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Recontacting Patients with Updated Genetic Testing Recommendations for Medullary Thyroid Carcinoma and Pheochromocytoma or Paraganglioma
- Source :
- Ann Surg Oncol
- Publication Year :
- 2018
- Publisher :
- Springer Science and Business Media LLC, 2018.
-
Abstract
- BACKGROUND. No guidelines exist regarding physicians’ duty to inform former patients about novel genetic tests that may be medically beneficial. Research on the feasibility and efficacy of disseminating information and patient opinions on this topic is limited. METHODS. Adult patients treated at our institution from 1950 to 2010 for medullary thyroid cancer, pheochromocytoma, or paraganglioma were included if their history suggested being at-risk for a hereditary syndrome but genetic risk assessment would be incomplete by current standards. A questionnaire assessing behaviors and attitudes was mailed 6 weeks after an information letter describing new genetic tests, benefits, and risks was mailed. RESULTS. Ninety-seven of 312 (31.1%) eligible patients with an identified mailing address returned the questionnaire. After receiving the letter, 29.2% patients discussed genetic testing with their doctor, 39.3% considered pursuing genetic testing, and 8.5% underwent testing. Nearly all respondents (97%) indicated that physicians should inform patients about new developments that may improve their or their family’s health, and 71% thought patients shared this responsibility. Most patients understood the letter (84%) and were pleased it was sent (84%), although 11% found it upsetting. CONCLUSIONS. Patients believe it is important for physicians to inform them of potentially beneficial developments in genetic testing. However, physician-initiated letters to introduce new information appear inadequate alone in motivating patients to seek additional genetic counseling and testing. Further research is needed regarding optimal methods to notify former patients about new genetic tests and corresponding clinical and ethical implications.
- Subjects :
- Adult
Male
0301 basic medicine
Health Knowledge, Attitudes, Practice
medicine.medical_specialty
Medullary cavity
Genetic counseling
Adrenal Gland Neoplasms
Genetic Counseling
Pheochromocytoma
030105 genetics & heredity
Article
Paraganglioma
Thyroid carcinoma
03 medical and health sciences
0302 clinical medicine
Surveys and Questionnaires
medicine
Humans
Genetic Testing
Thyroid Neoplasms
Physician's Role
Aged
Genetic testing
Aged, 80 and over
Motivation
medicine.diagnostic_test
Adult patients
business.industry
Communication
Medullary thyroid cancer
Middle Aged
medicine.disease
Carcinoma, Neuroendocrine
Oncology
030220 oncology & carcinogenesis
Family medicine
Female
Surgery
business
Subjects
Details
- ISSN :
- 15344681 and 10689265
- Volume :
- 25
- Database :
- OpenAIRE
- Journal :
- Annals of Surgical Oncology
- Accession number :
- edsair.doi.dedup.....b97d827e4021eda71a9fa8f066e68914