The partners of patients with prostate cancer grapple with their own quality of life issues that impact their sexual wellbeing, a new study shows. Using the first questionnaire of its kind, the authors uncovered key challenges faced by patients’ wives and female partners, including difficulties with communication about their sexual needs, inadequate sexual health counseling by physicians, and feelings of isolation and loss of intimacy.

Prostate cancer is one of the most common forms of cancer in American men, and both the condition and its treatments are well known to cause side effects ranging from erectile dysfunction to decreased libido. Although their impact on patients’ partners has been recognized, the details of their struggles had until now remained poorly understood and were not easily assessed. As a result, partners do not receive appropriate support from healthcare providers.

To shed light on and help address these concerns, a team led by researchers at NYU Langone Health’s Perlmutter Cancer Center developed the questionnaire to evaluate the sexual health of 200 female partners from across the United States. Respondents consistently cited “loss of connection” as a couple, high levels of distress, and poor communication with their spouses and healthcare providers about the impact of sexual dysfunction from prostate cancer treatment. In addition, they showed higher levels of depression than American women in the same age groups who had been evaluated in past studies.

“Our findings highlight the substantial impact of prostate cancer on female partners of patients,” said study lead author and urologist Stacy Loeb, MD. “Couples may benefit from referral to a sexual medicine specialist, sex therapy, support groups or mental health services that focus on loss and grief, and sexual rehabilitation,” added Dr. Loeb, a professor in the Departments of Urology and Population Health at NYU Grossman School of Medicine and a member of Perlmutter Cancer Center.

In an earlier study published in 2022, Dr. Loeb and her team analyzed online posts written by female partners of prostate cancer survivors that expressed concerns about their sex lives and relationships. Many said they felt invisible to the healthcare system. The lack of tools available to measure the extent of these issues and track them over time led the team to design a formal questionnaire that can help clinicians gauge partners’ sexual health and refer them for support.

A report on this tool was published online May 18 in the journal European Urology Oncology.

To develop the questionnaire, the researchers drafted an initial assessment using data from the 2022 investigation and hosted meetings with experts to refine the questions. Besides covering communication, distress, and feelings about loss of intimacy and connection, the survey also explored satisfaction with nonpenetrative sexual activity and willingness to expand the variety of their sexual activity.

Next, the researchers held 90-minute interviews with a dozen female partners to further identify common experiences and determine how effectively the questions captured their sexual health concerns. Based on the responses, the researchers further refined the survey.

The team then administered the questionnaire to 200 female partners recruited nationwide from clinical sites, online health communities, and prostate cancer organizations. Subsequently, using a statistical analysis, they arrived at 19 questions that best captured partners’ concerns and determined that the survey was reliable and valid (meaning the results actually represent what they are intended to measure).

According to the authors, the average scores for each question of the partner survey can serve as a baseline of comparison for others when thinking about their sexual health.

“Our hope is that clinicians will use our survey to help patients and their partners identify issues in their sex lives that are impacted by this common cancer and to help determine what support services could be useful,” added Dr. Loeb. “When thinking about living with prostate cancer, this is really a couples’ disease, and partners’ unmet needs should be part of the conversation.”

She notes that the team has developed a website with the Prostate Cancer Foundation that provides the survey free of charge, as well as additional sexual health resources that address the key issues related to recovering sexual intimacy after prostate cancer treatment.

According to Dr. Loeb, the researchers next plan to explore the impact of the illness on the sex lives of male and nonbinary partners.

Funding for the study was provided by United States Department of Defense grant W81XWH2010699 and by National Institutes of Health grant KL2TR001446.

In addition to Dr. Loeb, other NYU Langone investigators involved in the study are Natasha Gupta, MD, MSc; Nataliya Byrne, BA; and Tatiana Sanchez Nolasco, MPH. Other study investigators included Daniela Wittmann, PhD, and Laura Zebib, MPH, at the University of Michigan in Ann Arbor; Christian Nelson, PhD, and John Mulhall, MD, at Memorial Sloan Kettering Cancer Center in New York City; Carolyn Salter, MD, at Madigan Army Medical Center in Tacoma, Washington; and Leigh Garrett, PhD, at Inspire Online Health Community in Arlington, Virginia. Elizabeth Schofield, PhD, at Memorial Sloan Kettering Cancer Center, served as study senior author.

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