or Unknown	15 (5.5%)
Ethnicity
Hispanic/Latinac	32 (11.7%)
Non-Hispanic/Latino	240 (87.9%)
Education
High school, vocational, or less than a college degree	83 (30.4%)
College or graduate degree	190 (69.6%)
Employment status (at time of study participation)
Employed full- or part-time	121 (44.3%)
Unemployed, currently looking for work	5 (1.8%)
Unemployed, not currently looking for work	18 (6.6%)
Unable to work due to illness or disability	42 (15.4%)
Student	2 (.7%)
Retired	56 (20.5%)
Homemaker	26 (9.5%)
Unable to work due to caring for home or family	3 (1.1%)
Other (e.g., volunteer work)	5 (1.8%)
Income (annual household)
<$79,999	65 (23.8%)
$80,000 - $149,999	66 (24.2%)
>$150,000	99 (36.3%)
Prefer not to answer or don’t know	43 (15.7%)
Insurancea
Private	209 (76.6%)
Medicare	70 (25.6%)
Medicaid	21 (7.7%)
Military coverage	9 (3.3%)
Unsure	3 (1.1%)
No insurance	1 (.4%)
Relationship Status
Partnered	193 (70.7%)
Single (incl. divorced or widowed)	79 (28.9%)
Sexual Orientation
Heterosexual	259 (94.9%)
Identify as a sexual minority (LGBTQ)	9 (3.3%)
Prefer not to answer	4 (1.5%)
Medical Characteristics
Time since diagnosis (years)	3.42 (4.20)
Diagnosisd
Breast cancer	201 (73.6%)
Gynecologic cancere	72 (26.4%)
Stage of disease
Stage 0	20 (7.3%)
Stage 1	96 (35.2%)
Stage 2	65 (23.8%)
Stage 3	59 (21.6%)
Stage 4	31 (11.4%)
Treatmenta
Surgery	250 (91.5%)
Chemotherapy, active	32 (11.7%)
Chemotherapy, previous	166 (60.8%)
Radiation, active	4 (1.5%)
Radiation, previous	145 (53.1%)
Endocrine therapy, active	102 (68.2%)
Endocrine therapy, previous	73 (26.7%)
Treatment status
Active treatment (excl. endocrine therapy)	75 (27.5%)
Completed treatment	197 (72.2%)

incl.=including

excl.=excluding

LGBTQ=lesbian, gay, bisexual, transgender, or queer

^aCategories not mutually exclusive.

^bAsian culture or origin included (not mutually exclusive): Chinese (n=28), Indian (n=15), Filipino (n=12), Vietnamese (n=3), Japanese (n=5), Korean (n=1), and Pakistani (n=1).

^cHispanic/Latina culture or origin included (not mutually exclusive): Mexican (n=24), Spanish (n=3), Salvadoran (n=2), Nicaraguan (n=2), Argentina (n=1), Brazil (n=1), Chile (n=1), Peruvian (n=1), and Portuguese (n=1).

^dThere were no participants with diagnoses of both breast and gynecologic cancers.

^eGynecologic cancers included ovarian (n=34), cervical (n=6), uterine/endometrial (n=20), vaginal (n=1), vulvar (n=3), primary peritoneal cancer (n=1), fallopian tube carcinoma/malignant neoplasm (n=3), and other (n=4).

^fSurgeries consisted of lumpectomy (n=91), single mastectomy (n=51), double mastectomy (n=52), lymph node dissection in the breast (n=81), breast reconstructive surgery (n=70), hysterectomy (n=55), bilateral salpingo-oophorectomy (n=62), bilateral oophorectomy (n=61), omentectomy (n=34), abdominal tumor debulking (n=27), and lymph node dissection in the pelvis (n=29).

