PMID- 28848911 OWN - NLM STAT- PubMed-not-MEDLINE LR - 20200929 IS - 2372-952X (Print) IS - 2372-952X (Electronic) IS - 2372-952X (Linking) VI - 4 IP - 1 DP - 2016 Dec 24 TI - Benefits Among Patients with Alpha-1 Antitrypsin Deficiency Enrolled in a Disease Management and Prevention Program. PG - 56-64 LID - 10.15326/jcopdf.4.1.2016.0161 [doi] AB - Rationale: Alpha-1 antitrypsin deficiency (AATD) is characterized by decreased circulating levels or activity of the serum protein, alpha-1 antitrypsin, which increases risk for chronic lung or liver injury and may lead to diseases such as chronic obstructive pulmonary disease (COPD). Currently there is no cure for AATD, and it is largely controlled through disease management and augmentation therapy. This study was designed to describe characteristics of patients enrolled in a disease management and prevention program. Methods: Data from questionnaires administered by AlphaNet were obtained on 4747 AATD patients and included demographic information, medical history, lifestyle choices, and adherence to the Alpha-1 Disease Management and Prevention Program (ADMAPP). A total of 1221 participants (25.72%) had missing adherence information and were excluded, leaving a final study population of 3526. Questionnaire answer dates ranged from May 29, 2008 to February 14, 2015. Logistic regression was used to adjust for demographic factors and comorbidities, comparing the populations stratified by adherence to ADMAPP. Results: After adjustment for age, sex, race, Charlson Comorbidity Index, and income level, individuals who self-reported any adherence to ADMAPP were more likely to feel informed about their condition (odds ratio[OR](adj) 4.95, 95% confidence interval[CI][3.24, 7.57]), and be taking preventive measures, such as smoking cessation (OR(adj) 0.47, 95% CI [0.31, 0.70]), appropriate immunizations, and self-reported exercise (OR(adj) 2.07, 95% CI [1.74, 2.47]). Conclusions: This study suggests that ADMAPP may be a useful tool for informing and improving preventive measures taken by individuals with AATD. Future studies are needed to clarify the observed associations and study additional outcomes. FAU - Perkins, Jordan T AU - Perkins JT AD - Department of Preventive Medicine and Environmental Health, University of Kentucky College of Public Health, Lexington. FAU - Choate, Radmila AU - Choate R AD - Department of Preventive Medicine and Environmental Health, University of Kentucky College of Public Health, Lexington. FAU - Mannino, David M AU - Mannino DM AD - Department of Preventive Medicine and Environmental Health, University of Kentucky College of Public Health, Lexington. AD - Department of Epidemiology, University of Kentucky College of Public Health, Lexington. FAU - Browning, Stephen R AU - Browning SR AD - Department of Epidemiology, University of Kentucky College of Public Health, Lexington. FAU - Sandhaus, Robert A AU - Sandhaus RA AD - Division of Pulmonary, Critical Care and Sleep Medicine, National Jewish Health, Denver, Colorado. LA - eng PT - Journal Article DEP - 20161224 PL - United States TA - Chronic Obstr Pulm Dis JT - Chronic obstructive pulmonary diseases (Miami, Fla.) JID - 101635411 PMC - PMC5560250 OTO - NOTNLM OT - AATD OT - alpha-1 antitrypsin deficiency OT - chronic obstructive pulmonary disease OT - copd COIS- DM has received honoraria/consulting fees and served on speaker bureaus for GlaxoSmithKline PLC, Novartis Pharmaceuticals, Pfizer Inc., Boehringer-Ingelheim, AstraZeneca PLC, Forest Laboratories Inc., Merck, Amgen, and Sunovion. Furthermore, he has received royalties from Up-to-Date, is on the Board of Directors of the COPD Foundation, and has been compensated as a medical expert in legal cases. JTP, RC, and SRB report no conflicts of interest. RAS has received research funding from Grifols, CSL Behring, AstraZeneca, and the National Institutes of Health/National Heart Lung and Blood Institute. He has served as an advisor or consultant for Grifols, CSL Behring, Baxter, AstraZeneca, and Alnylam. He is on the Board of Directors of AlphaNet and a member of the Medical and Scientific Advisory Committee of the COPD Foundation and is the medical director of the Alpha-1 Foundation and AlphaNet. EDAT- 2017/08/30 06:00 MHDA- 2017/08/30 06:01 PMCR- 2016/12/24 CRDT- 2017/08/30 06:00 PHST- 2017/08/30 06:00 [entrez] PHST- 2017/08/30 06:00 [pubmed] PHST- 2017/08/30 06:01 [medline] PHST- 2016/12/24 00:00 [pmc-release] AID - 10.15326/jcopdf.4.1.2016.0161 [doi] PST - epublish SO - Chronic Obstr Pulm Dis. 2016 Dec 24;4(1):56-64. doi: 10.15326/jcopdf.4.1.2016.0161.