105 / 108
P
ediatric
cancer
and
L
i
-F
raumeni
/L
i
-F
raumeni
-
like
syndromes
:
a
review
for
the
pediatrician
R
ev
A
ssoc
M
ed
B
ras
2015; 61(3):282-289
289
41.
Lammens CR, Aaronson NK, Wagner A, Sijmons RH, Ausems MG, Vriends
AH, et al. Genetic testing in Li-Fraumeni syndrome: uptake and psychosocial
consequences. J Clin Oncol. 2010; 28(18):3008-14.
42.
Lammens CR, Bleiker EM, Aaronson NK, Wagner A, Sijmons RH, Ausems
MG, et al. Regular surveillance for Li-Fraumeni syndrome: advice, adherence
and perceived benefits. Fam Cancer. 2010; 9(4):647-54.
43.
McBride KA, Ballinger ML, Killick E, Kirk J, Tattersall MH, Eeles RA, et al.
Li-Fraumeni syndrome: cancer risk assessment and clinical management.
Nat Rev Clin Oncol. 2014; 11(5):260-71.
44.
Dorval M, Patenaude AF, Schneider KA, Kieffer SA, DiGianni L, Kalkbrenner
KJ, et al. Anticipated versus actual emotional reactions to disclosure of
results of genetic tests for cancer susceptibility: findings from p53 and
BRCA1 testing programs. J Clin Oncol. 2000; 18(10):2135-42.
45.
Peshkin BN, DeMarco TA, Garber JE, Valdimarsdottir HB, Patenaude AF,
Schneider KA, et al. Brief assessment of parents attitudes toward testing
minor children for hereditary breast/ovarian cancer genes: development
and validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). J
Pediatr Psychol. 2009; 34(6):627-38.
46.
Palmquist AE, Koehly LM, Peterson SK, Shegog M, Vernon SW, Gritz ER.
“The cancer bond”: exploring the formation of cancer risk perception in
families with Lynch syndrome. J Genet Couns. 2010; 19(5):473-86.
47. Gopie JP, Vasen HF, Tibben A. Surveillance for hereditary cancer: Does the
benefit outweigh the psychological burden?--A systematic review. Crit Rev
Oncol Hematol. 2012; 83(3):329-40.
48.
Peterson SK, Pentz RD, Marani SK, Ward PA, Blanco AM, LaRue D, et al.
Psychological functioning in persons considering genetic counseling and
testing for Li-Fraumeni syndrome. Psychooncology. 2008; 17(8):783-9.
49. BorryP,Evers-KieboomsG,CornelMC,ClarkeA,DieickxK;PublicandProfessional
Policy Committee (PPPC) of the European Society of Human Genetics (ESHG).
Genetic testing in asymptomatic minors: background considerations towards
ESHGRecommendations. Eur J HumGenet. 2009, 17(6):711-9.
50. Koch L, SvendsenMN. Providing solutions-defining problems: the imperative
of disease prevention in genetic counselling. Soc Sci Med. 2005; 60(4):823-32.
51. Goldim, JR. Bioética: origens e complexidade. Rev HCPA. 2006; 26(2)86-92.
52. O’Doherty K. Agency and choice in genetic counseling: acknowledging
patients concerns. J Genet Couns. 2009; 18(5):464-74.
53.
Matsui K, Lie RK, Kita Y, Ueshima H. Ethics of future disclosure of individual
risk information in a genetic cohort study: a survey of donor preferences. J
Epidemiol. 2008; 18(5):217-24.
54.
Kaphingst KA, Janoff JM, Harris LN, Emmons KM. Views of female breast
cancer patients who donated biologic samples regarding storage and use of
samples for genetic research. Clin Genet. 2006; 69(5):393-8.
55.
Kohut K, Manno M, Gallinger S, Esplen MJ. Should healthcare providers
have a duty to warn family members of individuals with an HNPCC-causing
mutation? A survey of patients from the Ontario Familial Colon Cancer
Registry. J Med Genet. 2007; 44(6):404-7.
56. Ormondroyd E, Moynihan C, Watson M, Foster C, Davolls S, Ardern-Jones
A, et al. Disclosure of genetics research results after the death of the patient
participant: a qualitative study of the impact on relatives. J Genet Couns.
2007; 16(4):527-38.
57.
Roshanai AH, Rosenquist R, Lampic C, Nordin K. Does enhanced information
at cancer genetic counseling improve counselees knowledge, risk perception,
satisfaction and negotiation of information to at-risk relatives?--a randomized
study. Acta Oncol. 2009; 48(7):999-1009.