Rippinger, Nathalie, Fischer, Christine, Haun, Markus W. ORCID: 0000-0003-1851-3747, Rhiem, Kerstin, Grill, Sabine, Kiechle, Marion, Cremer, Friedrich W., Kast, Karin, Nguyen, Huu P., Ditsch, Nina, Kratz, Christian P., Vogel, Julia, Speiser, Dorothee, Hettmer, Simone, Glimm, Hanno, Froehling, Stefan, Jaeger, Dirk, Seitz, Stephan, Hahne, Andrea, Maatouk, Imad, Sutter, Christian, Schmutzler, Rita K., Dikow, Nicola and Schott, Sarah (2020). Cancer surveillance and distress among adult pathogenicTP53germline variant carriers in Germany: A multicenter feasibility and acceptance survey. Cancer, 126 (17). S. 4032 - 4042. HOBOKEN: WILEY. ISSN 1097-0142

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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: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Rippinger, NathalieUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Fischer, ChristineUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Haun, Markus W.UNSPECIFIEDorcid.org/0000-0003-1851-3747UNSPECIFIED
Rhiem, KerstinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Grill, SabineUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kiechle, MarionUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cremer, Friedrich W.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kast, KarinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Nguyen, Huu P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ditsch, NinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kratz, Christian P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vogel, JuliaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Speiser, DorotheeUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hettmer, SimoneUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Glimm, HannoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Froehling, StefanUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jaeger, DirkUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Seitz, StephanUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hahne, AndreaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Maatouk, ImadUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sutter, ChristianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schmutzler, Rita K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Dikow, NicolaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schott, SarahUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-329665
DOI: 10.1002/cncr.33004
Journal or Publication Title: Cancer
Volume: 126
Number: 17
Page Range: S. 4032 - 4042
Date: 2020
Publisher: WILEY
Place of Publication: HOBOKEN
ISSN: 1097-0142
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
LI-FRAUMENI SYNDROME; TP53 MUTATION CARRIERS; RISK; BREAST; CHILDHOOD; WOMEN; MORBIDITY; ADHERENCE; SARCOMA; BURDENMultiple languages
OncologyMultiple languages
URI: http://kups.ub.uni-koeln.de/id/eprint/32966

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