What would I do? Perspectives on the factors underlying Lynch syndrome genetic testing and results sharing decisions for high‐risk colorectal cancer patients
| العنوان: | What would I do? Perspectives on the factors underlying Lynch syndrome genetic testing and results sharing decisions for high‐risk colorectal cancer patients |
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| المؤلفون: | Emily Hogden, Karen Canfell, Natalie Taylor, April Morrow, Victoria Freeman, Gabriella Tiernan, Yoon-Jung Kang |
| المصدر: | Psycho-Oncology. 31:587-596 |
| بيانات النشر: | Wiley, 2021. |
| سنة النشر: | 2021 |
| مصطلحات موضوعية: | medicine.diagnostic_test, Cost-Benefit Analysis, Australia, Psycho-oncology, Psychological intervention, Experimental and Cognitive Psychology, Context (language use), Colorectal Neoplasms, Hereditary Nonpolyposis, Psychiatry and Mental health, Oncology, Vignette, Facilitator, medicine, Humans, Family, Genetic Testing, Thematic analysis, Psychology, Clinical psychology, Qualitative research, Genetic testing |
| الوصف: | OBJECTIVE Universal tumour testing for Lynch syndrome (LS) in all incident colorectal cancers (CRCs) and sequential diagnostic genetic testing is cost-effective in Australia. Because of this, our study aimed to understand factors underlying possible decisions faced by tumour test-positive CRC patients and their at-risk relatives throughout the LS diagnosis pathway. METHODS Semi-structured telephone interviews were conducted with 23 participants, using four hypothetical scenarios. Vignette-guided closed- and open-ended questions asked about LS genetic testing uptake, discussing diagnosis with at-risk relatives, and risk-reducing interventions. Personal perspectives on genetic testing were collected pre-post vignette discussion. Inductive thematic analysis was performed on open-ended questions. Decisional pathway diagrams were developed to convey factors influencing complex decision-making processes. RESULTS Participant responses incorporated unfolding scenario information, resulting in three decision themes: (1) wanting to know one's LS status; (2) informing family about LS; (3) navigating risk-reducing interventions. Across all themes, 'knowledge' emerged as a facilitator, and 'negative emotional experience' as a barrier. Personal supportive views toward genetic testing increased post-interview. CONCLUSIONS When communicating with tumour test-positive CRC patients or their relatives about LS genetic testing, providing guidance/resources to inform decisions around risk-reducing interventions and informing family members is critical. Scenario-driven interviews provide insight into what individuals might do when facing complex healthcare decisions and could aid informed decision-making. This approach may be applicable in other conditions, particularly with mainstreaming being increasingly introduced into the genetic context. |
| تدمد: | 1099-1611 1057-9249 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a6e0804ad0d3347c35ee5d67c3b655b2Test https://doi.org/10.1002/pon.5840Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....a6e0804ad0d3347c35ee5d67c3b655b2 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 10991611 10579249 |
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