The authors hypothesized that cancer recurrence can be understood and therefore treated as a traumatic event that places patients at risk for stress response symptoms. To test this, they gave 40 patients with recurrent malignancies of mixed sites the Impact of Event Scale (a measure of response to specific stressors), the Psychosocial Adjustment to Illness Scale-Self-Report version (a measure of general adjustment to illness), and a semi-structured interview in which the patients were asked about their reactions to and experiences surrounding the recurrence, compared with those surrounding their initial diagnosis. In self-report measures and in the interview, patients clearly perceived that adjustment to recurrence is more problematic than adjustment to initial diagnosis. The findings were consistent with an expectation derived from the stress-disorder literature: patients who reported having been completely surprised by the recurrence and those undergoing their first recurrence showed significantly more intrusive and avoidant stress response symptoms. Given the heterogeneity of the patient population and the relatively limited sample size, further study is needed to assess the contribution of other important mediating factors in the development of stress disorders. Because the predictors in this study (extent of surprise and number of previous recurrences) can be identified before or immediately following a recurrence, primary and secondary interventions might help prevent stress disorders in patients who may have had unrealistic expectations.
Many persons diagnosed with malignancy will experience one or more recurrences of malignancy. Little is known about the psychosocial meaning of recurrent cancer. Using Lazarus and Folkman's model of stress, appraisal and coping, the two purposes of this descriptive study were to (a) describe the meaning of a recurrence of cancer to the patient and (b) to explore if the patient perceives the diagnosis of recurrence as being different from the initial diagnosis of cancer. Purposeful sampling for persons with recent recurrent malignancy produced a sample (n = 20). Subjects completed an unstructured, indepth interview. The meaning of the recurrence was influenced by prior cancer-related experiences of the subjects and dominated by death and death-related concerns. Differences from the initial diagnosis included a deeper awareness of the significance of the "cancer diagnosis".
Purpose In this ongoing national case series, we document 25 new genetic testing cases in which tests were recommended, ordered, interpreted, or used incorrectly. Methods An invitation to submit cases of adverse events in genetic testing was issued to the general National Society of Genetic Counselors Listserv, the National Society of Genetic Counselors Cancer Special Interest Group members, private genetic counselor laboratory groups, and via social media platforms (i.e., Facebook, Twitter, LinkedIn). Examples highlighted in the invitation included errors in ordering, counseling, and/or interpretation of genetic testing and did not limit submissions to cases involving genetic testing for hereditary cancer predisposition. Clinical documentation, including pedigree, was requested. Twenty-five cases were accepted, and a thematic analysis was performed. Submitters were asked to approve the representation of their cases before manuscript submission. Results All submitted cases took place in the United States and were from cancer, pediatric, preconception, and general adult settings and involved both medical-grade and direct-to-consumer genetic testing with raw data analysis. In 8 cases, providers ordered the wrong genetic test. In 2 cases, multiple errors were made when genetic testing was ordered. In 3 cases, patients received incorrect information from providers because genetic test results were misinterpreted or because of limitations in the provider's knowledge of genetics. In 3 cases, pathogenic genetic variants identified were incorrectly assumed to completely explain the suspicious family histories of cancer. In 2 cases, patients received inadequate or no information with respect to genetic test results. In 2 cases, result interpretation/documentation by the testing laboratories was erroneous. In 2 cases, genetic counselors reinterpreted the results of people who had undergone direct-to-consumer genetic testing and/or clarifying medical-grade testing was ordered. Discussion As genetic testing continues to become more common and complex, it is clear that we must ensure that appropriate testing is ordered and that results are interpreted and used correctly. Access to certified genetic counselors continues to be an issue for some because of workforce limitations. Potential solutions involve action on multiple fronts: new genetic counseling delivery models, expanding the genetic counseling workforce, improving genetics and genomics education of nongenetics health care professionals, addressing health care policy barriers, and more. Genetic counselors have also positioned themselves in new roles to help patients and consumers as well as health care providers, systems, and payers adapt to new genetic testing technologies and models. The work to be done is significant, but so are the consequences of errors in genetic testing.
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