TY - JOUR
T1 - Use of electronic health records to characterize a rare disease in the U.S.
T2 - Treatment, comorbidities, and follow-up trends among patients with a confirmed diagnosis of acromegaly
AU - Silverstein, Julie M.
AU - Roe, Erin D.
AU - Munir, Kashif M.
AU - Fox, Janet L.
AU - Emir, Birol
AU - Kouznetsova, Maria
AU - Lamerato, Lois E.
AU - King, Donna
N1 - Funding Information:
This study was funded by Pfizer Inc. J.M.S. and K.M.M. have received consulting fees from Pfizer. B.E. is an employee of Pfizer, and J.L.F. and D.K. were employees of Pfizer during the study and manuscript development. E.D.R., M.K., and L.E.L. have no multiplicity of interest to disclose. All procedures performed were in accordance with the ethical standards of the institutional research committees. No external authors were paid for writing the manuscript.
Publisher Copyright:
Copyright © 2018 AACE.
PY - 2018/6
Y1 - 2018/6
N2 - Objective: Understanding of acromegaly disease management is hampered in the U.S. by the lack of a national registry. We describe medical management in a population with confirmed acromegaly. Methods: Inpatient and outpatient electronic health records (EHRs) were used to create a database of de-identified patients assigned the Acromegaly and Gigantism International Classification of Diseases, 9th revision (ICD-9) code and/or an appropriate pituitary procedure code at 1 of 4 regional hospital systems over a 6- to 11-year period. Information regarding demographics, medical history, labs, procedures, and medications was collected and supplemented with a chart review to validate the diagnosis of acromegaly. Results: Of 367 patients with validated acromegaly, available records showed that during the years studied, pituitary surgery was performed on 31%, 4% received radiosurgery, and 22% were prescribed a drug indicated for acromegaly. Insulin-like growth factor-1 (IGF-1) levels were measured in 62% of patients, 83% of whom had at least 1 normal value. Coded comorbidities reflect those reported previously in patients with acromegaly, with the exception of esophageal reflux in 20% of patient records. Fewer data regarding acromegaly-specific medications and testing were available for patients aged 65 and older. Conclusion: AcroMEDIC is a U.S. multisite retrospective study of acromegaly that captured medical management in the majority of patients included in the cohort. Chart review highlighted the importance of verification of coded diagnoses. Most of the acromegaly-related comorbidities identified here are known to increase with age and obesity. Patients ≥65 appeared to have less active management/monitoring of their disease. Medical attention should be directed to this population to address evolving needs over time.
AB - Objective: Understanding of acromegaly disease management is hampered in the U.S. by the lack of a national registry. We describe medical management in a population with confirmed acromegaly. Methods: Inpatient and outpatient electronic health records (EHRs) were used to create a database of de-identified patients assigned the Acromegaly and Gigantism International Classification of Diseases, 9th revision (ICD-9) code and/or an appropriate pituitary procedure code at 1 of 4 regional hospital systems over a 6- to 11-year period. Information regarding demographics, medical history, labs, procedures, and medications was collected and supplemented with a chart review to validate the diagnosis of acromegaly. Results: Of 367 patients with validated acromegaly, available records showed that during the years studied, pituitary surgery was performed on 31%, 4% received radiosurgery, and 22% were prescribed a drug indicated for acromegaly. Insulin-like growth factor-1 (IGF-1) levels were measured in 62% of patients, 83% of whom had at least 1 normal value. Coded comorbidities reflect those reported previously in patients with acromegaly, with the exception of esophageal reflux in 20% of patient records. Fewer data regarding acromegaly-specific medications and testing were available for patients aged 65 and older. Conclusion: AcroMEDIC is a U.S. multisite retrospective study of acromegaly that captured medical management in the majority of patients included in the cohort. Chart review highlighted the importance of verification of coded diagnoses. Most of the acromegaly-related comorbidities identified here are known to increase with age and obesity. Patients ≥65 appeared to have less active management/monitoring of their disease. Medical attention should be directed to this population to address evolving needs over time.
UR - http://www.scopus.com/inward/record.url?scp=85049258459&partnerID=8YFLogxK
U2 - 10.4158/EP-2017-0243
DO - 10.4158/EP-2017-0243
M3 - Article
C2 - 29624099
AN - SCOPUS:85049258459
SN - 1530-891X
VL - 24
SP - 517
EP - 526
JO - Endocrine Practice
JF - Endocrine Practice
IS - 6
ER -