A Survey of Patients’ Experiences with the Cancer Genetic Counseling Process: Recommendations for Cancer Genetics Programs
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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.
KEY WORDS:cancer genetic counseling cancer risk assessment quality improvement patient satisfaction hereditary cancer
This work was supported by the Penn State Cancer Institute. The authors gratefully acknowledge Carol Weisman, Ph.D. for her helpful comments during the development of the survey instrument, Linda Nelson for providing administrative assistance in distributing the surveys, and to the patients who offered their insight by completing the survey so that others could benefit from their experiences.
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