Discussing Sexual Function with Dialysis Patients: Identifying and Overcoming Barriers

Sexual dysfunction in people with kidney failure is common, due to physical and psychological factors. Some physical factors include changes in hormones, damage to nerves and blood vessels—and drug and dialysis side effects. Psychological factors include anxiety and depression.¹ In a 2022 meta-analysis, sexual dysfunction (SD) in dialysis and transplant patients was found in in 94 studies of men and 47 studies of women.² The table below shows the impact of standard HD, PD, and transplant on SD.

Social Work Practice & Discussions of Patient Sexual Functioning

Discussing a patient’s sexual functioning is an essential element of nephrology social work (NSW) practice. When I was an NSW working in dialysis, I always asked patients about their sexual functioning as part of my psychosocial assessment. I learned more than 25 years ago that low physical and mental functioning scores predict hospitalization and death,^3,4 and in 2003 that poor sexual functioning in dialysis patients is linked with a higher risk of death.⁵ Because of this, I advocated with other NSWs for CMS to require clinics to assess patients’ health-related quality of life (HRQOL) and suggested that the KDQOL-36 be used.

In 2008 Medicare updated the Conditions for Coverage for Dialysis Facilities. They required clinics to assess dialysis patients’ “psychosocial status” using a standardized mental and physical assessment tool. Dori Schatell and I wrote a document that described the rationale for using the KDQOL-36 and how to administer, score, interpret, report and use the results for patient care planning and clinic-level quality assessment and performance improvement (QAPI). Medical Education Institute (MEI) developed the online KDQOL Complete program that scores surveys, provides patient and clinic reports, and even includes time-saving tools. I have received calls and emails from NSW’s asking about administering the survey, and was surprised when some social workers asked if they had to ask the question on the KDQOL-36 about how bothered the patient was with his/her sex life—even if they had no problem asking other personal questions. This made me want to learn what prevented these discussions and how to overcome barriers.

The only study I am aware of about NSW’s discussions with patients about their sexual functioning is a study of members of the Canadian Association of Nephrology Social Workers (CANSW). NSWs answered 16 questions using Survey Money. A total of 65 NSWs responded, and they worked with CKD, hemodialysis, peritoneal dialysis, and transplant patients. Of the respondents, 92.9% reported their role included discussing sexual functioning. However, only 52.4% initiated that discussion. Of those, only 44.4% discussed this topic even “occasionally.” None of the respondents reported initiating a discussion of sexual functioning routinely. Sexuality and sexual functioning have a significant impact on overall well-being and relationships. However, patients rarely mention concern about sexual functioning with their social worker or anyone else on the dialysis team unless asked.⁶ When patients don’t ask, sexual functioning problems can’t be identified or addressed.

Barriers Preventing Social Workers from Discussing Sexual Functioning

The NSWs who responded to the survey identified these barriers:

• Lack of privacy – 18 NSWs (42.8%)

• My discomfort – 9 NSWs (21.4%)

• My perception of their discomfort – 13 NSWs (30.9%)

• Lack of knowledge on my part – 13 NSWs (30.9%)

• Other – 12 NSWs (28.5%)

  • Lack of time — 1 NSW (8.3%)

  • Other psychosocial issues take priority (e.g., financial concerns) — 1 NSW (8.3%)

  • Patients do not identify it as an issue – 6 NSWs (50.0%)

  • Perception that it is not an issue for the particular population of patients that the respondent served (e.g., senior patients) – 2 (16.7%)

  • Topic addressed by other colleagues – 2 NSWs (16.7%)

Shockingly, one NSW reported that the clinic’s nephrologists did not think sexual functioning was an important issue!

Topics NSW Should Discuss with Home Dialysis Patients

Home dialysis patients may be bothered with their sex life in some of the same ways as in-center patients beyond physical and psychosocial problems. And, they may also have unique concerns.

Some questions the NSW could ask home dialysis patients include:

• Are they in a sexual relationship—or do they wish to be?

• How comfortable are they with their bodies and/or what body image concerns do they have? (e.g., surgical scars from HD or PD access placement, weight gain and abdominal extension with PD, etc.)

• How do any body image concerns affect their current intimate relationship or the potential for establishing an intimate relationship?

• How supportive is their partner of their physical limits and sexual needs, and how supportive are they of their spouse’s sexual needs?

