Estimating Unmet Need: Frequently Asked Questions (FAQs)

Author(s): Abt AssociatesHRSA HIV/AIDS Bureau (HAB)

Quick answers to common questions about Unmet Need, the calculation used to measure the “need for HIV-related health services by individuals with HIV who are aware of their HIV status, but are not receiving regular primary [HIV] health care.”

 

Updated Unmet Need Methodology Overview

In the years since the original Unmet Need methodology was put in place, the treatment of HIV disease has changed significantly due to the effectiveness of antiretroviral treatment (ART).  In addition, the availability and quality of data used to estimate unmet need have improved. Given this, HRSA HAB began exploring ways to more effectively estimate unmet need—meeting both the legislative requirements and providing a better tool that jurisdictions can use to identify needs and develop interventions in response to those needs.

  • The original methodology differentiated between HIV non-AIDS and AIDS whereas now we use people living with diagnosed HIV infection.  This aligns with changes in how HIV surveillance data are presented. 
  • The new methodology uses a 5-year recent cohort for population size rather than all people living with diagnosed HIV. This 5-year cohort is defined using HIV surveillance data as the number of people living with diagnosed HIV infection in the jurisdiction based on most recent known address who had an HIV diagnosis or any other HIV-related lab data (e.g., CD4, VL, genotype, or HIV test even if already diagnosed) reported to the HIV surveillance program during the most recent five calendar year period. This makes it more likely that individuals who have moved or died are not included in the estimate.
  • Most of the components of the new methodology use the most recent known address for the person rather than address at diagnosis.  This is consistent with broader changes in how data are presented by Centers for Disease Control and Prevention (CDC) and better reflects where people are now than when they were diagnosed.
  • Added estimates for Late Diagnoses and In Care, Not Virally Suppressed to the new methodology.
  • The definition for "In Care" in the estimates includes CD4 and Viral Load tests, but NOT antiretroviral prescriptions, as prescription data are not available in the HIV surveillance data.
  • There are required and enhanced estimates.  Required elements must be completed by all, but jurisdictions can also choose to do any or all of the additional enhanced estimates (see question below on differences between required and enhanced).

Unmet Need Definitions and Terms

Unmet Need is "the need for HIV-related health services by individuals with HIV who are aware of their HIV status, but are not receiving regular primary [HIV] health care".  (REF: Mosaica, "HRSA/HAB Definitions Relate to Needs Assessment," prepared for the Division of Service Systems, HIV/AIDS Bureau by Mosaica: The Center for Nonprofit Development and Pluralism, June 10, 2002.)

Yes, there is a difference. Unmet need is a component of the overall planning activities a recipient engages in to address the needs clients have in the jurisdiction. The needs assessment is the main driver for the priority setting and resource allocation activities in Ryan White jurisdictions. Based upon needs assessment results, recipients (and Planning Councils/Bodies in RWHAP Part A programs) must set priorities and allocate resources to meet these needs. Based on needs assessment, utilization of services, and epidemiologic data—recipients (and Planning Councils/Bodies in RWHAP Part A programs) decide what services are most needed by people living with HIV in the EMA or TGA (priority setting) and decides how much RWHAP funding should be used for each of these service categories (resource allocations).

  • New Diagnoses are people in the jurisdiction with HIV diagnosed in the most recent calendar year based on residence at time of diagnosis.  Late Diagnoses are a subset of all new diagnoses and represent people with new diagnoses whose first CD4 test result was <200 cells/mL (or a CD4 percentage of total lymphocytes of <1) or had documentation of an AIDS-defining condition ≤3 months after a diagnosis of HIV infection.  If ≥2 events occurred during the same month and could thus qualify as "first," apply the same conditions applied by CDC's Division of HIV/AIDS Prevention HIV Incidence and Case Surveillance Branch (DHAP HICSB).
  • More information on the methodology is available in the Methodology for Estimating Unmet Need Instruction Manual.

Jurisdictions are asked to use the most recent calendar year for which data are available. This means that a jurisdiction should have cleaned and reviewed the data and determined them to be complete, accurate and ready for release. This will vary by jurisdiction and should be assessed at the time that the estimates and analyses are being prepared.

Preparing for the Unmet Need Estimates and Analyses

While the actual estimates are not due until the application submission, preparation for unmet need should start as soon as is feasible. This will ensure that you have adequate time to contact and work with your HIV surveillance program and determine which approach you are using for unmet need (required or enhanced). Recipients are encouraged to develop a Preparation Plan to help them plan for completing the Unmet Need estimates and analyses.

