Fertility preservation in female cancer patients : psychological impact and introduction of an online decision aid

The aim of the research project presented with this cumulative dissertation was to get a deeper insight into psychological aspects of young female cancer patients concerning fertility preservation (FP) and the development of an online decision aid (DA). A mixed-method approach was applied to the first part of the research project with an online survey and focus groups. Objectives were to assess the significance of fertility and fertility-related knowledge in these patients, their attitude towards FP, their decisional conflict and helpful support tools.
Article 1 “Knowledge about and attitude towards fertility preservation in young female cancer patients: a cross-sectional, binational survey” and article 2 “Young female cancer patients’ decisional conflict about fertility preservation – results of an online survey” comprise results of the online survey about fertility issues, which was completed by 155 former female cancer patients from German and English speaking countries. Summarizing the findings, knowledge about FP was limited but positive attitudes towards FP significantly outweighed negative attitudes. Decisional conflict was considerable, especially with regard to missing information and support. However, decisional conflict was significantly lower in patients who discussed the risk of infertility with a health professional, who underwent a FP procedure and in patients who had a university level education. To enrich these quantitative data, four focus groups with 12 female cancer survivors were conducted, which are described in article 3 “Decision-making about fertility preservation – qualitative data on young cancer patients’ attitudes and needs”. Results confirmed previously gained data. The significance of fertility was high and attitude towards FP positive. Religious and ethical reservations were not negligible. Patients wished for more support and specific tools would be appreciated. These results lead to the conclusion that greater emphasis should be placed on counselling opportunities as well as on the provision of adequate information and supporting material. It is hypothesized that this may be a possible strategy to lower decisional conflict and improve fertility-related knowledge. Therefore, as second part of the research project, we developed an online DA for female cancer patients concerning their decision whether to opt for FP or not. Article 4 “Fertility preservation in young female cancer patients – development and pilot testing of an online decision aid” describes the development of the DA and the pilot study, which was conducted to get first data on the effectiveness and acceptability of the DA. The study was a prospective consecutive study with 40 female cancer patients. Data showed that the DA was considered helpful for decision-making and recommendable by nearly all participants. Knowledge about FP was high regarding FP techniques women went for. Mean decisional conflict was moderate whereas 20% showed scores above the threshold for high decisional conflict. A current randomized controlled trial is ongoing to confirm these data. Our research project has demonstrated that distress and burden due to the decision making process is considerable. Therefore, a deeper insight into psychological aspects of patients who have to make their decisions on FP is an important goal for research aiming to provide support in this challenging situation. In order to allow patients to make an informed choice, referring patients to fertility counselling is inevitable. The here presented DA enriches existing health service offers for young cancer patients by providing additional support for patients as well as professionals.