Rippinger, Nathalie and Fischer, Christine and Haun, Markus W. and Rhiem, Kerstin and Grill, Sabine and Kiechle, Marion and Cremer, Friedrich W. and Kast, Karin and Nguyen, Huu P. and Ditsch, Nina and Kratz, Christian P. and Vogel, Julia and Speiser, Dorothee and Hettmer, Simone and Glimm, Hanno and Froehling, Stefan and Jaeger, Dirk and Seitz, Stephan and Hahne, Andrea and Maatouk, Imad and Sutter, Christian and Schmutzler, Rita K. and Dikow, Nicola and Schott, Sarah (2020) Cancer surveillance and distress among adult pathogenic TP53 germline variant carriers in Germany: A multicenter feasibility and acceptance survey. CANCER, 126 (17). pp. 4032-4041. ISSN 0008-543X, 1097-0142
Full text not available from this repository. (Request a copy)Abstract
Background Li-Fraumeni syndrome (LFS) is a high-risk cancer predisposition syndrome caused by pathogenic germline variants ofTP53. Cancer surveillance has noted a significant survival advantage in individuals with LFS; however, little is known about the feasibility, acceptance, and psychosocial effects of such a program. Methods PathogenicTP53germline variant carriers completed a 7-part questionnaire evaluating sociodemographics, cancer history, surveillance participation, reasons for nonadherence, worries, and distress adapted from the Cancer Worry Scale. Counselees' common concerns and suggestions were assessed in MAXQDA Analytics Pro 12. Results Forty-nine participants (46 females and 3 males), aged 40.0 +/- 12.6 years, formed the study population; 43 (88%) had a personal cancer history (including multiple cancers in 10 [20%]). Forty-three individuals participated (88%) in surveillance during the study or formerly. Willingness to undergo surveillance was influenced by satisfaction with genetic testing and counseling (P = .019 [Fisher-Yates test]) but not by sociodemographics, cancer history, or distress level. Almost one-third of the participants reported logistical difficulties in implementing surveillance because of the high frequency of medical visits, scheduling difficulties, and the travel distance to their surveillance providers. Self-reported distress and perceived emotional burden for family members and partners were moderate (median for self-reported distress, 3.3; median for perceived emotional burden, 3.0). For both, the interquartile range was moderate to very high (2.7-3.7 and 3.0-3.7, respectively). Conclusions Individuals with LFS require efficient counseling as well as an accessible, well-organized, interdisciplinary, standardized surveillance program to increase adherence and psychological coping.
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | LI-FRAUMENI SYNDROME; MUTATION CARRIERS; RISK; BREAST; CHILDHOOD; WOMEN; MORBIDITY; ADHERENCE; SARCOMA; BURDEN; adherence; hereditary breast cancer; Li-Fraumeni syndrome; pathogenicTP53germline variant; surveillance |
| Subjects: | 600 Technology > 610 Medical sciences Medicine |
| Divisions: | Medicine > Lehrstuhl für Frauenheilkunde und Geburtshilfe (Schwerpunkt Geburtshilfe) |
| Depositing User: | Dr. Gernot Deinzer |
| Date Deposited: | 22 Mar 2021 07:30 |
| Last Modified: | 22 Mar 2021 07:30 |
| URI: | https://pred.uni-regensburg.de/id/eprint/44376 |
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