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. 2024 May 27;32(9):1166–1183. doi: 10.1038/s41431-024-01616-9

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© The Author(s) 2024

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

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Fig. 1 — A mixed methodology was proposed, including both a quantitative and qualitative study. For the quantitative study, all participants had to fill in specific and standardized questionnaires at inclusion (QT0). In order to have 250 respondents, with a 25–30% risk of being lost to follow-up, the number of subjects to include was 330. They also had to fill in questionnaires at time of results (QTR), 6 months after results (QT6), and 12 months after results (QT12). QT0: study data concerning the perception of the interest of SF, the needs and expectations regarding the information given about SF, the selected SF category, as well as the reasons for these choices. QTR - QT6 – QT12: The self-administered questionnaire consisted of closed multiple-choice questions and visual analog scales (VAS) that ranged from 0 (lowest agreement or satisfaction score) to 100 (highest agreement or satisfaction score). Standardized scale: anxiety (STAI-Y A and B), depression (CES-D), and quality of life (QoL; SF12 mental and physical). For the qualitative study, the same 30 participants with SF+ were asked to participate at TR, T6, T12, and 10 participants with negative results were planned to be interviewed at TR. Participants also filled in the questionnaires.