Integrating genetic counseling and testing in the pediatric oncology setting: Parental attitudes and influencing factors

Desrosiers, Lauren; Quinn, Emily A.; Cramer, Stewart F.; Dobek, Whitney

doi:10.1002/pbc.27907

Cited by 14 publications

(10 citation statements)

References 21 publications

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“…The group surveyed parents of children recently diagnosed with cancer and found that 64.3% (27/42) were familiar with genetic counseling and that 50% (21/42) were interested in pursuing genetic counseling/testing but referral was not offered to 59.5% (25/42). 63 Interest in genetic testing was not dependent on personal or family history of cancer or features suggestive of a CPS as described by Jongmans et al 11 Thus, the authors suggest that it is reasonable to consider referral to genetics for evaluation of a CPS despite family history in a pediatric oncology setting. 63 Together, these data suggest genetics specialists are being underutilized whether due to the urgency of cancer treatment planning and disease management, or lack of genetics knowledge in the referring physician.…”

Section: Family History Informationmentioning

confidence: 95%

Evaluation of barriers to referral for cancer predisposition syndromes in pediatric oncology patients

Venier¹,

Grubs²,

Kessler³

et al. 2021

Molecular Genetics and Metabolism

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Genomic medicine and the use of genetic information in pediatric oncology has provided insight on the molecular underpinnings of childhood cancers and has demonstrated that cancer predisposition syndromes (CPS) are underdiagnosed. Diagnosis of a CPS has important implications for the patient and their family. In childhood, CPS are often diagnosed by geneticists or oncologists with expertise in CPS following a malignancy, however, this requires a member of the care team, most commonly, the treating oncologist to suspect a CPS and refer them for assessment. We sought to understand current referral practices of pediatric oncology healthcare providers and barriers to referral for evaluation of a CPS. An online survey was sent to members of the Children's Oncology Group. Of the 189 respondents, 80.4% were pediatric hematologists/oncologists and most (69%) used formal guidelines to aid in referral assessment.Guideline use was associated with a higher proportion (>5%) of patients with a CPS in the respondent's practice. Participants were more likely to refer patients with malignancy and additional features of a CPS than for a specific type of cancer, despite the use of guidelines. Most respondents indicated they would rarely refer patients with tumors highly associated with CPS.Patient/parent knowledge of family history was considered the most challenging barrier to obtaining a family history, though a thorough three-generation pedigree was not consistently attempted. Overall, participants indicated the most significant barrier to referral was priority given the patient's more immediate care needs. Other barriers to genetics referral identified elsewhere

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Section: Family History Informationmentioning

confidence: 95%

Evaluation of barriers to referral for cancer predisposition syndromes in pediatric oncology patients

Venier¹,

Grubs²,

Kessler³

et al. 2021

Molecular Genetics and Metabolism

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“…42 A further challenge is navigating client fears regarding genetic counselling sessions. 23,152 In Saudi Arabia, "'counselling" is not a term in general use and patients have no prior understanding of the process. When creating appointments, patients are asked an extensive panel of questions regarding their family history of cancer, which can cause distress.…”

Section: Familial Cancer Genetic Counselling Clinic In Saudi Arabiamentioning

confidence: 99%

“…50 The decision to select the correct genetic test and how the data are interpreted and communicated the patient remain ongoing issues in these areas. 22,23,41,42 An additional challenge is determining the goals of testing and the information required. Furthermore, genetic counsellors must successfully communicate risk perception to their patients.…”

Section: Familial Cancer Genetic Counselling Clinic In Saudi Arabiamentioning

confidence: 99%

“…20,21 Accordingly, increased public awareness that cancer can be heritable, and that the heritable risk can be evaluated has increased as has the demand for genetic counselling and screening. 14,[22][23][24] The incidence and prevalence of hereditary cancer amongst different ethnic populations is often distinct. Cancer is a major problem in the Arab world 4,[25][26][27][28][29][30][31] which is delimited by Lebanon and Syria to the north, Morocco to the west, south to Yemen, and Iraq in the east, accounting for >300 million people.…”

