ADMAPP: Alpha-1 Disease Management and Prevention Program


AlphaNet, Inc. was founded in 1995 with a mission to provide disease management to persons with Alpha-1 antitrypsin deficiency (Alpha-1). Currently, AlphaNet follows nearly 2,700 Alpha-1 patients and employs 23 regional AlphaNet Coordinators, all individuals with Alpha-1. Our disease management program is comprehensive and structured to meet the specific needs of persons diagnosed with Alpha-1 antitrypsin deficiency. The program is built on clinical and organizational principles that have emerged from the relatively new field of disease management.

The Alpha-1 Disease Management and Prevention Program or ADMAPP was developed by AlphaNet to support not only the individual Alpha but also their families and health care providers. We define ADMAPP as an integrated system of education, interventions, measurements and refinements of health care delivery designed to optimize clinical and economic outcomes for persons with Alpha-1. The goal is to prevent disease, improve the quality of life and efficiently manage health resources for individuals with Alpha-1.

Big Fat Reference Guide

ADMAPP is composed of several interrelated components. The first of these and the cornerstone of the program is the “Big Fat Reference Guide.” It is intended as a guide to persons with Alpha-1 and their health care providers in understanding and managing their health. The information presented in the BFRG is based on published scientific evidence and sound clinical practice. It is consistent with the Global Initiative on Chronic Obstructive Lung Disease (GOLD) guidelines and the “Standards for the Diagnosis and Management of Individuals with Alpha-1 Antitrypsin Deficiency,” recently published by the American Thoracic Society and European Respiratory Society. It is a collaborative document written by experts across a broad spectrum of disciplines. These include physicians, nurses, pharmacists, nutritionists, psychologists, social workers, rehabilitation professionals, respiratory therapists, insurance and reimbursement experts, and patients. The Reference Guide’s content includes:

• Understanding Alpha-1
• Information for All Individuals with Alpha-1
• Information for Healthy Alphas
• Management of Alpha-1 Lung Disease
• Management of Alpha-1 Liver Disease
• Other Medical Conditions Associated with Alpha-1
• Organ Transplantation in Alpha-1
• 6 Appendices
• Additional Information for Patients
• Additional Information for Health Care Providers
• Checklists and Worksheets
• Treatment Plans and Assessment Tools
• Glossary of Terms
• Index


The effectiveness of the ADMAPP is being evaluated through the second component of the program, a comprehensive outcome study. The current research study is approved by the IRB at the University of Miami. It is designed as a 24-month study and began enrollment on January 1, 2003. The study includes an initial baseline set of questionnaires: one developed by AlphaNet and two standardized, validated questionnaires — the SF 36 and the St. George’s Respiratory Questionnaire. Monthly follow-up questionnaires are administered. This study is currently following more than 1,000 persons with Alpha-1.


The third component of the ADMAP Program is its unique telemonitoring system. This system forms the foundation for the disease management of Alphas under AlphaNet’s care. The AlphaNet Coordinator is, indeed, the heart and soul of the operational structure of AlphaNet. All of our AlphaNet Coordinators are persons with Alpha-1, not medical professionals. As such, our AlphaNet Coordinators live our motto, “Alphas serving Alphas.” Individuals enrolled with AlphaNet are assigned to a specific AlphaNet Coordinator based upon geographical location. Their assigned AlphaNet Coordinator then contacts each enrollee at least monthly via telephone. In this way, they function as AlphaNet’s “frontline” for support, education, customer service, and collaborative self-management of the AlphaNet enrollees. As a formal component of ADMAPP, the AlphaNet Coordinators completed a comprehensive ADMAPP staff development program. The results of this educational effort were measured using pre-program test scores compared with post-program test scores. Additionally, AlphaNet Coordinators are educated in each of the research initiatives in which AlphaNet participates and are frequently the primary interface with the patients in these studies.


The fourth component of the Program is Professional Education. Specifically, a national educational program for nurses, approved for credits for Continuing Nursing Education. This program provides a certification course for nurses currently infusing Alpha-1 patients with augmentation therapy. A program worth three continuing medical education (CME) credits for physicians and respiratory therapists is also available.

Treatment Planning & Review

Component five is the process of treatment planning and review. This occurs between the medical team at AlphaNet and the health care providers of participants enrolled in the ADMAP Program. This process involves asking the participating physicians to send a copy of the patient’s treatment plan to AlphaNet for review. The medical team at AlphaNet then works with the physician to ensure that the treatment plan meets the Standard of Care for Alpha-1. Support and resources are made available to the many physicians whose clinical practice includes limited experience with Alpha-1. Emphasis is on securing the physician’s participation, encouraging adherence to guidelines and decreasing the significant variations in care for the Alpha-1 patient.


Program guidance, development and oversight is provided via the final component, the Disease Management Advisory Committee (DMAC), made up of international experts in a variety of disease management disciplines.

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