Sexual Function

Overall levels of sexual function were well below the clinical cut-off (FSFI <26.55) indicating sexual dysfunction (FSFI M=13.55, SD=10.03; Figure 1), with a majority (82.8%) of the sample reporting clinically significant FSFI scores (Table 2). Worse sexual function was related to older age (r=−.23, p<.001), being single (t[269]=−5.07, p<.001), education less than a college degree (vs. college degree or higher; t[270]=−2.23, p=.03), Medicare insurance (F[3,264]=3.55, p=.02), menopausal status (t[268]=2.67, p=.01), and being in active treatment (t[270]=−2.24, p=.03). History of treatments involving radiation (t[270]=2.35, p=.02), targeted anti-HER2 therapy (t[270]=2.02, p=.04), and prior endocrine therapy (t[270]=1.98, p=.002) were also related to worse sexual function; and, at the trend level, surgery involving bilateral mastectomy (t[270]=−1.87, p=.06) or bilateral salpingo-oophorectomy (t[270]=−1.86, p=.07), and greater time since treatment (r=−.12, p=.06). FSFI total scores did not differ by race (F[2,269]=1.70, p=.19) or ethnicity (t[269]=−1.48, p=.15) with all groups averaging clinically significant scores. Overall, 87% of Whites, 82% of Asians, 65% of Hispanics, and 62% of an ‘Other’ group scored below the FSFI diagnostic cut-off, indicating presence of sexual dysfunction. There were no differences in sexual function based on cancer diagnosis (breast vs. gynecologic cancers; t[270]=−.663, p=.51) or between women taking vs. not taking anti-depressant medications (t[270]=1.09, p=.28).

Figure 1.

Histogram of the Female Sexual Function Index (FSFI).

Table 2.

Sexual function levels and unmet supportive care needs in breast and gynecologic cancer survivors.

Variable Items	M (SD), range		Clinically significant sexual dysfunction n (%)
Sexual Function (FSFI)	13.55 (10.03), 2 – 34.5		226 (82.8%)
		Level of Need
	M (SD), range	No need, not applicable n (%)	No need, Satisfied n (%)	Low Need n (%)	Moderate Need n (%)	High Need n (%)
Supportive Care Needs (SCNS – Sexuality Needs subscale)	5.67 (3.04), 3 – 15
In the last month, what was your level of need for help with:
changes in sexual feelings		122 (44.7%)	63 (23.1%)	53 (19.4%)	23 (8.4%)	12 (4.4%)
changes in your sexual relationships		140 (51.3%)	54 (19.8%)	47 (17.2%)	18 (6.6%)	14 (5.1%)
being given information about sexual relationships		169 (61.9%)	53 (19.4%)	28 (10.3%)	17 (6.2%)	6 (2.2%)

Unmet Supportive Care Needs

Forty percent of women reported at least one unmet supportive care need related to sexuality (including low, medium, and high need; Table 2). Across items, 19%-32% of women reported unmet needs related to changes in sexual feelings, sexual relationships, and information about sexual relationships. Notably, 19%-23% reported prior need for help with sexual changes and were satisfied with the help they received (i.e., no current unmet need). Greater unmet needs related to younger age (r=−.27, p<.001), being partnered (vs. single; t[270]=−4.18, p<.001), and prior chemotherapy (t[271]=−2.02, p=.04); and, at the trend level, those with private insurance had greater unmet needs than those with government funded insurance (t(267)=1.90, p=.06). No other sociodemographic or medical variable related to unmet care needs including cancer diagnosis (p’s>.10).

Sexual Function, Unmet Supportive Care Needs, and Distress

In bivariate analysis, overall sexual function was unrelated to unmet care needs related to sexuality (r=.04, p=.57), but was related to higher distress (r=−.16, p=.01). Greater unmet sexual care needs also related to higher distress (r=.15, p=.01). Women classified as having clinically significant sexual dysfunction (FSFI scores <26.55) reported average distress levels classified as ‘mild’, whereas those without sexual dysfunction reported distress levels classified as ‘normal.’ Thirty-five percent of women reported both clinically significant sexual dysfunction and at least one unmet supportive care need related to sexuality; and these women reported significantly higher distress, classified in the ‘moderate’ range, than women without sexual dysfunction and no unmet care needs who reported ‘mild’ distress (t[271]=−2.03, p=.04).

