abstract
June 10, 2016
PURPOSE:
Advances
in genetics and increased public awareness increased the demand for
interdisciplinary genetic outpatient consultation (IOGC). Communicating
cancer risk is complex, and ideally information transfer should be
individualized. Although psychological experiences with genetic testing
have been studied in detail, studies on long-term experiences with IOGC
and information transfer are lacking. We assessed patients'
understanding and satisfaction with IOGC in families at risk of
hereditary breast and ovarian cancer (HBOC) with the aim of informing
best clinical practice, improving compliance and informed
decision-making.
(DKTK, German Cancer Research Center)
METHODS:
Female
counselees referred for IOGC between July 1, 2009 and July 1, 2011 were
eligible. Data were collected using a 47-item postal questionnaire to
assess sociodemographic, psychological, behavioral parameters. Overall
satisfaction and personal usefulness of IOGC were assessed with a
five-point, and risk perception with a visual analog scale. Data were
analyzed using Spearman rank, Wilcoxon U or Chi-squared test.
RESULTS:
612
(72 %) of 849 women participated reported being highly satisfied (75 %,
n = 430) and declared personal usefulness (73 %, n = 421) on average
3.5 years after IOGC. Women deemed "high risk" assessed their risk of
developing BC as significantly higher than non-high-risk counselees (3.2
versus 3.0, p = 0.00484). Risk perception was lower in BRCA1/2 mutation
carriers than in women with unclassified variants or no mutation (2.8
versus 3.5 and 3.1, respectively).
CONCLUSION:
Women
with an HBOC background have additional needs to achieve long-term
satisfaction after IOGC. Prospective studies are required to optimize
care for the increasing number of people who seek genetic consultation,
particularly as the complexity of genetics knowledge increases.
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