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A Survey of Patients’ Experiences with the Cancer Genetic Counseling Process: Recommendations for Cancer Genetics Programs
Author(s) -
Kausmeyer Dana T.,
Lengerich Eugene J.,
Kluhsman Brenda C.,
Morrone Dorothy,
Harper Gregory R.,
Baker Maria J.
Publication year - 2006
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-006-9039-2
Subject(s) - genetic counseling , cancer , cancer genetics , medicine , family medicine , genetic testing , public health , psychology , nursing , genetics , biology
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.