ArticleHereditary cancer in clinical practice2019
Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study.
Article in Hereditary cancer in clinical practice, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
17 citing papers in PubMed, 21 citations in OpenAlex.
- Healthcare professional perspectives on hereditary breast cancer risk assessment prior to gender-affirming mastectomy.Breast cancer research and treatment · 2026Article
- Younger age at colorectal cancer diagnosis in hereditary gastrointestinal cancer predisposition syndromes and Lynch syndrome: a nationwide analysis.Journal of gastrointestinal oncology · 2026Article
- Factors Associated with Adherence to Recommended Colorectal Surveillance Intervals in Lynch Syndrome.Cancers · 2026Article
- 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
- Patient and provider perspectives on how a mobile health application may address barriers to Lynch Syndrome care.Familial cancer · 2025Article
- Contemporary Surgical Management of Colorectal Cancer in Lynch Syndrome: Considering the Implications of Known Genotype.ANZ journal of surgery · 2025Review
- Assessment of barriers to pancreatic cancer surveillance in high-risk individuals.Journal of genetic counseling · 2025Article
- Family history and cancer risk study (FOREST): A clinical trial assessing electronic patient-directed family history input for identifying patients at risk of hereditary cancer.Contemporary clinical trials · 2025Article
- ItaLynch: an ongoing Italian study to evaluate the feasibility of mainstreaming the diagnosis of Lynch syndrome in colorectal cancer patients.ESMO gastrointestinal oncology · 2024Article
- Experiences of patients and family members with follow-up care, information needs and provider support after identification of Lynch Syndrome.Hereditary cancer in clinical practice · 2023Article
- Balancing the burden and benefits of colonoscopy in Lynch Syndrome.Familial cancer · 2023Article
- Development of an Electronic Health Record-Based Clinical Decision Support Tool for Patients With Lynch Syndrome.JCO clinical cancer informatics · 2023Article
- The Role of Colonoscopy in the Management of Individuals with Lynch Syndrome: A Narrative Review.Cancers · 2023Review
- MyLynch: A Patient-Facing Clinical Decision Support Tool for Genetically-Guided Personalized Medicine in Lynch Syndrome.Cancers · 2023Article
- Risk-reducing surgery in unaffected individuals receiving cancer genetic testing in an integrated health care system.Cancer · 2022Article
- Room for improvement: One third of Lynch syndrome patients presenting for genetic testing in a highly specialised centre in Stockholm already have cancer.Hereditary cancer in clinical practice · 2021Article
- Systemic Barriers to Risk-Reducing Interventions for Hereditary Cancer Syndromes: Implications for Health Care Inequities.JCO precision oncology · 2021Review
Corrections and comments
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Authors and funding
17 authors at 6 institutions in 1 country.
Funding
Abstract
backgroundLynch syndrome (LS) is the most common hereditary colorectal cancer (CRC) syndrome. This study assesses trends in diagnosis of LS and adherence to recommended LS-related care in a large integrated healthcare organization (~ 575,000 members).
methodsElectronic medical record (EMR) data (1999-2015) were examined to identify patients with a diagnosis of LS. We examined their LS-associated care recommendations and adherence to these recommendations. Qualitative patient and provider interviews were conducted with the aim of identifying opportunities for improved care delivery.
resultsWe identified 74 patients with a diagnosis of LS; 64% were diagnosed with a LS-related malignancy prior to their diagnosis of LS. The time to LS diagnosis following development of a LS-related cancer decreased over time: before 2009 11% of individuals received a diagnosis of LS within 1 year of developing a LS-related cancer compared to 83% after 2009 (
conclusionsWe identified fewer than expected patients with LS in our large care system, indicating that there is still a diagnostic care gap. However, patients with LS were likely to receive and follow CRC surveillance recommendations. Recommendations for and adherence to extracolonic surveillance were variable. Improved care coordination and clearer documentation of the LS diagnosis is needed.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.