Fex-Can, Fertility and sexuality following cancer

Overall aim

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: 1) Fex-Can Young Adult (YA), a cohort and intervention study to reduce fertility-related distress and sexual dysfunction among YA one year after diagnosis in young adulthood; 2) 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; 3) Co-creation, long-term collaboration with patients, significant others and health care professionals as research partners; 4) Fex-Talk, an educational intervention to enhance nurses’ readiness to discuss fertility and sexuality with cancer patients. For publications from the Fex-Can program, please see information at Claudia Lampic and Lena Wettergren.

Fex-Can Young Adult (YA)

The project consists of two parts. In the first part we identified approximately 1500 young persons (19-40 years) 1.5 years after being diagnosed with selected diseases (breast cancer, cervical cancer, ovarian cancer, testicular cancer, lymphoma and brain tumors). They were requested to complete questionnaires to measure e.g. sexual function and fertility-related distress and are being 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 was found to be feasible (Wiklander et al., 2017) and is evaluated in an ongoing randomized controlled trial (RCT), see study protocol (Lampic et al., 2019).

Fex-Can Childhood

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 approximately 4500 childhood cancer survivors were identified 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, is evaluated using a randomized controlled trial (RCT) with a waiting list control group, see study protocol (Ljungman et al. 2020).

Fex-Talk

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 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, results of which are presented in the article “What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration”. 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.

Project leaders 

Claudia Lampic

Lecturer senior

Lena Wettergren

Lecturer senior

Funding

Cancer Research Foundations of Radiumhemmet

Doctoral School in Health Care Sciences

KID-funding

Swedish Cancer Society 

Swedish Childhood Cancer Foundation

Vårdal Foundation

Swedish Research Council

Swedish Research Council for Health, Working Life and Welfare