The Abt team presented Unmet Need on a CDC HIV surveillance call in January, so the surveillance contacts should be aware of this requirement. RWHAP staff should start working with HIV surveillance staff in their jurisdictions as early as possible to identify who will be responsible for running the estimates and analyses and ensure there is adequate time to complete the work.

Tools for Completing Unmet Need Estimates and Analyses

The SAS program (analytic software) was developed by the CDC's Division of HIV/AIDS Prevention HIV Incidence and Case Surveillance Branch (DHAP HICSB) to help jurisdictions analyze their HIV surveillance data, but recipients do not have to use it.

The SAS program developed by CDC's Division of HIV/AIDS Prevention HIV Incidence and Case Surveillance Branch (DHAP HICSB) is available to the HIV surveillance staff in each jurisdiction and will be distributed to those contacts via their listserv.

The SAS code should be available by March 2021. It will be distributed by CDC to the HIV Surveillance contacts in each jurisdiction.

Completing the Unmet Need Estimates and Analyses

Recipients may use breakdowns that are most useful locally, which may include demographics such as race and age and geographic areas such as counties or health districts. It is recommended the breakdowns for the RWHAP data be the same as those for HIV surveillance data if at all possible. The SAS program from CDC will run the estimates using the categories in the Optional Calculation Tables, except for Health Planning Area and Priority Population, which are determined by the jurisdiction.

HAB understands that COVID-19 may have impacted lab reporting. RWHAP recipients should use the most recent complete data that is available, which will be determined by the HIV surveillance team.

  • HRSA HAB encourages recipients to complete as much of the enhanced estimates and analyses as is possible.
  • Only the required estimates and analyses must be completed; any additional analyses are optional.

HRSA HAB and CDC strongly encourage data sharing between HIV surveillance and the RWHAP in jurisdictions. As a reminder, linked databases are not used for the required Unmet Need estimates and analyses, only for the enhanced estimates and analyses.

The selection of priority populations should be data driven. Specifically, data from the needs assessment, service utilization, and other component of your program (e.g., HIV Care Continuum, EIIHA strategy, Unmet Need data) should be used to make determinations on the selection of priority populations to focus on. To the extent possible, the activities to support selected priority populations should reflect the demonstrated need in the reflected in the different components of the application (e.g., unmet need, EIIHA).

Submitting the Unmet Need Estimates and Analyses

HRSA HAB has developed Required Reporting Templates for recipients to use to submit Unmet Need Estimates and analysis.  Recipients will also need to include narrative responses specific to unmet need in their applications based on questions in the Notice of Funding Opportunity (NOFO).  Recipients may also submit the Optional Calculation tables but this is not mandatory.  Additional information can be found in the RWHAP Parts Part A and B NOFOs.

HRSA HAB is implementing the new unmet need requirement in the FY 2022 Notice of Funding Opportunity (NOFO). As such, all RWHAP Parts A and B recipients will be required to submit unmet need estimates and analyses in their FY 2022 applications.

Yes, recipients will be able to describe limitations in reporting Unmet Need estimates in the application.

Unmet Need Estimates and Analyses will need to be completed in time for inclusion in your jurisdiction’s response to the NOFO. The NOFOs are anticipated to be released late summer 2021.

  • The required estimates utilize HIV surveillance data for Late Diagnoses, Unmet Need, and In Care Not Virally Suppressed totals as well as Target Populations.  These estimates and analyses must be submitted to HAB.
  • The enhanced estimates include the required estimates plus additional estimates and analyses for RWHAP clients using RWHAP data as well as additional subpopulation analyses for both RWHAP and HIV surveillance data.  The enhanced estimates also utilize linked databases. The enhanced estimates and analyses are not required to be submitted to HRSA HAB, but jurisdictions who have the capacity are encouraged to complete them.

Technical Assistance

Training and technical assistance (TA) are available to HRSA HAB staff, RWHAP Parts A and B recipients, and state and local HIV surveillance staff by members of the Unmet Need Training and TA Team.  Potential topics can include collection and use of data for estimating unmet need as well as conducting subpopulation analyses by key characteristics (e.g., age, gender, race/ethnicity, transmission risk category) and using the estimates for planning purposes.

Assistance is available via email or phone consultations, webinars, staff trainings, or through the provision of resource materials.  Email requests for assistance to members of the Unmet Need Training and TA Team. A response will be sent within 48 hours of the request.

Email requests for assistance to the Abt Unmet Need Training and TA Team: https://targethiv.org/ta-org/estimating-unmet-need-training-and-ta-team. A response will be sent within 48 hours of the request.

Technical Assistance from the Abt team is available through May 31, 2021. After May 2021, technical assistance is available through your HRSA HAB Project Officer.

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