ArticleHereditary cancer in clinical practice2014
Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference.
Article in Hereditary cancer in clinical practice, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04738708 (Telegenetics or In-Person Genetic Counselling), which is not on this map. Cited by 11 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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.
Telegenetics or In-Person Genetic Counselling: A Comparison of Clinical Outcomes and Cost
Who cites it
11 citing papers in PubMed, 28 citations in OpenAlex.
- A WeChat-Based Decision Aid Intervention to Promote Informed Decision-Making for Family Members Regarding the Genetic Testing of Patients With Colorectal Cancer: Randomized Controlled Trial.Journal of medical Internet research · 2025Trial
- Patient-derived outcome assessment of knowledge, communication, and management in those diagnosed with BAP1-tumor predisposition syndrome.Familial cancer · 2026Article
- Hereditary Nonpolyposis Colon Cancer (Lynch Syndrome): An Emerging Public Health Concern.Health science reports · 2025Article
- Understanding patient-reported knowledge of hernia surgery: a quantitative study.Hernia : the journal of hernias and abdominal wall surgery · 2022Article
- The Risk-Reducing Effect of Aspirin in Lynch Syndrome Carriers: Development and Evaluation of an Educational Leaflet.Advanced genetics (Hoboken, N.J.) · 2022Article
- Illness experience and coping styles of young and middle-aged patients with sudden sensorineural hearing loss: a qualitative study.BMC health services research · 2021Article
- Systemic Barriers to Risk-Reducing Interventions for Hereditary Cancer Syndromes: Implications for Health Care Inequities.JCO precision oncology · 2021Review
- Experience Gained from the Development and Execution of a Multidisciplinary Multi-syndrome Hereditary Colon Cancer Family Conference.Journal of cancer education : the official journal of the American Association for Cancer Education · 2019Article
- Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis.Patient education and counseling · 2018Article
- Parents' Understanding of Genetics and Heritability.Journal of genetic counseling · 2017Article
- Educational and Psychosocial Support Needs in Lynch Syndrome: Implementation and Assessment of an Educational Workshop and Support Group.Journal of genetic counseling · 2017Article
Corrections and comments
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Authors and funding
8 authors at 1 institution in 1 country.
Funding
Abstract
backgroundPatients with Lynch Syndrome, the most common hereditary colorectal cancer syndrome, benefit from genetic education and family counseling regarding diagnostic testing and cancer surveillance/prevention recommendations. Although genetic counseling is currently the most common venue where such education and counseling takes place, little is known about the level of disease knowledge and education needs as directly reported by patients and families with Lynch Syndrome. Furthermore, experiences with forums for larger-scale knowledge transfer have been limited in the current literature.
methodsWe conducted a one-day interactive multidisciplinary patient conference, designed to complement individual genetic counseling for updating disease knowledge, supportive networking and needs assessment among Lynch Syndrome patients and their family members. The patient conference was designed utilizing the conceptual framework of action research. Paired pre- and post-conference surveys were administered to 44 conference participants anonymously to assess patient-reported disease knowledge and education needs.
resultsA multidisciplinary team of expert providers utilized a variety of educational formats during the one-day conference. Four main focus areas were: genetic testing, surveillance/prevention, living with Lynch Syndrome, and update on research. Thirty-two participants (73%) completed the pre-conference, and 28 (64%) participants completed the post-conference surveys. Nineteen respondents were affected and the remaining were unaffected. The scores of the disease-knowledge items significantly increased from 84% pre- to 92% post-conference (p = 0.012). Patients reported a high level of satisfaction and identified further knowledge needs in nutrition (71%), surveillance/prevention options (71%), support groups (36%), cancer risk assessment (32%), active role in medical care (32%), and research opportunities (5%).
conclusionOur experience with a dedicated patient education conference focused on Lynch Syndrome demonstrated that such an educational format is effective for updating or reinforcing disease knowledge, for identifying patient-reported unmet educational needs, as well as for peer-support.
Identifiers
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Registered trials
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.