For Populations At Risk For HIV
Global HIV Strategic Information Working Group
Biobehavioural
Survey Guidelines
For Populations At Risk For HIV
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WHO, CDC, UNAIDS, FHI 360. Biobehavioral survey guidelines for Populations at Risk for HIV. Geneva: World Health Organization; 2017. Licence: CC BY-NC-SA 3.0 IGO.
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WHO be liable for damages arising from its use. Switzerland Printed inISBN: 978-92-4-151301-2 Authors Authorship and acknowledgements Abu Abdul-Quader, Mark Berry, Trista Bingham, Janet Burnett, Maxia Dong, Amy Drake, Avi Hakim, Wolfgang Hladik, Angele Marandet, Anne McIntyre, Chris Murrill, Joyce Neal and Nita Patel of the US Centers for Disease Control and Prevention (CDC); Rajatashuvra Adhikary (formerly of FHI 360); Tobi Saidel of Partnership for Epidemic Analysis (PEMA) Partners; and Angela Kelly-Hanku of the University of New South Wales and of the Papua New Guinea Institute of Editors Medical Research. Abu Abdul-Quader, Mark Berry, Trista Bingham, Janet Burnett, Dana Dolan, Maxia Dong, Amy Drake, Avi Hakim, Wolfgang Hladik, Angele Marandet, Anne
McIntyre, Chris Murrill, Joyce Neal and Nita Patel of CDC; Rajatashuvra Adhikary (formerly of FHI 360), Johannes van Dam and Steve Mills of FHI 360; staff of the
Joint United Nations Programme on HIV/AIDS (UNAIDS); Jesus Garcia Calleja of WHO; Thomas Rehle of the Human Sciences Research Council (HSRC); Tobi Saidel
Reviewers of PEMA Partners; and Ted Alcorn of the Bill & Melinda Gates Foundation.Maxia Dong, Shahul Ebrahim, Avi Hakim, Wolfgang Hladik, Amy Herman-Roloff, Andrea Kim, Rachel Kwezi, Sheryl Lyss, John Macom, Chris Murrill, Patrick Nadol,
Sanny Chen Northbrook, Bharat Parekh, Nita Patel, Dimitri Prybylski, Ray Shiraishi and Peter Young of CDC; Rajatashuvra Adhikary (formerly of FHI 360), Timothy
Mastro, Mike Merrigan, Steve Mills and Johannes van Dam of FHI 360; staff of UNAIDS; Jesus Garcia Calleja of WHO; Thomas Rehle: HSRC and University of Cape
Town; Tobi Saidel of PEMA Partners; and Angela Kelly-Hanku of the Kirby Institute, University of New South Wales, and Sexual and Reproductive Health Unit, We would like to thank the individuals who contributed to this document: Papua New Guinea Institute of Medical Research.Ashley Burson and Laura Porter of CDC; Helen Coelho, Amanda Geller, Seseni Nu, Betty Treschitta and Almeta West of ICF International, Vanessa Brown of the
Office of the US Global AIDS Coordinator; Maria Au, and Tisha Wheeler of the United States Agency for International Development (USAID), and Emily Crawford
(formerly with USAID) The findings, conclusions and recommendations in this report do not necessarily represent the official position of the CDC. Funding to support this work is from the United States President’s Emergency Plan for AIDS Relief (PEPFAR) and the Bill & Melinda Gates Foundation.Foreword
To address a public health problem, you first have to The authors of these guidelines considered key measure it accurately. Biobehavioural surveys have aspects of surveys, from survey planning, design, proven to be invaluable tools for measuring and data collection, analysis, presentation of results and addressing HIV, which remains the world’s biggest dissemination of reports to data use. These guidelines public health challenge. This current iteration of the are a must-have for anyone planning to conduct
Biobehavioural survey guidelines
is a welcome addition surveillance, whether experienced or not. It is our hope to the list of useful documents targeting those who that the guidelines will help to refine measurement of plan to conduct biobehavioural surveys of HIV and HIV and help countries to address the unmet needs HIV-risk behaviours in their countries. The guidelines of their communities, to further reduce the toll of can be applied across different countries, and to this the epidemic. end the document provides questionnaire modules that can be adapted to various contexts. The guidelines are
Olive Shisana
presented in a logical and coherent manner, covering all
Hon Professor, University of Cape Town
survey aspects, from conceptualization of the survey to dissemination of the report and data use. President and CEO, Evidence Based Solutions and
The major focus is on key populations, which are
Chris Beyrer
often hidden and difficult to measure as part of general population-based surveys. This is particularly important
Desmond M. Tutu Professor of Public
because key populations are at high risk for HIV, and for
Health and Human Rights,
exclusion from HIV and other health services. Estimating
Johns Hopkins University,
the size of these populations and their burden of HIV
Bloomberg School of Public Health
disease is extremely challenging, and these guidelines are a valuable resource for survey specialists as they undertake the surveys. The guidelines fill a gap in providing tools for surveying HIV prevalence in key populations, and the included questionnaires may also inform general population surveys. The 2000 Behavioural Surveillance Survey guidelines, while still useful, needed to be updated with newer survey methodology techniques and to incorporate biomarker testing. The guidelines will also serve as a textbook for students interested in working for research institutions that embark on epidemiological surveys. Currently, many researchers undertake surveys using country-specific indicators. These guidelines standardize the conduct of biobehavioural surveys to permit comparisons between as well as within countries over time. The use of common indicators allows for uniformity in the measurement of items and production of data that can be used by various global, regional, national and local actors in planning prevention and treatment services, tracking progress in the provision of HIV prevention and treatment services, and identifying gaps in access to services. The appendix on indicators will help scientists and data specialists to harmonize data management with a view to collaborating across countries using common yardsticks.
