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.
Highlights
Patients 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
Patients are most commonly predisposed to developing colorectal cancer (CRC), with reported lifetime risks ranging from 20-80%. [1,2] They are at risk for multiple extra-colonic cancers, including endometrial, ovarian, gastric, small bowel, hepato-pancreatic-biliary, genitourinary, sebaceous skin, and glioblastoma [3,4,5]
Action research is a broad style of research that has been widely applied in the field of education
Summary
Patients 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. 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. Genetic counseling is the most common platform wherein the counselor transfers knowledge of the natural history, mode of transmission, and risks of a genetic disorder to patients and families. It represents the main venue for discussing cancer risk management including recommended cancer surveillance and risk-reducing strategies, along with psychosocial support.
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