Genetic testing for cancer in children: short-term psychological effect

Codori, Ann Marie; Petersen, Gloria M.; Boyd, Patti; Brandt, Jason; Giardiello, F. M.

doi:10.1016/0378-3782(97)90056-6

Cited by 39 publications

(94 citation statements)

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“…Five studies reported no change in children's mean anxiety scores after testing, between children testing positive or negative for a genetic mutation, or between children who were found to be mutation carriers or to have an unknown mutation status compared with a control (noncarrier children). 28,[34][35][36][37] Two studies assessing psychological distress (anxiety and depression combined) reported scores that matched the child's baseline scores and remained in the normal range after testing for FAP 28 and hypertrophic cardiomyopathy risk. 36 Five studies, however, found nonsignificant increases in children's depressive symptoms after genetic testing for FAP 28,34,35 or hereditary cardiac disease risk.…”

Section: What Is the Psychological Impact Of Personal Genetic Testingmentioning

confidence: 99%

“…28,[34][35][36][37] Two studies assessing psychological distress (anxiety and depression combined) reported scores that matched the child's baseline scores and remained in the normal range after testing for FAP 28 and hypertrophic cardiomyopathy risk. 36 Five studies, however, found nonsignificant increases in children's depressive symptoms after genetic testing for FAP 28,34,35 or hereditary cardiac disease risk. 36,38 When exploring outcomes for particular subgroups, there was some evidence to suggest that children with affected parents and those with positive results may be more at risk.…”

Section: What Is the Psychological Impact Of Personal Genetic Testingmentioning

confidence: 99%

“…One study reported that children with a mother with breast cancer were at increased risk for anxiety and depression. 35 Regarding FAP, both Codori and colleagues 35 and Gjone and colleagues 39 reported that children had less favorable outcomes if a parent was affected by FAP, whereas Michie and colleagues reported that 10% of children testing positive reported regretting being tested. 28 Gjone and colleagues also reported that 36% of children (8/22 children) tested for FAP fulfilled the criteria for a psychiatric diagnosis following testing.…”

Section: What Is the Psychological Impact Of Personal Genetic Testingmentioning

confidence: 99%

“…28 Three studies assessing behavioral problems in children tested for FAP risk also reported scores matching that of baseline data or controls. 28,34,35 …”

Section: Quality Of Life and Behaviormentioning

confidence: 99%

“…36 Few met full "psychiatric diagnosis" and no differences in problem scores 39 Reduced uncertainty learning of test result, 3,16 relief from fear if negative, 3 or knowing treatment available if positive 44 Few worried about worse health 41 or developing the disease they were genetically predisposed to. 42 Some hoped/expected medication to help 41 Promotes psychological adjustment 17,46 and child autonomy 17,46 No behavioral problems at follow-up, 25,35 regardless of test results, 28 and decreased in some at follow-up. 35 "Good" social acceptance and bullying (P < 0.001) 38 Reduction in worry/uncertainty about future life planning (education, employment, social, and economic plans) and health planning (early or presymptomatic intervention) 3,16,17,29,43,44,46,47 Majority only thought/worried about becoming sick a 'little bit' or less.…”

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

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The psychological impact of genetic information on children: a systematic review

Wakefield

Hanlon

Tucker

et al. 2016

Genetics in Medicine

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Purpose: This review assessed the psychological impact that acquiring personal and familial genetic information has on children. We also examined the concordance between the available empirical data and clinical guidance/perspectives articles. Methods:We screened 591 abstracts and identified 13 studies, representing 966 children. Ten studies assessed 386 children tested for familial adenomatous polyposis (n = 171), hereditary cardiac disease (n = 134), and other conditions (n = 81). Three studies addressed the impact of BRCA1/2 testing of a family member on 580 children.Results: Serious adverse psychological outcomes were uncommon. Most studies reported no significant increase in mean anxiety, depression, and distress scores (n = 8, 61.5%); however, some children experienced intrafamilial distress, discrimination, and guilt/regret. Some children were more concerned about their own health or their family members' health. There was limited consistency between anticipated adverse impact and empirical data. Conclusions:The review identified little conclusive evidence of deleterious psychological consequences for children acquiring genetic information. However, there is a lack of data regarding genetic testing for conditions that may not be treatable/modifiable, as well as a dearth of longitudinal studies. Therefore, clinical caution remains essential for the ethical integration of genetic testing into pediatrics. Further research assessing the potential positive and negative effects of genetic testing in childhood is warranted.

