title: A survey of patients' experiences with the cancer genetic counseling process: recommendations for cancer genetics programs.
abstract: In order to promote ongoing quality improvement of not only the Penn State Cancer Genetics Program, but also other cancer risk assessment programs throughout the country, we developed, piloted and conducted a survey to explore patient expectations, experiences, and satisfaction with the cancer genetic counseling process. The comprehensive survey was mailed to 340 eligible patients, 156 (45.9%) of whom returned the completed survey within the allotted time. Responses to closed-ended questions were tallied and open-ended questions were content analyzed. Major findings show that: (1) Patients were seeking cancer-related information and support throughout the cancer risk assessment process and were interested in participating in available research studies; (2) The setting in which patients are seen for cancer risk assessment may pose potential emotional ramifications; (3) Misperceptions regarding insurance discrimination and lack of insurance coverage persist; (4) Patients view the genetic counselor as responsible for updating them about new discoveries. Specific recommendations for cancer genetics programs are included.
authors.affiliation: College of Medicine, Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania, USA.
authors.forename: Dana T
authors.initials: DT
authors.lastname: Kausmeyer
authors.forename: Eugene J
authors.initials: EJ
authors.lastname: Lengerich
authors.forename: Brenda C
authors.initials: BC
authors.lastname: Kluhsman
authors.forename: Dorothy
authors.initials: D
authors.lastname: Morrone
authors.forename: Gregory R
authors.initials: GR
authors.lastname: Harper
authors.forename: Maria J
authors.initials: MJ
authors.lastname: Baker
mesh_terms: D001294:Attitude to Health; D003710:Demography; D005260:Female; D005817:Genetic Counseling / Q000379:methods*; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000235:genetics*; D017060:Patient Satisfaction; D010361:Patients / Q000523:psychology*; D016730:Program Development; D012017:Referral and Consultation; D018570:Risk Assessment