Patients’ perceptions and practices of informing relatives: a qualitative study within a randomised trial on healthcare … – Nature.com

Prince AE, Cadigan RJ, Henderson GE, Evans JP, Adams M, Coker-Schwimmer E. et al. Is there evidence that we should screen the general population for Lynch syndrome with genetic testing? A systematic review. Pharmacogenomics Pers Med.2017;10:4960.

CAS Google Scholar

Nelson HD, Pappas M, Cantor A, Haney E, Holmes R. Risk Assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: updated evidence report and systematic review for the US Preventive Services Task Force. Jama. 2019;322:66685.

Article PubMed Google Scholar

Monahan KJ, Bradshaw N, Dolwani S, Desouza B, Dunlop MG, East JE, et al. Guidelines for the management of hereditary colorectal cancer from the British Society of Gastroenterology (BSG)/Association of Coloproctology of Great Britain and Ireland (ACPGBI)/United Kingdom Cancer Genetics Group (UKCGG). Gut. 2020;69:41144.

Article CAS PubMed Google Scholar

Young AL, Imran A, Spoelma MJ, Williams R, Tucker KM, Halliday J, et al. Proband-mediated interventions to increase disclosure of genetic risk in families with a BRCA or Lynch syndrome condition: a systematic review. Eur J Hum Genet. 2023;31:1834.

Article CAS PubMed Google Scholar

Ahsan MD, Levi SR, Webster EM, Bergeron H, Lin J, Narayan P, et al. Do people with hereditary cancer syndromes inform their at-risk relatives? A systematic review and meta-analysis. PEC Innov. 2023;2:100138.

Article PubMed PubMed Central Google Scholar

Gaff CL, Collins V, Symes T, Halliday J. Facilitating family communication about predictive genetic testing: probands perceptions. J Genet Couns. 2005;14:13340.

Article PubMed Google Scholar

Frey MK, Ahsan MD, Bergeron H, Lin J, Li X, Fowlkes RK, et al. Cascade testing for hereditary cancer syndromes: should we move toward direct relative contact? A systematic review and meta-analysis. J Clin Oncol. 2022;40:412943.

Article PubMed PubMed Central Google Scholar

Menko FH, van der Velden SL, Griffioen DN, Ait Moha D, Jeanson KN, Hogervorst FBL, et al. Does a proactive procedure lead to a higher uptake of predictive testing in families with a pathogenic BRCA1/BRCA2 variant? A family cancer clinic evaluation. J Genet Couns. 2023 [Internet]. Aug 21. Available from: https://www.ncbi.nlm.nih.gov/pubmed/37605508.

National clinical guidelines of breast cancer management [Internet]. Confederation of Regional Cancer Centres in Sweden. [cited 2023 Sept 10]. Available from: https://kunskapsbanken.cancercentrum.se/diagnoser/brostcancer/vardprogram/.

National clinical guidelines of colorectal cancer management [Internet]. Confederation of Regional Cancer Centres in Sweden. [cited 2023 Sept 10]. Available from: https://kunskapsbanken.cancercentrum.se/diagnoser/tjock-och-andtarmscancer/vardprogram/.

Hawranek C, Ehrencrona H, Ofverholm A, Hellquist BN, Rosen A. Direct letters to relatives at risk of hereditary cancer-study protocol for a multi-center randomized controlled trial of healthcare-assisted versus family-mediated risk disclosure at Swedish cancer genetics clinics (DIRECT-study). Trials. 2023;24:810.

Article PubMed PubMed Central Google Scholar

Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport, Exerc Health. 2019;11:58997.

Article Google Scholar

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77101.

Article Google Scholar

Forrest K, Simpson SA, Wilson BJ, van Teijlingen ER, McKee L, Haites N, et al. To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet. 2003;64:31726.

Article CAS PubMed Google Scholar

Gaff CL, Clarke AJ, Atkinson P, Sivell S, Elwyn G, Iredale R, et al. Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet. 2007;15:9991011.

Article PubMed Google Scholar

McGarragle KM, Hare C, Holter S, Facey DA, McShane K, Gallinger S, et al. Examining intrafamilial communication of colorectal cancer risk status to family members and kin responses to colonoscopy: a qualitative study. Hered Cancer Clin Pr. 2019;17:16.

Article Google Scholar

Henrikson NB, Blasi P, Figueroa Gray M, Tiffany BT, Scrol A, Ralston JD, et al. Patient and family preferences on health system-led direct contact for cascade screening. J Pers Med. 2021;11:538.

Article PubMed PubMed Central Google Scholar

Pedrazzani C, Aceti M, Schweighoffer R, Kaiser-Grolimund A, Brki N, Chappuis PO, et al. The communication chain of genetic risk: analyses of narrative data exploring probandprovider and probandfamily communication in hereditary breast and ovarian cancer. J Pers Med. 2022;12:1249.

Article PubMed PubMed Central Google Scholar

Srinivasan S, Won NY, Dotson WD, Wright ST, Roberts MC. Barriers and facilitators for cascade testing in genetic conditions: a systematic review. Eur J Hum Genet. 2020;28:163144.

