Motivation and family communication in hereditary prostate cancer genetic testing: Survey of patients from a <scp>US</scp> tertiary medical center

Finn, Caitlin M.; McCormick, Shelley R.; Peterson, Danielle; Niendorf, Kristin B.; Rodgers, Linda

doi:10.1002/jgc4.1624

Cited by 4 publications

(2 citation statements)

References 47 publications

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“…From previous studies, we learned that the majority of prostate cancer patients communicate their genetic test result to at least one relative [ 34 , 35 ]. Important reasons for communication are to inform relatives about their risk and if applicable to encourage them to have genetic testing done as well.…”

Section: Introductionmentioning

confidence: 99%

“…Important reasons for communication are to inform relatives about their risk and if applicable to encourage them to have genetic testing done as well. The main reason prostate cancer patients report not informing relatives about their genetic test result is because this result would not change the relatives’ medical care and because of the emotional distance to their relative [ 34 , 35 ]. In both studies, prostate cancer patients often harboured a variant of unknown significance, a PV in an autosomal recessive gene or in a gene that has very little or no consequences for relatives, which is often different from a PV of known significance in a cancer predisposition gene.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Men with metastatic prostate cancer carrying a pathogenic germline variant in breast cancer genes: disclosure of genetic test results to relatives

Vlaming,

Ausems,

Schijven

et al. 2024

Familial Cancer

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Some patients with metastatic prostate cancer carry a pathogenic germline variant (PV) in a gene, that is mainly associated with an increased risk of breast cancer in women. If they test positive for such a PV, prostate cancer patients are encouraged to disclose the genetic test result to relatives who are at risk in case the carrier status changes the relatives’ medical care. Our study aimed to investigate how men who learned they carry a PV in BRCA1, BRCA2, PALB2, CHEK2 or ATM disclosed their carrier status to at-risk relatives and to assess the possible psychological burden for the carrier and their perception of the burden for relatives. In total, 23 men with metastatic prostate cancer carrying a PV completed the IRI questionnaire about family communication; 14 also participated in a semi-structured interview. Patients felt highly confident in discussing the genetic test result with relatives. The diagnosis of prostate cancer was experienced as a burden, whereas being informed about genetic testing results did in most cases not add to this burden. Two patients encountered negative experiences with family communication, as they considered the genetic test result to be more urgent than their relatives. This mixed-methods study shows that metastatic prostate cancer patients with a PV in genes mainly associated with increased risk of breast cancer feel well-equipped to communicate about this predisposition in their families. Carriers felt motivated to disclose their genetic test result to relatives. Most of them indicated that the disclosure was not experienced as a psychological burden.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Men with metastatic prostate cancer carrying a pathogenic germline variant in breast cancer genes: disclosure of genetic test results to relatives

Vlaming,

Ausems,

Schijven

et al. 2024

Familial Cancer

View full text Add to dashboard Cite

show abstract

“Out of the blue”: A qualitative study exploring the experiences of women and next of kin receiving unexpected results from BRA‐STRAP research gene panel testing

Morrow,

Speechly,

Young

et al. 2023

Journal of Genetic Counseling

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In the genomic era, the availability of gene panel and whole genome/exome sequencing is rapidly increasing. Opportunities for providing former patients with new genetic information are also increasing over time and recontacting former patients with new information is likely to become more common. Breast cancer Refined Analysis of Sequence Tests—Risk And Penetrance (BRA‐STRAP) is an Australian study of individuals who had previously undertaken BRCA1 and BRCA2 genetic testing, with no pathogenic variants detected. Using a waiver of consent, stored DNA samples were retested using a breast/ovarian cancer gene panel and clinically significant results returned to the patient (or next of kin, if deceased). This qualitative study aimed to explore patient experiences, opinions, and expectations of recontacting in the Australian hereditary cancer setting. Participants were familial cancer clinic patients (or next of kin) who were notified of a new pathogenic variant identified via BRA‐STRAP. In‐depth, semi‐structured interviews were conducted approximately 6 weeks post‐result. Interviews were transcribed verbatim and analyzed using an inductive thematic approach. Thirty participants (all female; average age = 57; range 36–84) were interviewed. Twenty‐five were probands, and five were next of kin. Most women reported initial shock upon being recontacted with unexpected news, after having obtained a sense of closure related to their initial genetic testing experiences and cancer diagnosis. For most, this initial distress was short‐lived, followed by a process of readjustment, meaning‐making and adaptation that was facilitated by perceived clinical and personal utility of the information. Women were overall satisfied with the waiver of consent approach and recontacting process. Results are in line with previous studies suggesting that patients have positive attitudes about recontacting. Women in this study valued new genetic information gained from retesting and were satisfied with the BRA‐STRAP recontact model. Practice implications to facilitate readjustment and promote psychosocial adaptation were identified.

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A qualitative study of the experiences of patients with prostate cancer when receiving negative genetic results: “I still don't have a grasp of what it all means”

Zayhowski,

Wang,

Nahorniak

et al. 2024

Journal of Genetic Counseling

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Germline genetic testing has been increasingly conducted for treatment implications in patients with prostate cancer due to the expansion of testing eligibility. Understanding patients' comprehension of genetic results is crucial for establishing effective result disclosure practices. This importance has grown due to the increasing prevalence of negative genetic results being conveyed via electronic communication and by providers without a genetics specialization. This study explores patients with prostate cancer's perceptions of genetic results communication. We analyzed 24 qualitative, semi‐structured interviews with patients with prostate cancer at an urban safety‐net hospital who had genetic results documented in their medical records. Interview questions focused on patient experiences with genetic referrals, genetic counseling, and genetic result disclosure. Audio recordings were professionally transcribed and analyzed by the study team utilizing an inductive thematic approach to generate themes from recurring codes. Of those who participated, 18 were interviewed in English, 5 in Spanish, and 1 in Haitian Creole. No participants reported having a pathogenic variant identified with genetic testing. Study participants identified a number of gaps in results communication which led to misconceptions regarding hereditary cancer risk. Three themes were generated: (1) Patients desired clear communication about the next steps after genetic testing, (2) Patients commonly experienced cognitive dissonance with negative genetic results given personal and family history of cancer, and (3) Patients felt reassurance from negative genetic results. This research suggests that maintaining conversations between patients and healthcare providers alongside the delivery of negative results assists in patient comprehension. Additionally, it is essential to evaluate the accessibility and appropriateness of notes and results sent to patients. Ultimately, understanding communication barriers in genetic results return is imperative in order to provide high‐quality genetic care.

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Motivation and family communication in hereditary prostate cancer genetic testing: Survey of patients from a US tertiary medical center

Cited by 4 publications

References 47 publications

Men with metastatic prostate cancer carrying a pathogenic germline variant in breast cancer genes: disclosure of genetic test results to relatives

Men with metastatic prostate cancer carrying a pathogenic germline variant in breast cancer genes: disclosure of genetic test results to relatives

“Out of the blue”: A qualitative study exploring the experiences of women and next of kin receiving unexpected results from BRA‐STRAP research gene panel testing

A qualitative study of the experiences of patients with prostate cancer when receiving negative genetic results: “I still don't have a grasp of what it all means”

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