| Title |
Recontacting Patients with Updated Genetic Testing Recommendations for Medullary Thyroid Carcinoma and Pheochromocytoma or Paraganglioma
|
|---|---|
| Published in |
Annals of Surgical Oncology, February 2018
|
| DOI | 10.1245/s10434-018-6366-0 |
| Pubmed ID | |
| Authors |
Minerva A. Romero Arenas, Thereasa A. Rich, Samuel M. Hyde, Naifa L. Busaidy, Gilbert J. Cote, Mimi I. Hu, Robert F. Gagel, Paul W. Gidley, Camilo Jimenez, Michael E. Kupferman, Susan K. Peterson, Steven I. Sherman, Anita Ying, Roland L. Bassett, Steven G. Waguespack, Nancy D. Perrier, Elizabeth G. Grubbs |
| Abstract |
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. 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. 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. 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. |
X Demographics
The data shown below were collected from the profiles of 4 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Saudi Arabia | 1 | 25% |
| United Kingdom | 1 | 25% |
| Unknown | 2 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 3 | 75% |
| Practitioners (doctors, other healthcare professionals) | 1 | 25% |
Mendeley readers
The data shown below were compiled from readership statistics for 41 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 41 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Ph. D. Student | 7 | 17% |
| Student > Bachelor | 6 | 15% |
| Student > Master | 5 | 12% |
| Researcher | 4 | 10% |
| Other | 3 | 7% |
| Other | 4 | 10% |
| Unknown | 12 | 29% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 10 | 24% |
| Biochemistry, Genetics and Molecular Biology | 5 | 12% |
| Psychology | 4 | 10% |
| Nursing and Health Professions | 2 | 5% |
| Social Sciences | 2 | 5% |
| Other | 6 | 15% |
| Unknown | 12 | 29% |
Attention Score in Context
This research output has an Altmetric Attention Score of 3. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 14 February 2018.
All research outputs
#13,504,909
of 23,023,224 outputs
Outputs from Annals of Surgical Oncology
#3,835
of 6,536 outputs
Outputs of similar age
#219,609
of 442,600 outputs
Outputs of similar age from Annals of Surgical Oncology
#68
of 93 outputs
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