ArticleHereditary cancer in clinical practice2011
Lynch syndrome: barriers to and facilitators of screening and disease management.
Article in Hereditary cancer in clinical practice, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers.
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Who cites it
32 citing papers in PubMed.
- Non-invasive screening in hereditary cancer: a randomized controlled trial to test cell-free DNA-based early detection in the CHARM consortium.European journal of human genetics : EJHG · 2026Trial
- "Where do I go from here?" Navigating a lifelong road without a map: the care experiences of hereditary cancer patients.European journal of human genetics : EJHG · 2026Article
- Barriers and facilitators of adherence to cancer prevention in Lynch Syndrome: an integrative review.Hereditary cancer in clinical practice · 2026Review
- Suboptimal Adherence to Hereditary Cancer Risk Management Guidelines: A Cohort Study of High-Risk Individuals in Newfoundland and Labrador, Canada.Current oncology (Toronto, Ont.) · 2026Article
- Utilization of care and alignment of screening with NCCN guidelines for patients with Lynch syndrome: a retrospective cohort study.Hereditary cancer in clinical practice · 2026Article
- Article
- Oncology nurses' readiness to implement genomics-informed care: A descriptive, cross-sectional study in a Canadian province.Canadian oncology nursing journal = Revue canadienne de nursing oncologique · 2026Article
- Recontact and follow-up for individuals with germline pathogenic variants in hereditary breast and ovarian cancer susceptibility genes: a UK Cancer Genetics Group consensus meeting.Journal of medical genetics · 2025Article
- Comprehensive Screening for Early Cancer Detection in Individuals With Genetic Predisposition.JCO precision oncology · 2025Article
- Canadian consensus for the assessment and testing of Lynch syndrome.Journal of medical genetics · 2025Article
- Early-onset Colorectal Cancer Patients Do Not Require Shorter Intervals for Post-surgical Surveillance Colonoscopy.Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association · 2024Article
- Families' experiences accessing care after genomic sequencing in the pediatric cancer context: "It's just been a big juggle".Journal of genetic counseling · 2024Article
- Current and new frontiers in hereditary cancer surveillance: Opportunities for liquid biopsy.American journal of human genetics · 2023Review
- Person-based co-design of a decision aid template for people with a genetic predisposition to cancer.Frontiers in digital health · 2022Article
- Article
- From the patient to the population: Use of genomics for population screening.Frontiers in genetics · 2022Article
- Uptake and outcomes of small intestinal and urinary tract cancer surveillance in Lynch syndrome.World journal of clinical oncology · 2021Article
- Patient-physician relationships, health self-efficacy, and gynecologic cancer screening among women with Lynch syndrome.Hereditary cancer in clinical practice · 2019Article
- Patient and provider perspectives on adherence to and care coordination of lynch syndrome surveillance recommendations: findings from qualitative interviews.Hereditary cancer in clinical practice · 2018Article
- Quality of life following prophylactic gynecological surgery: experiences of female Lynch mutation carriers.Familial cancer · 2018Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLynch syndrome is a hereditary cancer with confirmed carriers at high risk for colorectal (CRC) and extracolonic cancers. The purpose of the current study was to develop a greater understanding of the factors influencing decisions about disease management post-genetic testing.
methodsThe study used a grounded theory approach to data collection and analysis as part of a multiphase project examining the psychosocial and behavioral impact of predictive DNA testing for Lynch syndrome. Individual and small group interviews were conducted with individuals from 10 families with the MSH2 intron 5 splice site mutation or exon 8 deletion. The data from confirmed carriers (n = 23) were subjected to re-analysis to identify key barriers to and/or facilitators of screening and disease management.
resultsThematic analysis identified personal, health care provider and health care system factors as dominant barriers to and/or facilitators of managing Lynch syndrome. Person-centered factors reflect risk perceptions and decision-making, and enduring screening/disease management. The perceived knowledge and clinical management skills of health care providers also influenced participation in recommended protocols. The health care system barriers/facilitators are defined in terms of continuity of care and coordination of services among providers.
conclusionsIndividuals with Lynch syndrome often encounter multiple barriers to and facilitators of disease management that go beyond the individual to the provider and health care system levels. The current organization and implementation of health care services are inadequate. A coordinated system of local services capable of providing integrated, efficient health care and follow-up, populated by providers with knowledge of hereditary cancer, is necessary to maintain optimal health.
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