Prenatal Diagnostic Decision-making in Adolescents

Plaga, Stacey; Demarco, Kristin; Shulman, L.P.

doi:10.1016/j.jpag.2005.01.003

Cited by 4 publications

(6 citation statements)

References 13 publications

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“…Respondents also noted that the most common reasons adolescents were referred to genetic counseling were abnormal ultrasound findings and a family history of a genetic condition, although the prevalence of these reasons was not statistically different than indications for adult patients. These findings are consistent with prior research demonstrating that adolescents who are pregnant typically are referred for indications such as positive results for maternal serum screening, ultrasound abnormalities, and family history of genetic abnormalities (Plaga et al 2005). These findings may be due to the late presentation of adolescent patients who may not be eligible for early screening or diagnostic testing.…”

Section: Patient Populationsupporting

confidence: 89%

“…It would be interesting to further evaluate how genetic counseling is perceived from the point of view of the adolescent patient. Some published studies have begun to examine the type of information adolescents who have a genetic condition are interested in learning, and some assess adolescents' opinions pertaining to pregnancy related topics (e.g., Decruyenaere et al 1995;Plaga et al 2005). Therefore, it may be beneficial if future studies could assess adolescents' opinions directly through techniques such as focus groups, one-on-one interviews, and/or surveys.…”

Section: Future Directionsmentioning

confidence: 99%

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Genetic Counselors’ Experiences with Adolescent Patients in Prenatal Genetic Counseling

Griswold¹,

Ashley

Dixon

et al. 2010

Journal of Genetic Counseling

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Adolescents comprise a portion of women who present to genetic counselors prenatally. In this study, prenatal genetic counselors (N=128) were surveyed regarding their perceptions of genetic counseling sessions for adolescent (ages 13-19) and adult (ages 20-34) patients. Counselors perceived differences in methods used to communicate risk information for adolescent versus adult populations. Respondents reported that it is more difficult for adolescents to understand prognostic information than adults. They also noted differences between adult and adolescent populations with respect to the people who typically accompany the patient to the session. Respondents stated that adolescents were accompanied by a parent, friend, or sibling, which differed from adults who reportedly were accompanied by a significant other, father of the pregnancy, or by no one. These findings suggest it is important to recognize that adolescent patients are in a unique stage of their development which may influence a prenatal genetic counseling session.

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Section: Patient Populationsupporting

confidence: 89%

Section: Future Directionsmentioning

confidence: 99%

Genetic Counselors’ Experiences with Adolescent Patients in Prenatal Genetic Counseling

Griswold¹,

Ashley

Dixon

et al. 2010

Journal of Genetic Counseling

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“…A total of 45 studies met the inclusion criteria (Figure 1). A range of study designs were used, most of which were quantitative in nature (21 of 45 [47%]).…”

Section: Resultsmentioning

confidence: 99%

“…A range of study designs were used, most of which were quantitative in nature (21 of 45 [47%]). Of the 21 articles, 14 had a cross-sectional questionnaire design with a mix of original open- and closed-ended items and validated instruments, 5 were longitudinal studies, and 2 had a case-control design . Qualitative design was used in 12 additional studies (27%), and all 12 involved one-on-one interactions with participants; 8 of them also included semistructured interviews .…”

Section: Resultsmentioning

confidence: 99%

“…Of the 7 studies that were identified in this subcategory, 2 found that disclosure of parental genetic test results to at-risk children was limited because of the perceived adverse implications for their behavior and welfare . The first article discussed the limited communication with daughters regarding maternal breast cancer; consequently, daughters had little awareness of the heritable risk and testing availability .…”

Section: Resultsmentioning

confidence: 99%

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Experiences With Genetic Counseling, Testing, and Diagnosis Among Adolescents With a Genetic Condition

et al. 2022

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H owpeopleinterpretandrespondtoadiagnosisaftergenetic testing is key to tailoring genetic counseling to optimize patient outcomes. The increasing application of genome sequencing (GS) has been associated with the diagnosis of a genetic condition in a growing number of individuals, including adolescents. 1 Genetic counseling is recommended for those who are considering undergoing GS. 2 Genetic counseling is defined as "the process of helping people understand and adapt to the medical, psychological, and familial implications of the genetic contributions to disease. The process integrates: interpretation of family and medical histories to assess the chance of disease occurrence or recurrence; education about inheritance,testing,management,prevention,resourcesandresearch;coun-seling to promote informed choices and adaptation to the risk or condition. "3(p77) Children and adolescents warrant special consideration regarding genetic testing to ensure that informed consent is obtained and the necessary subjective, surrogate decision-makers are involved. 4 Little is known about the needs of adolescents with a genetic condition with regard to their experience of clinical genetic services, including genetic counseling and GS. Adolescence is a critical period, during which the task of identity development (ie, establishing selfknowledge and independence, and acquiring a sense of belonging 5 ) occurs. 6 Aspects of gender, religion, ethnicity, nationality, culture, and class coalesce to inform a person's sense of social identity. 7 The IMPORTANCE The number of adolescents who are diagnosed with a genetic disorder is increasing as genome sequencing becomes the standard of clinical diagnostic testing. However, the experience of receiving a diagnosis of a genetic condition has not been extensively studied in adolescents.OBJECTIVE To identify how adolescents with a genetic condition engage with genetic or genomic counseling services as well as interpret, adapt to, and experience their diagnosis.EVIDENCE REVIEW A literature search of MEDLINE, Embase, CINAHL, and PsycINFO was undertaken. Articles (primary literature, knowledge syntheses, and gray literature) in English that investigated the experiences of adolescents between 10 and 19 years of age who received genetic or genomic counseling were included. Data were extracted from 45 eligible articles and analyzed descriptively. FINDINGS A total of 45 studies were included, most of which were quantitative in nature (21 of 45 [47%]) and conducted in the US (n = 13), followed by the UK (n = 8), Australia (n = 8), and Canada (n = 6). A total of 29 distinct monogenic disorders were investigated. Sample sizes ranged from 1 to 930, with a median of 23 participants, and the year of publication ranged from 1977 to 2019. Included studies addressed all aspects of genetic counseling, but a preponderance of articles assessed knowledge about genetic conditions (n = 17) and challenges of communication within families (n = 16). Fewer articles addressed the experiences of adolescents adapting to t...

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Developmentally Based Approaches for Counseling Children and Adolescents

Austin¹,

Schoch²

2020

Genetic Counseling Practice

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Prenatal Diagnostic Decision-making in Adolescents

Cited by 4 publications

References 13 publications

Genetic Counselors’ Experiences with Adolescent Patients in Prenatal Genetic Counseling

Genetic Counselors’ Experiences with Adolescent Patients in Prenatal Genetic Counseling

Experiences With Genetic Counseling, Testing, and Diagnosis Among Adolescents With a Genetic Condition

Developmentally Based Approaches for Counseling Children and Adolescents

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