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Empowering Patients to Talk about Sex

By Katie Kiley Brown, Manager, Corporate Communications, NCCN

NCCN Foundation Young Investigator Award Spotlight

This feature article is part of an ongoing installment highlighting the research and accomplishments of past recipients of the NCCN Foundation Young Investigator Awards. In 2017, the spotlight series focuses on the 2015 NCCN Foundation Young Investigator Awardees whose research was presented during the NCCN 22nd Annual Conference.

How discussing sexual dysfunction with patients can lead to better overall quality of life

For allogeneic hematopoietic stem cell transplant (HCT) survivors—people with blood cancers treated using stem cells from a donor—sexual dysfunction is a common, but rarely discussed, side effect that affects the quality of life of patients and their partners. As many as one-third of transplant recipients report sexual dysfunction that leads to distress. Such complications include the inability to obtain and erection, vaginal pain with intercourse, negative body image, and decreased sex drive and arousal.

Areej El-Jawahri, MD
Photo Credit: Massachusetts General Hospital Cancer Center

To combat this issue, Areej El-Jawahri, MD, a transplant oncologist at Massachusetts General Hospital Cancer Center, set out to test the feasibility of screening and intervening on sexual dysfunction in this population with a multimodal intervention. The intervention seeks to also educate and empower patients to address their sexual health concerns.

El-Jawahri was a 2015 recipient of the NCCN Foundation® Young Investigator Award, which funds promising researchers early in their careers.

The normalcy of dysfunction

El-Jawahri and her colleagues at Massachusetts General Hospital screened 150 HCT survivors who were at least three months out from transplant. To screen them, the researchers used National Comprehensive Cancer Network® (NCCN®) recommendation from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Survivorship to identify patients who have sexual dysfunction. Specifically, patients were asked 1) “Do you have problems with sexual function;” and 2) “Are these problems causing you distress?” Of the 150 survivors, to date 49 people have screened positive for sexual dysfunction that caused distress. These patients took part in therapeutic interventions aimed at resolving the particular issue they faced.

“We noticed that basically everyone who screened positive wanted to participate and completed the intervention and subsequent follow-up visits. We assessed patient sexual dysfunction at enrollment, and at the six-month follow-up and we saw a definite improvement in overall sexual function and interest and with specific issues such as orgasm, lubrication, and achieving an erection. Dr. El-Jawahri also found that, “Patients also experience improvement in their quality of life and a trend toward lower depression symptoms after the intervention,” she said.

Importantly, the intervention was delivered by oncology clinicians integrated within the transplant clinic.  Following participation in the intervention, most patients did not require referral for additional expertise to address sexual dysfunction. This underscores that many of the issues affecting sexual function in these survivors can easily be addressed with adequate training in the transplant clinic.

To engage patients and encourage them to speak about their individual situations, the team initiated a training protocol for transplant doctors and nurses covering how to screen for distress and dysfunction, the proper terminology to use, and how to ask and answer questions.

According to El-Jawahri, most patients are not comfortable bringing up sexual dysfunction with their transplant team. However, when the issue is brought up independently, HCT survivors are reassured that what they experience is normal and the issue can be addressed.

“One of the most important aspects of this study actually goes beyond information—it’s educating, normalizing, and empowering patients to talk about sex. Many patients feel that their condition is abnormal. Addressing and normalizing sexual dysfunction for a patient makes them more comfortable and at ease,” said El-Jawahri.

Additionally, for a many of the intervention visits, patients’ partners were present. This approach, El-Jawahri said, allowed patients and their significant others to tackle these issues as a team in a comfortable and non-judgmental environment.

Moving beyond the transplant clinic

One aspect that makes El-Jawahri’s study unique is the generally younger age of HCT patients compared with the general cancer population. With an average age of 52, the study cohort represents a potentially spryer patient population; however, participants were as old as 73. She noted that many older patients were eager to participate and indeed benefitted from intervention.

Sexual dysfunction is a side effect that spans far beyond the HCT population. As many as 30-40% of patients and survivors of all cancer types report experiencing side effects that inhibit their sex life.

El-Jawahri hopes that at the culmination of the study, her team will have demonstrated a model for intervention that can be established easily across the cancer center—not only in the transplant clinic and not only at academic institutions.

“It’s my hope to effectively implement this model across a larger patient population—in a randomized trial—including both autologous and allogeneic transplant survivors. I believe we will show that it enhances sexual function, improves quality of life, and increases intimacy between patients and their partners,” said El-Jawahri.

Guiding the course of supportive care advancement

In 2015, El-Jawahri was one of five grant recipients through the NCCN Foundation Young Investigator Award program, which funded her research for this project. The NCCN Young Investigator Awards provide vital funding to some of the nation’s top next-generation cancer researchers guiding the course of treatment innovation and advancement. Moreover, the program makes it possible for junior faculty to develop the unique skillset necessary in a today’s competitive research environment by enabling them to balance research and clinical duties early in their careers, as well as introducing them to a network of senior investigators from leading cancer centers.

Through the grant program, young investigators, like El-Jawahri, are nominated by leaders at NCCN Member Institutions for their dedication to discovering cutting-edge breakthroughs and interventions in cancer care.

“I’m very much committed to continuing to develop supportive, palliative, and psychosocial interventions to help patients with and survivors of cancer. This funding from the NCCN Foundation has enabled me to focus on this aspect of my career and indeed has been a stepping stone for seeking NIH funding designing larger studies in the future,” said El-Jawahri.

El-Jawahri credits the grant from NCCN Foundation with allowing her to build the methodology skills in how to develop an intervention, take it to the pilot stage, and, she hopes, into a randomized clinical trial.

“In this funding environment, it’s sometimes hard for younger faculty to have the opportunity to pursue their interests, but when you pursue your passion, you get better results. Providing the opportunity and resources to young faculty allows us to build a skillset that leads to successful studies and, most importantly, better outcomes for patients,” said El-Jawahri.

Dr. El-Jawahri’s study, A Multimodal Intervention to Address Sexual Dysfinction in Hematopoetic Stem Cell Transplant (HCT) Survivors: A Feasibility Study, was presented at the General Poster Session during the NCCN 22nd Annual Conference in March 2017.

More information is available at JNCCN.org.


Areej El-Jawahri, MD, is Assistant Professor of Medicine at Harvard Medical School, Director of the Bone Marrow Transplant Survivorship Program at the Massachusetts General Hospital, and Associate Director of Massachusetts General Hospital Cancer Center Survivorship Program. Dr. El-Jawahri’s clinical and research interests focus on improving the quality of life and care for patients with hematologic malignancies and their families, and addressing their palliative, supportive care and survivorship needs.