Further analysis of sexual function domains (FSFI subscales) indicated that sexual satisfaction was the only significant correlate of unmet care needs (r=−.12, p=.04). Satisfaction was also the strongest correlate of distress (r=−.23, p<.001), compared to other sexual domains. Arousal (r=−.13, p=.04), orgasm (r=−.13, p=.03), and pain (r=−.13, p=.04) subscales related to distress in expected directions; lubrication was related at the trend level (r=−.11, p=.08) and desire was unrelated (r=−.09, p=.15).

Finally, in multivariate modeling controlling for a priori covariates, worse sexual function (β=−.18, p=.01) and greater unmet sexual health care needs (β=.16, p=.01) were associated with higher distress levels (Table 3). Younger age (β=−.17, p=.01), being on adjuvant endocrine therapy (β=−.19, p=.001), and taking antidepressant medication (β=.18, p=.002) also related to higher levels of distress in this model. The model accounted for 18% of the variance in distress (F[14,254]=4.035, p<.001).

Table 3.

Lower sexual function and greater unmet sexual care needs relate to higher levels of distress.

Distress (DV)
F[13,255]=4.23, p<.001; R2=.18, R2change=.05
Step	Variablea	B	SE	β	t	Sig.
1	Constant	5.05	1.05
	Age	−.04	.02	−.17	−2.61	.01
	Asian race (ref=White)a	−.56	.41	−.09	−1.37	.17
	Other race (ref=White)a	.03	.59	.004	.06	.96
	Hispanic/Latina (ref=Non-Hispanic/Latina)	−.04	.58	−.01	−.07	.94
	Single (ref=partnered)	−.38	.38	−.06	−1.01	.31
	Education, less than college degree (ref=college degree or higher)	.03	.38	.01	.07	.94
	Gynecologic cancer (ref=breast cancer)	.43	.38	.07	1.13	.26
	Stage 4 disease (ref=stages 0-3)	.59	.52	.07	1.15	.25
	Active treatment (ref=completed treatment)	−.22	.41	−.04	−.53	.59
	Endocrine therapy (ref=no)	−.85	.40	−.14	−2.12	.04
	Antidepressant medication (ref=no)	1.12	.40	.17	2.83	.01
2	Sexual Function (FSFI)	−.05	.02	−.17	−2.58	.01
	Unmet Sexual Care Needs	.14	.06	.16	2.51	.01

Discussion

Clinically significant sexual dysfunction was common in this sample of breast and gynecologic cancer survivors that averaged over three years post-diagnosis. Low sexual satisfaction was the strongest correlate of patients’ unmet supportive care needs and distress levels and may be a more important indicator of needs than overall sexual functioning. Controlling for a number of demographic and medical covariates including use of antidepressant medication, worse sexual functioning and greater unmet care needs related to higher levels of distress. Without intervention and unlike other side effects of treatment, sexual problems tend to persist or worsen over time.¹⁵ Findings highlight the importance of routine screening for sexual health concerns among female cancer survivors at all phases of the cancer trajectory including years past the end of treatment.

Sexual problems were highly prevalent in this cohort of women, with 82.8% reporting clinically significant sexual dysfunction scores, which is consistent with previously reported prevalence rates.^16,17 Self-reported scores on the FSFI below the clinically significant cut-off indicate a strong likelihood for meeting diagnostic criteria for a sexual dysfunction disorder.¹⁸ Due to small numbers, we were limited in our ability to examine experiences across racial/ethnic and non-heterosexual subgroups. However, one strength of this study was the relatively large proportion of Asian participants (24% of the sample) in which 82% reported sexual dysfunction; comparable to non-Hispanic White women (87%), who are more often represented in research. Over 60% of women across all racial and ethnicity subgroups reported clinically significant sexual dysfunction and there were no differences in rates of unmet supportive care needs. Aligned with prior calls to action,^19,20 findings highlight the need for targeted, culturally-sensitive screening and assessment practices to be incorporated as a routinized part of care with appropriate referral and access to treatments.