• How has dialysis affected their interest in and energy to engage in sexual intimacy?

• Do women patients have pain with intercourse, which may be caused by vaginal dryness?

• Do male patients have a problem achieving and maintaining an erection?

• How does sexual intimacy fit with their dialysis treatment schedule?

• What do they do to protect their vascular or PD access and how do they avoid alarms from pressure on HD or PD lines during sex?

Knowing the answers to these questions can help the NSW address them through education, counseling, and/or referral to appropriate professionals. There are resources an NSW can use to address patients’ sexual concerns.

Addressing Lack of Privacy

Dialysis clinics often have 10-15 in-center patients in one large treatment room with patients close enough to each other to hear what is said. And, staff may interrupt conversations to monitor patients and adjust machines. There isn’t even privacy during home training, as the home training nurse is almost always present. Ways to overcome privacy concerns include:

• Encourage in-center and home dialysis patients to complete the KDQOL-36 independently in the clinic, or arrange to help complete the survey before or after dialysis or using telehealth. Unfortunately, allowing patients to take a survey home makes it impossible to know who completed it, and the likelihood of return is low. KDQOL Complete can help save the social worker’s time if s/he must help a patient with the survey.

• Report results to patients shortly after the survey is completed. Ask each patient where s/he would prefer to discuss results—on dialysis or during training with others around, in a private area, or using telehealth. Discussing KDQOL-36 results gives the NSW entrée to initiate a conversation about this important topic whether or not the patient reported being bothered.

Increasing Comfort & Knowledge

If an NSW doesn’t feel comfortable initiating a discussion with patients about their sexual functioning due to limited knowledge about that topic or not knowing what language to use, it may help to seek out resources like these:

• The American Sexual Health Association has generic information about sexual functioning.

• The Institute for Sex Education & Enlightenment has online classes and webinars.

• Look on Google for “Human Sexuality” courses; many universities offer them.

• Learn language to use when talking with patients about sexual functioning:

  • Abrams, M. (2022a). 47 Terms That Describe Sexual Attraction, Behavior, and Orientation. Healthline.

  • Abrams, M. (2022b). 68 Terms That Describe Gender Identity and Expression. Healthline.

• Keep up to date on research by searching PubMed for journal articles that address sexuality and kidney disease, including factors that affect sexual functioning.

• Look for kidney-specific online or in-person education on sexuality:

  • Kidney Commute CE Study Guide: Sexuality & Kidney Disease -

  • Sexuality and Fertility: Kidney School Module 11

• Check out these selected KidneyViews blogs about sexuality:

  • View from the Chair: What Patients Want to Know About Sex on PD and Are Afraid to Ask

  • Pregnancy and CKD: Making It Possible, And the Legacy of Susan Hou

  • Let’s Talk About Sex (and Dialysis)

  • Connecting While Connected or “Hooking Up on Hemo”

  • Sex, Meds, and CKD

NSWs can help patients feel more comfortable discussing sexual concerns if the discussion becomes a routine part of the psychosocial assessment and the review of the KDQOL-36 results can trigger that discussion. Normalizing the discussion of sex is one way to reduce stigma and encourage patients to share concerns about this sensitive topic. Patients have values based on how they were raised and their religion and/or culture. As NSWs, we need to pay attention to patients’ cues and respect their boundaries.

NSWs are the most appropriate person to initiate a discussion of sexual functioning. However, each of us needs to be aware of how our own beliefs and biases about sexuality and the limitations of our expertise could impact our patients. You may want to reach out to a colleague or supervisor or seek personal counseling. As NSWs, we need to recognize when a patient’s need is greater than our own expertise. At that point, we can refer a patient to a physician and/or other provider who specializes in sex therapy to treat sexual dysfunction.

Conclusion

Expect it to take time, effort, ongoing education, and self-reflection to become comfortable talking about sexuality and sexual functioning with dialysis patients. NSWs can better meet patients’ sexual health needs when we recognize and address our own discomfort, seek education or training to understand how kidney failure and treatment impacts patient’s sexual functioning, use words patients understand, and provide the support patients need to feel safe discussing this sensitive topic. NSWs who do this will build trusting relationships with patients while helping to improve their sexual functioning and enhancing their overall health-related quality of life.