Section: Introductionmentioning

confidence: 99%

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Familial/inherited cancer syndrome: a focus on the highly consanguineous Arab population

et al. 2020

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The study of hereditary cancer, which accounts for~10% of cancer cases worldwide is an important subfield of oncology. Our understanding of hereditary cancers has greatly advanced with recent advances in sequencing technology, but as with any genetic trait, gene frequencies of cancer-associated mutations vary across populations, and most studies that have located hereditary cancer genes have been conducted on European or Asian populations. There is an urgent need to trace hereditary cancer genes across the Arab world. Hereditary disease is particularly prevalent among members of consanguineous populations, and consanguineous marriages are particularly common in the Arab world. There are also cultural and educational idiosyncrasies that differentiate Arab populations from other more thoroughly studied groups with respect to cancer awareness and treatment. Therefore, a review of the literature on hereditary cancers in this understudied population was undertaken. We report that BRCA mutations are not as prevalent among Arab breast cancer patients as they are among other ethnic groups, and therefore, other genes may play a more important role. A wide variety of germline inherited mutations that are associated with cancer are discussed, with particular attention to breast, ovarian, colorectal, prostate, and brain cancers. Finally, we describe the state of the profession of familial cancer genetic counselling in the Arab world, and the clinics and societies dedicated to its advances. We describe the complexities of genetic counselling that are specific to the Arab world. Understanding hereditary cancer is heavily dependent on understanding population-specific variations in cancer-associated gene frequencies.

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“…In addition, genetic concepts remained unfamiliar to one-third of parents. Another survey of parents of children with cancer found that most parents reported interest in cancer genetic counseling and testing, but the majority were not offered cancer genetic counseling (Desrosiers et al, 2019). Finally, semi-structured interviews with parents and adolescents found that although families were satisfied with cancer genetic counseling, reported acceptance of genetic testing, and understood the benefit of testing their child, the sessions produced complex emotional reactions and families indicated that they struggled with retaining genetic information during this 'emotionally taxing' time (McGill et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Cancer genetic counseling for childhood cancer predisposition is associated with improved levels of knowledge and high satisfaction in parents

Juarez

Pencheva

Bellcross

et al. 2020

Journal of Genetic Counseling

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Previous surveys of adults with cancer have revealed increased levels of genetic knowledge, varying levels of worry, and high satisfaction with cancer genetic counseling. We sought to determine the impact of cancer genetic counseling on parental levels of genetic knowledge, worry about cancer, and satisfaction in the context of suspected cancer predisposition in a child. We hypothesized that parents would be satisfied with cancer genetic counseling and that cancer genetic counseling would improve baseline parental genetic knowledge and decrease levels of worry. Parents were recruited from a pediatric cancer predisposition clinic in the United States. A survey was administered to two cohorts: One cohort had received cancer genetic counseling in the past and only completed one survey (post-only, n = 26), and another cohort completed the survey before and after cancer genetic counseling (pre/post, n = 23). The survey included questions on demographics, knowledge of genetics, worry levels, and satisfaction with the cancer genetic counseling service. The postgenetic counseling survey also contained a free-text section for parents to indicate what they took away from the sessions. Parental levels of genetics knowledge increased by an average of 1.9 points (p = .01), with 65.2% of parents demonstrating an increase in genetics knowledge score. Average worry levels did not change significantly (p = .37), with 52.2% of parents indicating decreased worry, and 34.8% indicating increased worry. Overall, 91.8% of parents reported high levels of satisfaction.Our results show that cancer genetic counseling in a pediatric cancer predisposition clinic improves parental levels of genetics knowledge. Satisfaction rates suggest that parents find this service beneficial. These results demonstrate the positive impacts of cancer genetic counseling on parents of children in which a hereditary cancer syndrome is known or suspected.

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Integrating genetic counseling and testing in the pediatric oncology setting: Parental attitudes and influencing factors

Cited by 14 publications

References 21 publications

Evaluation of barriers to referral for cancer predisposition syndromes in pediatric oncology patients

Evaluation of barriers to referral for cancer predisposition syndromes in pediatric oncology patients

Familial/inherited cancer syndrome: a focus on the highly consanguineous Arab population

Cancer genetic counseling for childhood cancer predisposition is associated with improved levels of knowledge and high satisfaction in parents

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