Article PubMed PubMed Central Google Scholar

Daly MB. Family communication of genetic risk: a personalized approach. Curr Genet Med Rep. 2016;4:3540.

Article Google Scholar

Finn KS, Pacyna J, Azevedo Tsou C, Jewel Samadder N, Sharp R. Patient-reported anticipated barriers and benefits to sharing cancer genetic risk information with family members. Eur J Hum Genet. 2022;30:5361.

Article PubMed Google Scholar

Srinivasan S, Hampel H, Leeman J, Patel A, Kulchak Rahm A, Reuland DS, et al. Stakeholder perspectives on overcoming barriers to cascade testing in Lynch syndrome: a qualitative study. Cancer Prev Res. 2020;13:103746.

Article Google Scholar

Ballard LM, Band R, Lucassen AM. Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM). Eur J Hum Genet. 2023;31:9881002.

Article PubMed PubMed Central Google Scholar

Mendes A, Paneque M, Sousa L, Clarke A, Sequeiros J. How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence. Eur J Hum Genet. 2016;24:31525.

Article PubMed Google Scholar

Vos J, Menko F, Jansen AM, van Asperen CJ, Stiggelbout AM, Tibben A. A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives. Fam Cancer. 2011;10:8796.

Article PubMed Google Scholar

Jacobs C, Dancyger C, Smith JA, Michie S. Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives. Eur J Hum Genet. 2015;23:14751.

Article CAS PubMed Google Scholar

van den Heuvel LM, Hoedemaekers YM, Baas AF, Baars MJH, van Tintelen JP, Smets EMA, et al. A tailored approach to informing relatives at risk of inherited cardiac conditions: results of a randomised controlled trial. Eur J Hum Genet. 2022;30:20310.

Article PubMed Google Scholar

Jacobs C, Patch C, Michie S. Communication about genetic testing with breast and ovarian cancer patients: a scoping review. Eur J Hum Genet. 2019;27:51124.

Article PubMed Google Scholar

van den Heuvel LM, Smets EMA, van Tintelen JP, Christiaans I. How to inform relatives at risk of hereditary diseases? A mixed-methods systematic review on patient attitudes. J Genet Couns. 2019;28:104258.

Article PubMed Google Scholar

Eijzenga W, de Geus E, Aalfs CM, Menko FH, Sijmons RH, de Haes H, et al. How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial. Patient Educ Couns. 2018;101:16119.

Article PubMed Google Scholar

Pedrazzani C, Ming C, Burki N, Caiata-Zufferey M, Chappuis PO, Duquette D, et al. Genetic literacy and communication of genetic information in families concerned with hereditary breast and ovarian cancer: a cross-study comparison in two countries and within a timeframe of more than 10 years. Cancers. 2021;13:6254.

Article PubMed PubMed Central Google Scholar

Paul J, Metcalfe S, Stirling L, Wilson B, Hodgson J. Analyzing communication in genetic consultations-a systematic review. Patient Educ Couns. 2015;98:1533.

Article PubMed Google Scholar

Henrikson NB, Blasi PR, Fullerton SM, Grafton J, Leppig KA, Jarvik GP, et al. It would be so much easier: health system-led genetic risk notification-feasibility and acceptability of cascade screening in an integrated system. J Community Genet. 2019;10:46170.

Article PubMed PubMed Central Google Scholar

Dheensa S, Fenwick A, Lucassen A. Is this knowledge mine and nobody elses? I dont feel that. Patient views about consent, confidentiality and information-sharing in genetic medicine. J Med Eth. 2016;42:1749.

Article Google Scholar

Tam NT, Huy NT, Thoa le TB, Long NP, Trang NT, Hirayama K, et al. Participants understanding of informed consent in clinical trials over three decades: systematic review and meta-analysis. Bull World Health Organ. 2015;93:18698H.

Article PubMed PubMed Central Google Scholar

Blasi PR, Scrol A, Anderson ML, Gray MF, Tiffany B, Fullerton SM, et al. Feasibility, acceptability, and limited efficacy of health system-led familial risk notification: protocol for a mixed-methods evaluation. Pilot Feasibility Stud. 2022;8:174.

Article PubMed PubMed Central Google Scholar

Kim S, Aceti M, Baroutsou V, Burki N, Caiata-Zufferey M, Cattaneo M, et al. Using a Tailored Digital Health Intervention for family communication and cascade genetic testing in Swiss and Korean families with hereditary breast and ovarian cancer: protocol for the DIALOGUE study. JMIR Res Protoc. 2021;10:e26264.

Article PubMed PubMed Central Google Scholar

Siglen E, Vetti HH, Augestad M, Steen VM, Lunde A, Bjorvatn C. Evaluation of the Rosa chatbot providing genetic information to patients at risk of hereditary breast and ovarian cancer: qualitative interview study. J Med Internet Res. 2023;25:e46571.

Article PubMed PubMed Central Google Scholar

Read more from the original source:

Patients' perceptions and practices of informing relatives: a qualitative study within a randomised trial on healthcare ... - Nature.com

Related Posts

Comments are closed.