Breaking the Silence: A New Tool for Discussing Sexual Health in Cancer Care

Research shows that sexual dysfunction affects between 20% and 50% of childhood cancer survivors. Unfortunately, sexual health, and specifically sexual function, are often neglected topics for adolescents and teens during cancer treatment and into adulthood survivorship. But pediatric oncologist Jenna Demedis, MD, is leading the way for care teams and patients to have open conversations about their sexual well-being that lead to treatment options and a fuller, happier life.

From the beginning of care, Dr. Demedis and other providers in the Center for Cancer and Blood Disorders have regular conversations around sexual health with patients, aiming to reach them before problems arise. However, this isn’t the case with every care center and is a known issue nationwide. Patients and providers cite many barriers to talking about sexual health and function including shortage of time, discomfort, low priority or even lack of knowledge. This prompted Dr. Demedis and her research team to develop a patient-focused standardized screening process to evaluate and treat sexual dysfunction.

“We know nationwide that patients are not getting the care that they need for this and, in fact, are not even educated on their potential risks for sexual health impacts, including function and otherwise,” Dr. Demedis says. “So, my research aims to fix that issue.”

Sexual health is a wide-ranging topic, including everything from contraception to sexual identity — all things that can be impacted by cancer and its treatments. Dr. Demedis’ research focuses on sexual function that refers to desire, interest in sex, ability to have sex and other complications that can impact how sex is going.

“I think we within oncology are really attuned to treating the cancer and side effects of chemotherapy that are obvious, like nausea, vomiting, hair loss, count drops, skin issues, whatever it may be,” Dr. Demedis says. “But we don't think about some of these other topics or know that we can do something to help. So maybe it feels like there's no point in even asking, but these things matter.”

Designing the screening tool

Through a co-designed process that included patients, providers and multidisciplinary specialists, researchers gathered feedback via interviews and tested how screenings could fit into clinical workflows in a way that felt safe and practical. The team used a questionnaire that had previously been validated in older cancer populations but had not been studied in younger patients. To make screening a seamless part of care, the questionnaire was also integrated into the electronic medical record system. Researchers focused on key concerns for both providers and patients, such as privacy, comfort, education and access to resources.

Dr. Demedis notes that patients are typically roomed separately from their caregivers beginning around age 15 regardless of screening, helping teens practice self-advocacy and build confidence speaking directly with their doctors. A screening can also happen at this time and helps create space for adolescent patients to discuss sensitive concerns privately with their care team — something experts see as an important part of growing independence in their healthcare journey.

Team members in the Neuro-Oncology Program at Children’s Colorado helped to further test and refine the screening process, culminating in changes that made sexual function screening work better for patients and providers. With positive feedback from patients that their care teams are asking questions and showing an interest in this area of their journey, teams across all facets of cancer care now consistently screen patients during routine care visits whenever timing and treatment needs allow. This process was rolled out to all oncology clinics and survivorship care at Children’s Colorado, including The HOPE Cancer and Bone Marrow Transplantation Survivorship Program. Further, this approach includes new referral pathways that connect patients with experts, including urology, endocrinology and gynecology, to help ensure concerns are addressed quickly and with designated specialists.

For many adolescents and young adults, conversations about sexual health can feel difficult to start, but by offering structured, age-appropriate screenings, providers can better identify concerns and support patients as they develop the skills needed in their survivorship journey.