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Member Research & Reports

Member Research & Reports

Kentucky: Does a Disease Management Program Help AATD Patients?

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.

[Photo: (left to right) Mr. Jordan T. Perkins, Ms. Radmila Choate, Dr. David Mannino, and Dr. Steven R. Browning]

To help patients, families of patients, and health care providers navigate the wealth of information on AATD, AlphaNet, a not-for-profit organization, developed the Alpha-1 Disease Management and Prevention Program (ADMAPP). The program provides support as well as education on the disease. A large part of the educational component is devoted to prophylactic measures that individuals with AATD can take to help decrease risk of future disease complications. Specifically, preventive measures, such as smoking cessation, nutrition and exercise improvement, rapid recognition and treatment of exacerbations, identification and treatment of comorbid conditions, and immunization against influenza virus, hepatitis, and pneumonia, are emphasized in ADMAPP.

A team of researchers conducted a study to investigate the efficacy of ADMAPP in helping AATD patients manage their health their findings appear in Chronic Obstructive Pulmonary Diseases. Study authors are: Mr. Jordan T. Perkins with the University of Louisville, department of medicine, Ms. Radmila Choate, research analyst in the department of preventive medicine & environmental health, Dr. David Mannino, chair, department of occupational medicine and environmental health and Dr. Steven R. Browning associate professor in the department of epidemiology,  all affiliated with the University of Kentucky College of Public Health.

Data from questionnaires were obtained on 4,747 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.

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 and to be taking preventive measures such as smoking cessation, appropriate immunizations, and self-reported exercise.

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.