Sexual health in young adult survivors of childhood cancer : prevalence, predictors and web-based support

Aim: The overall aim of this thesis was to investigate the prevalence of sexual activity and dysfunction in young adult survivors (19-40 years) of childhood cancer in comparison to the general population. A further aim was to test the efficacy and usage of a psychoeducational web-based intervention (Fex-Can Sex) to alleviate sexual problems among survivors.

Methods: This thesis comprises four studies; one population-based observational survey study (n=2,546) to investigate sexual dysfunction (study I) and sexual activity (study II) in comparison to a group of young adults from the general population (n=819), one randomized controlled trial (n=278) testing the efficacy of a 12-week web-based psychoeducational intervention targeting sexual dysfunction (study III). Study IV was a mixed methods study that examined the participants’ (n=322) experiences of sexuality and fertility through the content of posts made in the discussion forum included within the intervention.

Results: Approximately half of female and one-third of male childhood cancer survivors report sexual dysfunction. Intensive cancer treatment, negative body image, and emotional distress were associated with higher risk of sexual dysfunction (study I). Most survivors were sexually active, however, to a lesser extent with a partner than the comparison group. Only a small proportion of survivors had never experienced sex with a partner. Among both female and male survivors, younger age at the time of the study, cranial irradiation, and not currently working or studying were factors associated with never having had partner sex (study II). The Fex-Can Sex intervention showed limited effects and participants had demonstrated an overall low adherence. However, those with more sexual dysfunction at baseline (both the intervention group and the control group) improved in several domains of sexual dysfunction over time (study III). Half of the intervention group accessed the discussion forum, most without writing any posts. The content of discussion forum posts included experience of a changed body, concerns about fertility and family building, and a longing for support (study IV).

Conclusion: Childhood cancer survivors, particularly those who have undergone intensive cancer treatment, are at a higher risk of reporting negative effects on their sex life. Therefore, sexuality is recommended to be addressed in follow-up care. Web-based interventions may have the potential to improve sexual dysfunction. However, further development of the web-based intervention is necessary to increase adherence by including more interactive components and the use of more stricter inclusion criteria.

List of scientific papers

I. Hovén, E., Fagerkvist, K., Jahnukainen, K., Ljungman, L., Lähteenmäki, P.M., Axelsson, O., Lampic, C., Wettergren, L. (2021). Sexual dysfunction in young adult survivors of childhood cancer – A population-based study. European Journal of Cancer. 154, 147-156.
https://doi.org/10.1016/j.ejca.2021.06.014

II. Fagerkvist, K., Haavisto, A., Jahnukainen, K., Axelsson, O., Lampic, C., Wettergren, L. Sexual activity in young adult survivors of childhood cancer – A population-based study. [Manuscript]

III. Fagerkvist, K., Jahnukainen, K., Ljungman, L., Lampic, C., Wettergren, L. (2024). Efficacy of a web-based intervention, Fex-Can Sex, in young adult survivors of childhood cancer: A randomized controlled trial. Internet Interventions. 36.
https://doi.org/10.1016/j.invent.2024.100739

IV. Gottvall, M.*, Fagerkvist, K.*, Lampic, C., Wettergren, L. (2022). Including a discussion forum in a web-based intervention on fertility and sexuality – Usage and content. Internet Interventions. 29. *Shared first authorship.
https://doi.org/10.1016/j.invent.2022.100559