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Section: What Is the Psychological Impact Of Personal Genetic Testingmentioning

confidence: 99%

Section: What Is the Psychological Impact Of Personal Genetic Testingmentioning

confidence: 99%

Section: What Is the Psychological Impact Of Personal Genetic Testingmentioning

confidence: 99%

“…28 Three studies assessing behavioral problems in children tested for FAP risk also reported scores matching that of baseline data or controls. 28,34,35 …”

Section: Quality Of Life and Behaviormentioning

confidence: 99%

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

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The psychological impact of genetic information on children: a systematic review

Wakefield

Hanlon

Tucker

et al. 2016

Genetics in Medicine

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Parents' responses to disclosure of genetic test results of their children

et al. 2000

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The psychological reactions of 22 parental couples and 3 single parents were investigated after disclosure of genetic test results of their children. The children were tested for the early-onset, monogenetic cancer disorder multiple endocrine neoplasia type 2. Participants came from 13 different families and were aged between 28 and 47 years. Parents who were informed that their child was a gene carrier reacted with resignation, showed moderate to high levels of test-related and general anxiety, but few psychological complaints. Daily activities were disturbed in 43% of the parents with carrier-children. There was little disruption of the parents' future perspective, apart from some socioeconomic disadvantages and increased parental concern for the carrier-children. Most parents with carrier-children showed restraint with respect to short-term prophylactic treatment. Parents with favorable test results showed significantly less anxiety and no disturbance in their daily activities. They did not, however, seem to be reassured by the DNA test result. These parents questioned the reliability of the DNA test, wanted confirmation of the test results, and were eager to continue screening of their noncarrier children. Parents, especially those with a lower level of education and/or a pessimistic view of the future, were distressed by unfavorable test results. Additional counseling is advised to prevent parents of carrier-children worrying unnecessarily, or parents with children in whom the disease gene was not found being not reassured. Am. J. Med. Genet. 94:316-323, 2000.

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Genetic testing for hereditary colorectal cancer in children: Long‐term psychological effects

Codori

Zawacki

Petersen

et al. 2002

American J of Med Genetics Pt A

100

106

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Children who carry a gene mutation for familial adenomatous polyposis are virtually certain to develop colorectal cancer without annual endoscopic screening and a colectomy when polyps appear. Predictive genetic testing can identify children who need regular surveillance. While the medical benefits of genetic testing are clear, the psychological effects have not been well studied. We evaluated the long-term psychological effects of genetic testing in 48 children and their parents. In each family, one parent was a known APC gene mutation carrier. Before genetic testing, and three times afterward, participants completed measures of psychological functioning, which, for children, included depression and anxiety symptoms, and behavior problems and competencies. Parents completed a measure of depression symptoms. Data were collected at 3-, 12-, and 23-55 months after disclosure. Twenty-two children tested positive; 26 children tested negative. Mean length of follow-up was 38 months. There were no clinically significant changes in mean psychological test scores in children or parents, regardless of the children's test results or the sex of the affected parent. However, the group of children who tested positive and had a mutation-positive sibling showed significant, but subclinical, increases in depression symptoms. Furthermore, several individual mutation-negative children with a positive sibling had clinical elevations in anxiety symptoms at one or more follow-up. Behavior problems declined for all groups, and behavior competence scores remained unchanged. We conclude that most children do not suffer clinically significant psychological distress after testing. However, because some children showed clinically significant anxiety symptoms, long-term psychological support should be available to those families with both mutation-positive and mutation-negative children, and with multiple mutation-positive children. Our findings should call for a multidisciplinary approach to genetic testing for children.

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Genetic testing for cancer in children: short-term psychological effect

Cited by 39 publications

References 0 publications

The psychological impact of genetic information on children: a systematic review

The psychological impact of genetic information on children: a systematic review

Parents' responses to disclosure of genetic test results of their children

Genetic testing for hereditary colorectal cancer in children: Long‐term psychological effects

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