Can we test for hereditary cancer at 18 years when we start surveillance at 25? Patient reported outcomes.

Overview of attention for article published in Familial Cancer, April 2013
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  • In the top 5% of all research outputs scored by Altmetric
  • One of the highest-scoring outputs from this source (#1 of 227)
  • High Attention Score compared to outputs of the same age (94th percentile)
  • High Attention Score compared to outputs of the same age and source (95th percentile)

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27 tweeters

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12 Mendeley
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Title
Can we test for hereditary cancer at 18 years when we start surveillance at 25? Patient reported outcomes.
Published in
Familial Cancer, April 2013
DOI 10.1007/s10689-013-9644-9
Pubmed ID
Authors

Sie AS, Prins JB, Spruijt L, Kets CM, Hoogerbrugge N

Abstract

DNA-testing for BRCA1/2 or Lynch syndrome is possible from the age of 18 years, although surveillance usually starts at 25. Some patients regret their decision of testing before age 25. This retrospective study evaluates whether the testing age should be above 25 years to prevent adverse effects such as regret or decisional conflict, by determining the percentage and characteristics of patients reporting these problems. 111 of 219 patients (51%) tested for BRCA1/2 mutations or Lynch syndrome between 18 and 25 years from July 1996 to February 2011, returned self-report surveys. Primary measures were regret, decisional conflict and family influence. Secondary measures included quality of life (QoL), coping style, impact of genetic testing, and risk perception. Median age was 27 [21-40] years, with 86% female. 73% was tested for BRCA1/2, 27% for Lynch syndrome. Only 3% reported regret, however 39% had moderate (32%) to severe (7%) decisional conflict. Regression analysis revealed that decisional conflict was associated with more monitoring/neutral coping style (p < 0.03) or paternal/no family mutation (p < 0.02); there were no differences in QoL, impact or risk perception. 42% were mutation carriers, showing equal decisional conflict to non-carriers. 68% would recommend testing <25 years; 77% desired surveillance <25 years if a mutation carrier. Almost no patient tested for hereditary cancer between 18 and 25 years regretted this decision. A third reported retrospective decisional conflict, especially those actively seeking information when faced with a threat and/or those with a paternal or unknown inheritance. These patients may benefit from decisional support and personalized information.

Twitter Demographics

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Mendeley readers

The data shown below were compiled from readership statistics for 12 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 12 100%

Demographic breakdown

Readers by professional status Count As %
Student > Ph. D. Student 5 42%
Student > Master 2 17%
Researcher 2 17%
Other 1 8%
Student > Postgraduate 1 8%
Other 1 8%
Readers by discipline Count As %
Medicine and Dentistry 6 50%
Psychology 4 33%
Social Sciences 2 17%

Attention Score in Context

This research output has an Altmetric Attention Score of 22. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score was calculated when the research output was last mentioned on 01 September 2013.
All research outputs
#214,877
of 5,036,908 outputs
Outputs from Familial Cancer
#1
of 227 outputs
Outputs of similar age
#5,310
of 92,815 outputs
Outputs of similar age from Familial Cancer
#1
of 22 outputs
Altmetric has tracked 5,036,908 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 95th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 227 research outputs from this source. They receive a mean Attention Score of 2.8. This one has done particularly well, scoring higher than 99% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 92,815 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 94% of its contemporaries.
We're also able to compare this research output to 22 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 95% of its contemporaries.