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Family communication and patient distress after germline genetic testing in individuals with pancreatic ductal adenocarcinoma
Author(s) -
Peters Mary Linton B.,
Stobie Lindsey,
Dudley Beth,
Karloski Eve,
Allen Kyle,
Speare Virginia,
Dolinsky Jill S.,
Tian Yuan,
DeLeonardis Kim,
Krejdovsky Jill,
Button Arlene,
Lim Cynthia,
Borazanci Erkut,
Brand Randall,
Tung Nadine
Publication year - 2019
Publication title -
cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 3.052
H-Index - 304
eISSN - 1097-0142
pISSN - 0008-543X
DOI - 10.1002/cncr.32077
Subject(s) - medicine , pancreatic ductal adenocarcinoma , distress , genetic testing , germline , genetic counseling , adenocarcinoma , oncology , pancreatic cancer , cancer , clinical psychology , genetics , biology , gene
Background Germline genetic testing currently is recommended for patients with pancreatic ductal adenocarcinoma (PDAC). In the current study, the authors assessed how often results are communicated to first‐degree relatives within 3 months and the emotional impact of testing on patients. Methods A total of 148 patients who were newly diagnosed with PDAC and who had undergone testing of 32 cancer susceptibility genes at 3 academic centers were selected; 71% participated. Subjects completed the Multidimensional Impact of Cancer Risk Assessment (MICRA) and a family communication survey. The results of both surveys were assessed at 3 months according to the genetic test result (positive, negative, or variant of unknown significance [VUS]) and whether a patient met criteria for genetic testing. Results A total of 99 patients completed the MICRA survey and 104 completed the family communication survey. The average age of the patients was 67 years, 47% were female, 29% had stage III/IV (AJCC 8th edition) disease, and 42% met genetic testing criteria. Approximately 80% of patients told at least 1 first‐degree relative about their result. There was a trend toward greater disclosure among patients who tested positive (93% vs 77% for those with a VUS result [ P = .149] and 74% for those who tested negative [ P = .069]). Patients not meeting genetic testing criteria were less likely to disclose results (69% vs 93%; P = .003). MICRA scores did not differ by test result, age, stage of disease, or sex. Conclusions The rate of result communication was high, although it was lower among patients who did not meet genetic testing criteria, those who tested negative, or those who had a VUS result. Testing‐associated distress was similar across patient groups, and was comparable to that reported by other patients with cancer. Improved communication for all patients is crucial given the prognosis of PDAC, which limits time for disclosure.