We also found that sexual satisfaction (or lack thereof) may be a particularly important indicator of supportive care needs and experiences of distress compared to other sexual domains or overall levels of functioning. Sexual satisfaction refers to women’s subjective experiences of sexual well-being and has been shown to be strongly correlated with distress, though both are still independent constructs.²¹ In fact, research suggests only a minority of sexual difficulties tend to result in significant levels of distress, and that overall sexual functioning and personal distress may be weakly related in women.^22,23 In a population-based study, female cancer survivors reported sexual dissatisfaction more than five years post-treatment even when sexual function levels were similar to non-cancer controls.¹

Factors leading to increased distress in response to sexual dysfunction in non-cancer populations include disruption of sexual activity, decreased pleasure, depression, anxiety, and overall emotional wellbeing, and disruptions in relationship intimacy.^24-26 Physical aspects of sexual functioning have been shown to be poor predictors of distress for women.²⁷ Cancer survivors may have additional concerns that negatively impact subjective experiences including changes in body image, difficulty coping with other side effects (e.g., incontinence, pain, or fatigue), heightened stress levels, and relationship challenges stemming from cancer-related difficulties and life disruptions.¹⁵ Findings have important implications for screening practices within oncology practice, suggesting the need to understand patients’ perceptions of sexual changes and sources of distress, rather than merely capturing physical symptomatology. Based in the biopsychosocial model of sexual health,^4,28 both physical and psychosocial aspects of sexuality should be considered when developing a treatment plan or deciding on referral options (e.g., for medical treatment and/or psychological support).

In this study, 19-32% of women reported unmet supportive care needs related to changes in sexual feelings and relationships; whereas an additional 19-23% had previously needed support and were satisfied with the help they received. In prior research of gynecologic cancer survivors, only 36% of women reported that a provider had ever asked them about sexual problems and <15% had ever tried solutions for sexual problems, yet 19-29% were interested in learning about treatment options (e.g., seeing a medical doctor, counselor or psychologist, class or support group, and self-help resources).²⁹ Similar rates of unmet needs are observed among breast cancer survivors.³⁰ Women report low self-efficacy in being able to manage sexual problems after cancer, which relates to poorer psychosocial quality of life,³¹ suggesting that referral to appropriate treatment and support is likely needed to resolve sexual issues when they occur. Although oncology providers generally recognized that sexual health is an important clinical issue, and 70% of women with cancer want their medical team to bring up the topic,³² communication about sexual health is still not a part of routine care.³³ Not all women experiencing sexual problems are distressed or looking for help. Nevertheless, routine screening and referral is necessary to capture those in need and interested in receiving support.

Levels of sexual function did not differ based on antidepressant use. Notably, in this study, antidepressants may have been prescribed for the management of vasomotor symptoms such as hot flashes (e.g., Venlafaxine³⁴), particularly among patients on endocrine therapy, rather than for the treatment of a mood disorder. Antidepressants may also be used for other cancer-related physical symptoms including fatigue, executive functions, sleep problems, and nicotine dependence.³⁵ It is important to recognize, however, the complex interplay between sexual health and mental health. Sexual dysfunction and negative affect are closely intertwined in a bidirectional relationship, often comorbid, and may share common etiological factors.³⁶ Both depression and use of antidepressant medications are generally considered risk factors for sexual dysfunction including in cancer survivors (e.g., desire, arousal, and orgasm disorders);^29,37 though some antidepressants may be useful in the treatment of low sexual desire (e.g., norepinephrine-dopamine reuptake inhibitor and bupropion).^38,39 A strength of our study is that associations between sexual function and distress controlled for the use of antidepressant medication use; 21% of women were on antidepressant medication at the time of the study. Screening and treatment of sexual problems must account for depression and antidepressant use as possible etiological or exacerbating factors and incorporate relevant considerations into the treatment approach.

