Project Description

Dr. Jenna Sopfe
Emerging Science Research Grant
– Survivorship

University of Colorado, Denver


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Dr. Sopfe’s Research

Dr. Jenna Sopfe’s research supports the high value PCRF places on quality of life survivorship. This study will help ensure that the futures of these children are both long and healthy.

“Over 80% of children diagnosed with childhood cancer now survive their disease. However, many of these children still suffer from long-term effects of their diagnosis or treatment, which unfortunately results in decreased quality of life. One area of concern is that childhood cancer survivors (CCS) experience sexual dysfunction (SD), which occurs in roughly 30-50% of CCS. Unfortunately, this is a common problem but one that is often not recognized or treated adequately. While adolescent and young adult (AYA) cancer patients and survivors place a high priority on addressing sexual health concerns and report a desire to discuss sexual and reproductive health with their oncologists, these needs are largely unmet. AYA CCS report that they are hesitant to initiate conversations and prefer their provider take the lead. However, pediatric oncologists and internists report barriers to addressing sexual health needs, including lack of education and knowledge/experience, lack of resources/referrals, parents/family presence, concerns of patient discomfort, clinician discomfort, lack of rapport, and low priority/limited time. Given these challenges, an approach to screening AYA CCS for SD in a way that is effective and acceptable to patients is necessary. For example, it is possible that a written screening tool would be helpful in improving routine surveillance for SD in this population. However, there are no SD screening tools validated in the AYA general or cancer survivor populations. Research is needed to develop a deliverable patient-centered approach to screening for SD, particularly in AYA CCS, who may be especially vulnerable to discomfort related to discussions of sexuality and sexual function.

This proposal aims address the unmet of need of recognition and treatment of SD in AYA CCS by exploring patient preferences regarding the timing and method of evaluation for SD as well as by evaluating use of an existing tool that has been previously validated in older adult cancer populations. This will be done by using qualitative research methods such as semi-structured interviews and by having participants answer the questions of the aforementioned screening tool while “Thinking Aloud”. Upon completion of this study, we will be prepared to develop a deliverable, patient-centered approach to screening for SD in AYA CCS. Future studies may include modifying the screening tool as may be identified by this study, and will evaluate a new screening. With improved screening and detection of SD, we can better treat this important and common concern in AYA CCS. Further, by describing how to better recognize this problem, this study will also provide the background for future research to understand why this problem is occurring and how to best treat it. Ultimately, we expect that this research will lead to improved quality of life for CCS.”

-Dr. Sopfe, Lay Abstract


Some people say that children make up 10% of our cancer population, but they are 100% of our future! ~ Dr. Alex Huang, Case Western