Fex-Can, Fertility and sexuality following cancer
The research program investigates sexual and reproductive 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 Adults (YA), a cohort and intervention study to reduce fertility-related distress and sexual dysfunction among YA one year after diagnosis in young adulthood
- Fex-Can Childhood, a study mapping fertility-related distress and sexual dysfunction in YA childhood cancer survivors and testing an intervention to reduce distress/problems
- Co-creation, long-term collaboration with patients, significant others and health care professionals as research partners
- Fex-Talk, an educational intervention to enhance nurses’ readiness to discuss fertility and sexuality with cancer patients
Fex-Can Young Adults (YA)
The project consists of two parts. In the first part we identify approximately 2000 young persons (19-40 years) one year after being diagnosed with selected diseases (breast cancer, cervical cancer, ovarian cancer, testicular cancer, lymphoma and brain tumors). These are requested to complete questionnaires to measure e.g. sexual function and fertility-related distress and are then followed over several years. A comparison group drawn from the general population is also 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 intervention was found to be feasible (Wiklander et al., 2017) and is evaluated in an ongoing randomized controlled trial (RCT), please see trial registration: http://www.isrctn.com/ISRCTN36621459.
This project is similar to the Fex-Can YA but differs with regard to the samples that are studied and the study design. The Fex-Can Childhood focuses on young adults (19-40 years) who were diagnosed with cancer as children (all diagnoses). In the first part of this project, a group of 5000 childhood cancer survivors will be randomly selected from the National Childhood Cancer Registry and requested to complete questionnaires to measure e.g. sexual function and fertility-related distress.
Both projects will compare their results to an age-matched group drawn from the general population. In the second part of the Fex-Can Childhood a self-help web-based program, similar to the intervention used in Fex-Can YA, will be evaluated using a randomized controlled trial (RC) with a waiting list control group.
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 (video, lecture, role-play, homework assignment, reflection and discussion) in accordance with Kolb’s experiential learning cycle. The Fex-Talk has been included in courses for nurses working in clinical cancer care and students specializing in oncology care to a master’s degree.
The intervention has been evaluated and the results indicate that it increased students’ understanding of patients’ needs related to sex and fertility and appeared helpful in overcoming barriers to initiate discussions about these issues with patients. (Winterling J, Lampic & Wettergren L, submitted manuscript).
Using a participatory research approach, we have for many years involved a group of patients and significant others as research partners, including the development of the web-based intervention of the Fex-Can YA (Winterling et al., 2016). 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.
Kerstin Sjögren Fugl-Meyer
Karin Ekström Smedby
Cancer Research Foundations of Radiumhemmet
Doctoral School in Health Care Sciences
Swedish Cancer Society
Swedish Childhood Cancer Foundation
Swedish Research Council
Swedish Research Council for Health, Working Life and Welfare