TY - JOUR
T1 - A survey of patients' experiences with the cancer genetic counseling process
T2 - Recommendations for cancer genetics programs
AU - Kausmeyer, Dana T.
AU - Lengerich, Eugene J.
AU - Kluhsman, Brenda C.
AU - Morrone, Dorothy
AU - Harper, Gregory R.
AU - Baker, Maria J.
N1 - Funding Information:
Patients experienced increased anxiety and fear, while waiting for their test results. As such, patients may benefit from additional support during this time period and they should be made aware of available resources that may serve this important role. The FORCE website (Facing Our Risk of Cancer Empowered, www.facingourrisk.org) is one such resource which was developed to provide information and support to women who are at increased risk for breast and/or ovarian cancer and their families. A peer-support helpline represents another possible resource, such as one initially developed by the University of Pennsylvania, Abramson Cancer Center in collaboration with FORCE and supported by a research grant through the US Department of Defense Breast Center Research Program (1-866-824-RISK). By making these resources available, patients can receive additional support, not only during a time of uncertainty while waiting for test results, but also afterwards as they adjust to and utilize the information for medical management decisions in consultation with their physicians. Additionally, these resources can provide support to patients as they face new challenges in transmitting complex information to family members who may not always be receptive. Of importance, most patients who were identified to carry a mutation were pleased that they had pursued testing. However, 6 out of 32 patients (18.8%) found to carry a mutation still expressed feelings of fear for family and self, similar to those waiting for test results. To address this need, some programs have developed support groups specifically for patients with a hereditary predisposition to cancer. Although there are inherent challenges in sustaining the membership of such a specialized support group, it is an area which, if fostered, could substantially improve the overall experience of patients undergoing genetic testing, adjusting to results which identify a hereditary predisposition to cancer and embarking on the task of sharing this information with relatives at risk.
Funding Information:
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.
PY - 2006/12
Y1 - 2006/12
N2 - 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.
AB - 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.
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U2 - 10.1007/s10897-006-9039-2
DO - 10.1007/s10897-006-9039-2
M3 - Article
C2 - 17106634
AN - SCOPUS:33845434719
VL - 15
SP - 409
EP - 431
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
SN - 1059-7700
IS - 6
ER -