Many cancer treatments have a negative impact on fertility and sexuality, which may interfere with important life goals such as finding a partner and building a family. The research program Fex-Can focuses on the life situation of young adults who have been treated for cancer. The Fex-Can is conducted in collaboration with Uppsala University and Karolinska Institutet.
The research program investigates sexual, reproductive and psychological health in young adults who have undergone treatment for cancer and evaluates the effect of a self-help web-based intervention on sexual problems and fertility-related distress. The program includes four projects:
Fex-Can Young Adult: cohort and intervention study following diagnosis in young adulthood
Fex-Can Childhood: national study on survivors of childhood cancer
Co-creation: research collaboration with patients and significant others
Fex-Talk: educational intervention to enhance care givers’ readiness to discuss fertility and sexuality
1. Fex-Can Young Adult
Fex-Can Young Adult consists of two parts. In the first part we identified >1500 young persons (19-40 years) 1,5 years after being diagnosed with selected cancers. They were requested to complete questionnaires to measure e.g. sexual function and fertility-related distress and are being followed over several years (Wettergren et al., 2020). A comparison group from the general population is included to outline if cancer patients have more problems than young adults in general. In the project’s second part a self-help web-based intervention to alleviate sexual problems and fertility-related distress is tested. The intervention was found to be feasible (Wiklander et al., 2017) and is evaluated in a randomized controlled trial (RCT) (Lampic et al., 2019).
2. Fex-Can Childhood
Fex-Can Childhood focuses on young adults (19-40 years) who were diagnosed with cancer as children. In the first part of this project, a national sample of >4500 childhood cancer survivors were requested to complete questionnaires to measure e.g. sexual function and fertility-related distress. In the second part of the project a self-help web-based program is evaluated using an RCT design (Ljungman et al., 2020).
Co-creation: Using a participatory research approach, we have for many years involved a group of patients and significant others as research partners. Together we conducted an interview study about our experiences of collaborating (Hovén et al., 2020). As a next step we plan to build a corresponding long-term collaboration with a group of health care professionals. We hope this will increase the relevance of our research and improve uptake and impact of the interventions.
Fex-Talk is an educational intervention we developed to enhance nurses’ readiness to discuss fertility and sexuality issues with cancer patients. It includes different components (e.g. video, lecture, role-play, homework assignment) and has been included in courses for nurses in clinical cancer care. The Fex-Talk has been evaluated and the results indicate that it increased students’ understanding of patients’ needs related to sex and fertility and appeared helpful to overcome barriers to initiate discussions about these issues (Winterling et al., 2020).