A limitation of this study is that we were unable to distinguish between women who were sexually active versus inactive and reasons for sexual inactivity (e.g., lack of interest vs. lack of partner). These were secondary analyses of a larger study aimed to assess a range of psychosocial outcomes and measurement of sexual health was limited. Lower scores on the FSFI may reflect, in part, the scoring algorithm in which sexual inactivity due to sexual dysfunction versus other non-related factors (e.g., lack of a partner) is confounded.^18,40 Two of the four items of the FSFI Sexual Satisfaction subscale also refer to satisfaction with sexual activity and relationships with a partner; potentially failing to capture the experiences of single women and sexual activities that don’t involve a partner. Likewise, our measurement of unmet supportive care needs related to sexuality was limited to three questions; two of which referred to sexual relationships. There may be a number of reasons why women are not sexually active, and it is important to identify those who are interested in becoming sexually active to address problems and barriers. Single women are less likely to have conversations with providers about sexual side effects and less likely to receive treatment.⁴¹

Sexuality is an important part of quality of life, irrespective of whether one is in a relationship, which should be reflected in systems of measurement, screening, and treatment. For clinical use, there are validated, brief screener tools to quickly assess sexual problems and patients’ interest in receiving treatment. The three-item Sexual Symptom Checklist was adapted for female cancer survivors to be used either as a self-report checklist or as a guide for clinical conversations.⁴² Scripts for clinicians have also been published to facilitate sexual health discussions⁴³ and numerous resources exist to guide treatments,^2,44,45 including for breast⁴⁶ and gynecologic⁴⁷ cancer survivors specifically. Bober et al. provide practical strategies to help providers in their clinical inquiry about sexual health including a review of the 5As model (Ask, Advise, Assess, Assist, and Arrange Follow-up) to ensure both efficient interactions for providers and that patients receive clear information and resources/treatment when needed.⁴³ Initiating conversations and normalizing the experience of sexual problems after cancer may go a long way in making survivors feel validated and more comfortable seeking help. There are frontline treatments that providers may start before or concurrent to referring for specialized care. For example, vaginal dryness is one of the most common and distressing problems for female cancer survivors, often accompanied with burning, itching, or chafing and pain with sex, and a conversation about the use of vaginal moisturizers and lubricants may be useful. It is also important to assemble a referral network that ideally includes a gynecologist, a pelvic floor physical therapist, a mental health practitioner, and potentially a reproductive endocrinologist and urogynecology specialist; ideally all of whom have experience working with female cancer survivors. There are several professional organizations that have resources to find providers based on location and area of expertise such as the International Society for the Study of Women’s Sexual Health (www.isswsh.org) and the North American Menopause Society (www.menopause.org). Finally, providers may access (or refer patients to) educational resources such as those from the American Cancer Society (i.e., ‘Sex and the Adult Female with Cancer’; www.cancer.org) and the Scientific Network on Female Sexual Health and Cancer, which has resources for providers and survivors (www.cancersexnetwork.org).

Other limitations to this study include the cross-sectional design and lack of diversity with respect to racial/ethnic identity (which is representative of the patient population at this center) and sexual orientation. The sample was heterogeneous with respect to cancer diagnosis and time point in the cancer journey (from active treatment to post-treatment survivorship). We were limited in our ability to examine subgroup differences based on patient characteristics due to small sample sizes. It was also unknown when antidepressant medications were prescribed (e.g., before or after cancer diagnosis), and whether they were prescribed to address depressive symptoms, vasomotor symptoms associated with menopause, or another off-label ailment. We were also limited in our evaluation of psychosocial and quality of life challenges associated with sexual side effects. Nevertheless, this study has numerous strengths including a unique population of clinically based cancer survivors who responded to the survey at high rates, clinically representative sample of Asian/Asian American survivors, large sample size of respondents, and a focus on an important survivorship topic that is often not addressed in clinical care.

Conclusion

Patients often feel unprepared to address treatment-related sexual side effects, which may have a number of associated psychosocial challenges. This study documented high rates of sexual dysfunction and a substantial subgroup of women reporting unmet supportive care needs related to sexual health. Many survivors would benefit from education and intervention to resolve physical maladies that underlie sexual difficulties and, equally, to address psychosocial factors that affect sexuality and intimacy. Further work is needed to better understand specific concerns, expectations, and preferences for communication about sexual health in the context of cancer care and to develop and disseminate communication guidelines and individual- or group-based intervention approaches that are appropriate and acceptable to women from diverse backgrounds.