Summary of Changes to Data Collection

Attachment 13 – Summary of Changes

National HIV Behavioral Surveillance (NHBS) System Round 5 (2017-2020) Summary of Changes to Data Collection Instruments

1. Eligibility Screener, Attachments 3a & 4a (3 items added, 1 item modified):

• Added questions to assess county of residence in three newly funded project areas (ES5_MEM, ES5_NOR, ES5_PTL). All participants are asked their county of residence once. The set of response options varies based on the city in which the interview occurs. These changes are necessitated by the presence of new NHBS project areas, they do not effect participant burden.

• 1 question assessing attendance to MSM venues was updated to improve the quality of data based on prior experience during NHBS (0920-0770) (ES9).

2. Behavioral Assessment, Attachments 3b-d & 4b-d (32 items added, 38 items deleted, 17 items modified, 14 items moved):

• Emerging priorities in HIV prevention - The HIV prevention landscape has changed significantly in recent years with increased emphasis on Pre-Exposure Prophylaxis (PrEP) and treatment as prevention, and the growing US opioid epidemic. The following changes were necessary to ensure NHBS continues to collect the most relevant HIV-associated behavioral data:

  • Measuring use of Pre-Exposure Prophylaxis (PrEP)

    • 6 questions added to measure PrEP (regular or episodic) and source of PrEP (PA6d – PA6i);

    • 2 questions (PA5, PA6a) and 1 introduction statement (INTRO_PA5) were modified to reduce text and improve clarity based on lessons learned from previous NHBS cycles.

  • Treatment as prevention

    • 6 questions (SX50c, SX50d, SX61c, SX61d, SX72c, SX72d) were added for HIV-negative participants reporting sex with an HIV-positive partner to assess if the partner was on HIV treatment.

  • Opioid epidemic

    • 4 questions (ID1b, TX3, TX4, TX5) and 1 introduction statement (INTRO_TX3) were added to measure addiction to opioids prior to first drug injection, use of medication assisted drug treatment (MAT), unmet need for MAT, and opioid overdose.

• Deletion of lower priority items – Every item in each Behavioral Assessment was reviewed for quality and content value. Items measuring repetitive or low priority content were removed from the assessment.

  • 9 questions (SX8, SX8a, SX8b, SX16, SX16a, SX16b, SX24, SX24a, SX24b) were deleted that assessed whether participants had any unprotected sex in the past 12 months with persons of positive, negative, or unknown HIV-status. Similar information is collected for the participant’s 3 most recent sex partners in the instrument. Further, these questions proved difficult for participants to answer.

  • 21 questions were determined to yield low priority data or data with insufficient variability to conduct meaningful analysis.

    • DM3b2, DM3b2spec – specific language spoken at home, if not English

    • DM7b – number of dependents under 18 years old

    • ID1b.dmyConf – confirmation of date of last injection

    • ID4a – overall frequency of injection

    • ID18 – use of sterile needle at last injection

    • HT7e, HT7e1, HT7f – negative HIV tests before first positive test

    • HT8a, HT8a1, HT8c, HT8c1, HT8e, HT8e1, HT9a, HT9a1 – main reason participant is not linked to or engaged in various levels of HIV care and treatment

    • PA9, PA10 – perpetrator of violence against a partner

    • PA4a – location of HIV prevention intervention

    • PA6 – perceived risk of contracting HIV

• Measurement improvements – Modifications were made to items with potential to yield higher quality or more directly relevant data based on lessons learned from previous NHBS data collections and analyses.

  • 2 questions (SX73a, SX73b) assessing sterilizing operations, such as a hysterectomy, were added to start the section assessing use of hormonal contraception. Participants reporting a previous sterilizing operation will not be asked about use of hormonal contraception.

  • 1 question (PA4) assessing participation in any individual- or group-level HIV prevention interventions was too complicated and confusing for participants to answer. The original question was deleted and replaced by 2 questions (PA4a, PA4b): PA4a assesses participation in individual-level interventions; PA4b assesses participation in group-level interventions.

  • 3 questions (SX32, SX52, SX63) assessing categorical ages of participant’s last 3 partners were replaced with 6 questions (SX32a, SX32b, SX52a, SX52b, SX63a, SX63b) that better measure partner age as it relates to HIV risk.

  • 5 questions (ID6, PA2, PA2a, PA3, PA3a) assessing where participants obtained their injection equipment were replaced with 4 questions (PA2a, PA2b, PA3a, PA3b) which assess the same content in a more efficient way.

• Clarity, repetitive language, and interview flow - Based on a review of all items in the Behavioral Assessments, the wording of 17 items was changed to improve clarity or remove unnecessarily repetitive language. An additional 14 items were moved to improve interview flow. These changes do not effect the scope or content of the questions; they also do not effect the time burden of NHBS to participants. However, they are intended to improve the overall participant experience and the quality of data by improving clarity and flow of the interview process.

  • 10 Questions modified: SX1, SX19conf, AL1, ID1b.num, ID7, ID26, ND2D, ND2H, HC2b, HC6

  • 4 Introductory statements modified: INTRO_SX74a, INTRO_ID17, INTRO_JT1, INTRO_PA7

  • Questions moved to improve interview flow:

    • 6 HHS required questions measuring disability (DM9a-DM9f)

    • 7 questions measuring hormonal contraception (SX74a-SX74g)

    • 1 question measuring number of female sex partners of women (SX75)