Abstract 5949
Background
In hereditary cancers, disclosure of genetic testing and communication of genetic information to family members is crucial to manage their potential cancer risk. In Switzerland, according to privacy law, genetic information can be passed on to at-risk relatives only through the individual identified with the pathogenic mutation but 20-40% of at-risk family members remain unaware of relevant genetic information and less than 50% refer to genetic services. Healthcare providers have a relevant and challenging role in supporting family communication on genetics but this is still limited and not clear. The aim of the study is to explore how mutation carriers’ communicate about genetics within family members and how this is concretely supported in clinical practice.
Methods
Ongoing qualitative study. Data are collected with distinct focus groups with a purposeful sample of about 30 hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) mutation carriers and 30 relatives from three linguistic areas of Switzerland. The sample is diversified in terms of gender, clinical history and attitude towards family communication. Interviews with 15 healthcare providers routinely involved in genetic counselling are performed, too. Data collection and data analysis continue iteratively until data saturation according to constant comparative method.
Results
Qualitative data from focus groups and interviews show that family communication of genetic information is complex, affected by a wide variety of factors and closely interconnected with the disease condition. Communication to family members takes place according to different patterns and changes along the trajectory of life and illness. Healthcare providers play an important role.
Conclusions
Supporting communication of genetic information within family members is a challenging aspect of genetic healthcare and risk communication. Research about communication on genetics is timely and essential to implement interventions that can enhance cascade testing and genetic information for cancer prevention and control in clinical practice and for multilevel public health initiatives.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
Resources from the same session
4370 - Continental differences in pathologic response with neoadjuvant ipilimumab (IPI) plus nivolumab (NIVO) in patients with macroscopic stage III melanoma in the phase 2 OpACIN-neo trial.
Presenter: Irene Reijers
Session: Poster Display session 3
Resources:
Abstract
3230 - Comparable responses of melanoma at primary site and synchronous lymph node metastases upon neoadjuvant ipilimumab (IPI) and nivolumab (NIVO)
Presenter: Judith Versluis
Session: Poster Display session 3
Resources:
Abstract
3171 - Adjuvant Therapies for Stage III Melanoma: Benchmarks for Bringing Clinical Trials to Clinical Practice
Presenter: Tina HIEKEN
Session: Poster Display session 3
Resources:
Abstract
3493 - Mixture-cure modeling for resected stage III/IV melanoma in the phase 3 CheckMate 238 trial
Presenter: Jeffrey Weber
Session: Poster Display session 3
Resources:
Abstract
3036 - An open-label, non-randomized, phase IIIb study of trametinib in combination with dabrafenib for patients with unresectable advanced BRAFV600-mutant melanoma: a subgroup analysis of patients with brain metastasis
Presenter: Caroline Dutriaux
Session: Poster Display session 3
Resources:
Abstract
2233 - Adverse event (AE) kinetics in patients (pts) treated with dabrafenib + trametinib (D + T) in the metastatic and adjuvant setting
Presenter: Jean Jacques Grob
Session: Poster Display session 3
Resources:
Abstract
2435 - A Single Arm, Open Label, Phase II, Multicenter Study to Assess the Detection of the BRAF V600 Mutation on cfDNA from Plasma in Patients with Advanced Melanoma
Presenter: Piotr Rutkowski
Session: Poster Display session 3
Resources:
Abstract
1766 - Efficacy and Safety of Dabrafenib and Trametinib in Patients with Metastatic BRAFV600 Mutation-positive Melanoma in the Real-World Setting – Interim results of the non-interventional COMBI-r study
Presenter: Carola Berking
Session: Poster Display session 3
Resources:
Abstract
2131 - Trial update: A randomized Phase Ib/II study of the selective small molecule Axl inhibitor Bemcentinib (BGB324) in combination with either dabrafenib/trametinib (D/T) or pembrolizumab in patients with metastatic melanoma
Presenter: Oddbjørn Straume
Session: Poster Display session 3
Resources:
Abstract
4074 - Analysis of pyrexia in patients (pts) treated with dabrafenib (D) and/or trametinib (T) across clinical trials
Presenter: Caroline Robert
Session: Poster Display session 3
Resources:
Abstract