Randomized trial of a decision aid for individuals considering genetic testing for hereditary nonpolyposis colorectal cancer risk

Abstract

BACKGROUND.Despite the potential benefits of genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) risk, individuals can find the genetic testing decision‐making process complicated and challenging. The goal of the current study was to measure the effectiveness of a tailored decision aid designed specifically to assist individuals to make informed decisions regarding genetic testing for HNPCC risk.METHODS.In all, 153 individuals were randomized to receive the decision aid or a control pamphlet at the end of their first genetic counseling consultation. Of these, 109 (71.2%) completed the first questionnaire 1 week after consultation, whereas 95 (62.1%) completed the 6‐month follow‐up questionnaire.RESULTS.Although the decision aid had no significant effect on postdecisional regret or actual genetic testing decision, the trial results demonstrated that participants who received the decision aid had significantly lower levels of decisional conflict (ie, uncertainty) regarding genetic testing (chi‐square(1) = 8.97; P = .003) and were more likely to be classified as having made an informed choice concerning genetic testing (chi‐square(1) = 4.37; P = .037) than participants who received a control pamphlet. Also, men who received the decision aid had significantly higher knowledge levels regarding genetic testing compared with men who received the control pamphlet, whereas no such differences were found for women (chi‐square(2) = 6.76; P = .034).CONCLUSIONS.A decision aid for individuals considering genetic testing for HNPCC is an effective intervention to reduce uncertainty and assist individuals to make an informed choice regarding genetic testing for HNPCC after genetic counseling. Cancer 2008. © 2008 American Cancer Society.

Measuring patient-centered care: An updated systematic review of how studies define and report concordance between patients’ preferences and medical treatments

“…Of the studies where it was not clearly reported, several only reported a composite measure of ''informed choice,'' but did not present the data on value concordance separately [22,48,53,68,[73][74][75]. The significance of the value concordance was reported in the majority (58/72) of the calculations.…”

“…Twenty-six of the 61 studies involved a patient decision aid [16,18,20,22,25,32,33,[47][48][49][50][51][52][53]56,[58][59][60][61]64,66,68,[72][73][74][75]. Four additional studies reported using education materials such as educational sessions or pamphlets but did not refer to them as decision aids [17,43,63,70].…”

“…assessing whether patients feel informed. Twelve studies reported an association between the value concordance and knowledge; specifically, they reported the percentage of patients who made an informed and value concordant choice [22,48,49,53,60,[64][65][66]68,[73][74][75].…”

“…Thirty of the 61 studies reported assessment of the subjects' knowledge surrounding the decision [16,18,20,22,25,32,33,44,[47][48][49]51,53,[56][57][58][59][60][61][64][65][66]68,[71][72][73][74][75]77,78]. The majority of these studies (n = 27) used decision-specific items, while three [71,77,78] used generic measurements, e.g.…”

Psychological Impact and Associated Factors After Disclosure of Genetic Test Results Concerning Hereditary Nonpolyposis Colorectal Cancer

“…The authors also found that some affected individuals may not fully comprehend the meaning of their potential test results. Wakefield et al (2008) conducted a randomized trial to measure the effectiveness of a tailored decision aid designed specifically to assist individuals to make informed decisions regarding genetic testing for HNPCC. The decision aid explains the evidence available regarding HNPCC-related cancer risks, the differences between a mutation search and predictive testing, and the potential benefits, risks, and limitations of testing (Wakefield et al, 2007b).…”