Abstract
AbstractPatients with hereditary breast and ovarian cancer (HBOC) are not only concerned about their own health but also about that of their children, grandchildren, and other relatives. Therefore, they have specific needs for information and support. During genetic counseling guidance is provided to HBOC patients and other individuals who may be at risk for familial cancer. The purpose of the study was to identify the needs of HBOC patients during the genetic counseling process that could be addressed by digital solutions. Nine semi-structured qualitative interviews were conducted. Overall, the patients appreciated the personal contact with human geneticists as an especially positive factor in the genetic counseling process. However, patients noted the following needs (1) support in the time following genetic counseling, (2) support before genetic counseling by collecting own and familial medical information, (3) Need for contact options to support services, (4) Need for patient-friendly medical information, (5) Wish for administration-related components in a support app. The results will inform the development of a patient-centered mobile support app.
Funder
Medizinische Hochschule Hannover (MHH)
Publisher
Springer Science and Business Media LLC
Reference37 articles.
1. Bonadona V, Saltel P, Desseigne F, Mignotte H, Saurin JC, Lasset C (2002) Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: reactions and behavior after the disclosure of a positive test result. Cancer Epidemiol Biomark Prev 11:97–104 PMID: 11815406
2. Brewer HR, Jones ME, Schoemaker MJ, Ashworth A, Swerdlow AJ (2017) Family history and risk of breast cancer: an analysis accounting for family structure. Breast Cancer Res Treat 165(1):193–200. https://doi.org/10.1007/s10549-017-4325-2
3. Clarke V, Braun V (2013) Successful qualitative research: a practical guide for beginners. SAGE
4. Daly MB, Pal T, Berry MP (2021) NCCN Clinical Practice Guidelines in Oncology: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic, Version 2.2021. https://www.nccn.org/professionals/physician_gls/pdf/genetics_bop.pdf
5. Döring N (2023) Forschungsmethoden und evaluation in den Sozial- Und Humanwissenschaften. 6 Aufl 2022 edn. Springer Berlin Heidelberg; Springer Berlin Heidelberg, Berlin, Heidelberg; Berlin, Heidelberg