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Integrated Guidance for Developing Epidemiologic Profiles – HIV Prevention and Ryan White HIV/AIDS Programs Planning, 2014

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Integrated Guidance for Developing Epidemiologic Profiles – HIV Prevention and Ryan White HIV/AIDS Programs Planning, 2014 Integrated Guidance for Developing Epidemiologic Profiles HIV Prevention and Ryan White HIV/AIDS Programs Planning August 2014 All material contained in this document is in the public domain and may be used and copied without permission; citation of the source is, however, appreciated. Suggested citation Centers for Disease Control and Prevention and Health Resources and Services Administration. Integrated Guidance for Developing Epidemiologic Profiles: HIV Prevention and Ryan White HIV/AIDS Programs Planning. Atlanta, Georgia: Centers for Disease Control and Prevention; 2014. The guidance is available at http://www.cdc.gov/hiv/guidelines/ and at http://hab.hrsa.gov/. Page 2 of 132—8/25/2014 Contents Contents Contributors ................................................................................................................................ 5 Abbreviations .............................................................................................................................. 6 Executive Summary .................................................................................................................... 7 Chapter 1: Introduction .............................................................................................................. 9 Overview ................................................................................................................................. 10 Goals and Benefits of Integrated Guidance............................................................................. 11 Core Concepts ........................................................................................................................ 12 Chapter 2: Starting the Process .............................................................................................. 14 Determining the Scope ............................................................................................................ 15 Determining the Content and Organization of the Profile ........................................................ 17 Development Process ............................................................................................................. 19 Obtaining Profile Data ............................................................................................................. 20 Analysis and Interpretation ...................................................................................................... 28 Chapter 3: Describing the Burden of HIV ............................................................................... 32 Core Epidemiologic Questions ................................................................................................ 34 Special Questions and Considerations for Ryan White HIV/AIDS Program Grantees ............ 54 Chapter 4: Completing the Epidemiologic Profile ................................................................. 60 Making Your Profile User-Friendly........................................................................................... 61 Writing Your Narrative ............................................................................................................. 64 Disseminating Your Profile ...................................................................................................... 69 Chapter 5: Special Considerations ......................................................................................... 71 Confidentiality .......................................................................................................................... 72 Special-Needs Populations ..................................................................................................... 74 Comorbidity ............................................................................................................................. 75 Areas with Low Morbidity and Minimal Data ............................................................................ 76 Page 3 of 132—8/25/2014 Contents Appendices ................................................................................................................................ 77 A. Sample Data Tables and Charts with Interpretation Associated with Chapter 3 ....... 78 B. Use of Tables, Charts, and Maps to Illustrate Data....................................................... 83 C. Data Sources .................................................................................................................... 90 D. Ryan White HIV/AIDS Programs ................................................................................... 114 E. Preparing Oral Presentations of Your Profile .............................................................. 117 F. Epidemiologic Profile Feedback Form for Planning Groups ..................................... 121 G. Terms, Definitions, and Calculations ........................................................................... 123 References and Suggested Readings ................................................................................... 131 Page 4 of 132—8/25/2014 Contributors Contributors The original guidance was developed by the Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA) Community Risk Profile Work Group with assistance from state, territorial, and local health departments and the Academy for Educational Development. Hazel Dean, CDC, and Celia Hayes, HRSA, led the development of the guidance. Members of the CDC/HRSA work group that worked on the current document, updating the original guidance: CDC/HRSA Representatives: William Adih, Deanna Campbell, Michael Campsmith, Sherene Cora, Gregory Fant, John Gerstle, Janet Heitgerd, Avena Jackson, Anna Satcher Johnson, Stan Lehman, Laurie Linley, June Mayfield, Diana Palow, Kathleen Treat, Melanie Wieland State and Local Health Representatives: Delaware: Jim Dowling; District of Columbia: Khalid Kheirallah; Connecticut: Aaron Roome; Indiana: Daniel Hilman; Louisiana: Jessica Fridge; Massachusetts: Maile Beatty; Minnesota: Glenise Johnson; Missouri: Karin Bosh; Oregon: Jeff Capizzi; Tennessee: Tom Shavor; Virginia: Ashley Carter Page 5 of 132—8/25/2014 Abbreviations Abbreviations ADAP AIDS Drug Assistance Program AIDS acquired immunodeficiency syndrome BRFSS Behavioral Risk Factor Surveillance System CDC Centers for Disease Control and Prevention DAWN Drug Abuse Warning Network DHAP Division of HIV/AIDS Prevention (CDC) DRP Dental Reimbursement Program eHARS enhanced HIV/AIDS Reporting System EMA eligible metropolitan area GISP Gonococcal Isolate Surveillance Project HAART highly active antiretroviral therapy HIV human immunodeficiency virus HOPS Hospital Outpatient Study HRSA Health Resources and Services Administration ICD International Classification of Diseases IDU injection drug user MMP Medical Monitoring Project MSM gay, bisexual, and other men who have sex with men NCHHSTP National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (CDC) NHBS National HIV Behavioral Surveillance System NHIS National Health Interview Survey NHSDA National Household Survey of Drug Abuse NIDA National Institute on Drug Abuse NIR no identified risk NNIP National Neighborhood Indicator Project OMB Office of Management and Budget PLWA people living with AIDS PLWH people living with HIV PRAMS Pregnancy Risk Assessment Monitoring System RSR Ryan White HIV/AIDS Program Services Report SAMHSA Substance Abuse and Mental Health Services Administration SPNS Special Projects of National Significance SSVRS Sentinel Surveillance of Variant and Drug-Resistant Strains STD sexually transmitted disease TB tuberculosis TGA transitional grant area YRBSS Youth Risk Behavioral Surveillance System Page 6 of 132—8/25/2014 Executive Summary Executive Summary This guidance has been developed by the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) to assist persons who compile and interpret HIV prevention and care data for state, territorial, or local HIV epidemiologic profiles. The purpose of the document is to provide one set of guidance to help profile writers produce integrated epidemiologic profiles and advise them concerning how to interpret epidemiologic data in ways that are consistent and useful in meeting the planning and evaluation needs of both HIV prevention and care programs. Integrating prevention and care data should help to streamline the work of health department staff, HIV planning groups, and planning councils by reducing duplicated effort and by promoting consistency and comparability of data and terms in prevention as well as care planning. The guidelines are written in 5 chapters that (1) provide an overview of integrated HIV epidemiologic profiles, (2) outline what writers need to do to start creating a comprehensive profile, (3) address how to describe the burden of HIV in a jurisdiction, (4) describe the process of completing the profile, and (5) address special issues that may arise during the writing of the profile. Each chapter is organized into sections. Specific data and elements to meet the requirements of CDC and of HRSA are also addressed. Highlights of each chapter are as follows: • Chapter 1 o Describes the purpose of the guidelines, identifies the audience for the document, and outlines what end users will learn • Chapter 2 o Describes 3 core epidemiologic questions and 2 care-related questions that help to describe the burden of HIV in a jurisdiction and suggests analyses that may be used to answer
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