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Recontacting Patients with Updated Genetic Testing Recommendations for Medullary Thyroid Carcinoma and Pheochromocytoma or Paraganglioma

  • Endocrine Tumors
  • Published:
Annals of Surgical Oncology Aims and scope Submit manuscript

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.

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Acknowledgment

The authors acknowledge the National Society of Genetic Counselors Cancer Special Interest Group for their generous funding for this project. This work was supported in part by the American Cancer Society Mentored Grant “Identifying key factors affecting the clinical course of MEN2-related MTC.”

Disclosures

Steven I. Sherman is a consultant for LOXO, Novartis, Veracyte, NovoNordisk, Genzyme, Bristol-Myers Squibb, Eisai Medical Research. The remaining authors have no financial disclosures to make.

Author information

Author notes

  1. Nancy D. Perrier and Elizabeth G. Grubbs have contributed equally to the work.

Authors and Affiliations

  1. Department of Surgical Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Minerva A. Romero Arenas MD, MPH, Thereasa A. Rich MS, Nancy D. Perrier MD & Elizabeth G. Grubbs MD, FACS

  2. Department of Clinical Cancer Genetics, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Samuel M. Hyde MMSc

  3. Department of Endocrine Neoplasia & Hormonal Disorders, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Naifa L. Busaidy MD, Gilbert J. Cote PhD, Mimi I. Hu MD, Robert F. Gagel MD, Camilo Jimenez MD, Steven I. Sherman MD, Anita Ying MD & Steven G. Waguespack MD

  4. Department of Head & Neck Surgery, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Paul W. Gidley MD & Michael E. Kupferman MD

  5. Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Susan K. Peterson PhD, MPH

  6. Department of Biostatistics, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Roland L. Bassett Jr. MS

Authors
  1. Minerva A. Romero Arenas MD, MPH
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  2. Thereasa A. Rich MS
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  3. Samuel M. Hyde MMSc
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  7. Robert F. Gagel MD
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  9. Camilo Jimenez MD
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  10. Michael E. Kupferman MD
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  11. Susan K. Peterson PhD, MPH
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  12. Steven I. Sherman MD
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  14. Roland L. Bassett Jr. MS
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  15. Steven G. Waguespack MD
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  16. Nancy D. Perrier MD
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  17. Elizabeth G. Grubbs MD, FACS
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Corresponding author

Correspondence to Elizabeth G. Grubbs MD, FACS.

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Romero Arenas, M.A., Rich, T.A., Hyde, S.M. et al. Recontacting Patients with Updated Genetic Testing Recommendations for Medullary Thyroid Carcinoma and Pheochromocytoma or Paraganglioma. Ann Surg Oncol 25, 1395–1402 (2018). https://doi.org/10.1245/s10434-018-6366-0

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  • DOI: https://doi.org/10.1245/s10434-018-6366-0

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