Web-based support for young adults with reproductive concerns following cancer : development, process and outcome evaluation of a self-help psychoeducational intervention

AIM: To describe the development process and explain the outcomes of Fex-Can Fertility, a self-help web-based psychoeducational intervention aiming to alleviate reproductive concerns in young adults with cancer. METHODS: The thesis comprises five papers; one cross-sectional survey study of oncologists’ and hematologists’ fertility-related communication (I), one study describing the development of the Fex-Can intervention in a participatory process (II), one feasibility study testing the preliminary version of the web-based program (III), and one RCT testing the effect of the final intervention (IV). Study V was a qualitative interview study examining participants’ experiences in relation to the theory behind the intervention. RESULTS: The results of the five papers are presented according to the structure of a process evaluation. The context of the intervention was one where physicians in cancer care often but not always talk about fertility with their patients. Persons contributing to, requesting and participating in the Fex-Can intervention were predominantly female and well educated. The intervention was developed in a participatory process with people representative of the target group while keeping with theoretical underpinnings in psychology and eHealth technologies. Feasibility testing indicated that the intervention would be acceptable to users, but recruitment and retainment was below the anticipated figures. The RCT was underpowered and had modest outcomes, with significant effects only on concerns about genetic risks and on treatment-related fertility knowledge, where the effect sizes were moderate. Mechanisms of impact were investigated mainly in the interview study. Participants described how the intervention had supported their needs for competence, relatedness and autonomy, but also that some missed tailoring to their specific needs and that keeping up with the intervention was too time-consuming. Degree of activity did not seem to have a clear relationship with effect of the intervention. CONCLUSIONS: Despite meticulous preparation and adherence to every step of the framework for intervention development, the present intervention did not meet our expectations for efficacy in reducing fertility-related distress. Challenges include refining recruitment strategies, finding appropriate main outcome measures and ways to further ensure active participation. Still, the Fex-Can Fertility intervention was appreciated by most users and no adverse events were recorded, suggesting it can be of value if offered as a supplement to standard psychosocial support in clinical cancer care