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Trends over 42 years in the Adult Medical Genetics Clinic at the University of Washington

Subjects

Abstract

Purpose

We analyzed the patients served by the University of Washington Adult Genetic Medicine Clinic (UWAGMC) over a 42-year period to determine how clinical services have changed and to evaluate the contributing factors.

Methods

We conducted a retrospective survey of patients seen by UWAGMC that included patients seen from 1975 to 2016. Variables considered included referral indication, disease status, and clinic visit date. Indications for referral were then binned into clinical categories for descriptive analysis.

Results

Of 30,780 patient visits during the 39 years for which data were available, 57.3% occurred in the last decade. Referrals for breast/ovarian cancer or colon/endometrial cancer account for 74.8% of cancer referrals since 1998. Huntington disease patients made up 46% of neurological referral indications. Telephone screening implemented in 2013 has reduced the number of referrals for hypermobile Ehlers–Danlos syndrome.

Conclusion

Referral indications increased with clinical testing availability and because of the academic programs of UWAGMC providers. With increased public awareness of heritable conditions, prescreening self-referrals were used to allocate limited resources. These trends demonstrate the need for more geneticists in adult medicine to expand centers of excellence for rare diseases and to serve the increasing numbers of adult patients with genetic conditions.

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References

  1. 1.

    The American Board of Medical Specialties. Cross-certification summary, 2017: diplomates currently certified by the ABMGG and other ABMS member boards. http://www.abmgg.org/pdf/ABMGG_CrossCertCounts_ActiveAlive_022072018.pdf. Accessed 1 January 2017.

  2. 2.

    Rimoin DL, Hirschorn H. A history of genetics in pediatrics. Pediatr Res. 2004;56:150–159.

  3. 3.

    Klitzman R, Chung W, Marder K, et al. Attitudes and practices among internists concerning genetic testing. J Genet Couns. 2013;22:90–100.

  4. 4.

    Bird TD, Hall JG. Clinical neurogenetics a survey of the relationship of medical genetics to clinical neurology. Neurology. 1977;27:1057–1060.

  5. 5.

    Eble TN, Nagamani SCS, Franco LM, Plon SE, Blazo M, Dhar SU. The practice of adult genetics: a 7-year experience from a single center. Am J Med Genet A. 2013;161:89–93.

  6. 6.

    U.S. National Library of Medicine, National Institutes of Health. FAQ about rare diseases. https://www.genome.gov/27531963/. Accessed 28 May 2018.

  7. 7.

    Cooksey JA, Forte G, Benkendorf J, Blitzer MG. The state of the medical geneticist workforce: findings of the 2003 survey of American Board of Medical Genetics certified geneticists. Genet Med. 2005;7:439–443.

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Acknowledgements

E.A.G. was supported by the ACMG Foundation Summer Scholars Program. We thank Elisabeth Rosenthal for assistance with Fig. 1. We thank Debbie Olson for assistance in obtaining the clinic schedules, and thank the many fellows, genetic counselors, nurses, and social workers, past and present, who contributed to the UWAGMC.

Author information

Disclosure

The authors declare no conflicts of interest.

Correspondence to Elizabeth A. Gay BS.

Electronic supplementary material

  1. Supplemental Table 1

  2. Supplemental legend

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Fig. 1
Fig. 2: Specific referral indications by category.