title: Delivering information about cancer genetics via letter to patients at low and moderate risk of familial cancer: a pilot study in Wales.
abstract: Increasing demands upon specialist cancer genetics services have resulted in a need to explore alternative means of delivering genetic risk information to individuals at low-risk of familial cancer. This pilot study investigates patient satisfaction with a letter to low and moderate risk individuals notifying them of their risk. Sixty-six people completed a questionnaire designed to measure satisfaction with the way they had been notified of their cancer risk. Two key findings emerge from the data: first of all, whilst many respondents indicated overall satisfaction with the risk letter, a substantial number wanted more information about their risk; and secondly, low-risk individuals in this study are less reassured by and less satisfied with the risk letter than those at moderate risk. The optimal service provision for delivery of genetic risk information is likely to be one which can best respond to individual differences in information-seeking, distress and risk comprehension. There is a need therefore, for a randomised control trial to compare the effectiveness of a risk notification letter with more traditional telephone risk counselling and the implications of each mode of delivery upon the resources of specialist cancer genetics services.
authors.affiliation: Department of General Practice, University of Wales College of Medicine, Cardiff, UK.
authors.forename: C
authors.initials: C
authors.lastname: Phelps
authors.forename: K
authors.initials: K
authors.lastname: Platt
authors.forename: L
authors.initials: L
authors.lastname: France
authors.forename: J
authors.initials: J
authors.lastname: Gray
authors.forename: R
authors.initials: R
authors.lastname: Iredale
mesh_terms: D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000453:epidemiology / Q000235:genetics* / Q000473:pathology; D015179:Colorectal Neoplasms / Q000453:epidemiology / Q000235:genetics* / Q000473:pathology; D015709:Correspondence as Topic; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006801:Humans; D008297:Male; D008490:Medical Informatics; D008875:Middle Aged; D009367:Neoplasm Staging; D010353:Patient Education as Topic / Q000379:methods*; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D010375:Pedigree; D010865:Pilot Projects; D012189:Retrospective Studies; D018570:Risk Assessment; D012944:Social Support; D011795:Surveys and Questionnaires; D014852:Wales / Q000453:epidemiology