Foreword │
1 Preface
Biobehavioural surveys (BBS) provide specific population-
- respondent driven sampling covers this peer-driven
level estimates for the burden of HIV disease and chain-referral sampling method, which is HIV-related risk factors, and estimates for the coverage particularly useful for hard-to-sample populations, of prevention and treatment services for populations and is currently viewed as the most suitable at increased risk for HIV. These key populations include probability-based sampling design. men who have sex with men, sex workers, people who
- biomarker considerations covers the entire range of
inject drugs, transgender individuals, prisoners and other biological measurements, from HIV serology to viral vulnerable populations at increased risk for HIV infection. load, HIV recency, and biomarkers of other sexually
For many of these stigmatized and socially marginalized transmitted infections. The document emphasizes populations, there are no conventional sampling frames, the potential of population-level, aggregate viral-load meaning that complex sampling designs are needed metrics, such as prevalence of unsuppressed viral load. for these populations. The most frequently used survey
- population size estimation provides guidance on
guidelines and tools to date are the Behavioral surveillance using integrated methods to estimate the number
surveys
, issued in 2000. However, new HIV prevention, care of members of a population. and treatment policies – coupled with the emergence of
- questionnaire modules are included for collecting
new data needs, methods and technologies – warranted data on a wide range of topics, including a thorough update of the 2000 publication. Thus, the US exposure to and uptake of HIV-related services. Centers for Disease Control and Prevention, FHI 360, the
Accompanying this publication will be electronic Joint United Nations Programme on HIV/AIDS (UNAIDS) ready-to-use questionnaires, with the aim of and the World Health Organization (WHO) are publishing keeping the questionnaires up-to-date as standards these new Biobehavioural survey guidelines for populations and indicators change.
at risk for HIV
. This revised publication outlines the latest lists standard and newly proposed
- indicators appendix
approaches and methodologies, and includes updated indicators for both data and biomarker-related metrics. questionnaires for planning and conducting BBS.
These guidelines, built on the lessons learned by experts The new BBS guidelines are a comprehensive resource that and implementers from around the world, are intended covers all survey aspects, from conceptualization, planning, to serve as a one-stop resource for survey planning and undertaking and costing of the survey to dissemination implementation, and dissemination of findings. They of a report and use of data. The ultimate goal of these are expected to improve the quality of survey data guidelines is to facilitate the collection of high-quality through better survey design and implementation, and survey data for informed public health action. to promote the standardization of data measures to improve the comparability of survey data. Most of all,
The new guidelines: the guidelines should make it easier to plan and conduct BBS. By providing sample documents and guidance on
- update the overall approach and methodology of every step of the process, we hope that these guidelines
BBS in light of advances made during the past two strengthen the capacity of public health workers to decades; collect the information they need in a timely manner,
- improve the quality of BBS by providing allowing for an effective and strategic response to stop comprehensive guidance, particularly for sampling the HIV epidemic among key populations.
methods and the collection of interview and biomarker data;
Dr Shannon Hader
- increase the relevance of survey data for public
Director, Division of Global HIV and TB,
health programming by ensuring the collection of
Center for Global Health/CDC
representative and actionable data; and
- promote the use of survey findings to improve
Dr Gottfried Hirnschall
service delivery, monitoring and evaluation, and
Director, Department of HIV/AIDS and Global policy development.
Hepatitis Programme, WHO Dr Luiz Loures
This document includes several new topics and features:
Deputy Executive Director, Programme Branch, UNAIDS.
- formative assessment covers the initial collection of
information about a population, to inform how best
Dr Timothy Mastro to prepare and conduct a BBS.
Chief Science Officer, FHI 360 2 │ Preface Abbreviations and Acronyms ACASI
audio computer-assisted self-interview
probability proportional to size
Questionnaire Development System
QDS
quality assurance
QA
people who inject drugs
PWID
primary sampling unit
PSU
pre-exposure prophylaxis
PrEP
PPS
research ethics committee
prevention of mother-to-child transmission
PMTCT
post-exposure prophylaxis
PEP
polymerase chain reaction
PCR
nongovernmental organization
NG Neisseria gonorrhoeae NGO
nucleic acid amplification test
NAAT
men who have sex with men
REC
RDS
measure of size
TLS
WB western blot YCS
viral load
VL
venereal disease research laboratory
VDRL
unique participant code
UNAIDS Joint United Nations Programme on HIV/AIDS UPC
United Nations
UN
time-location sampling
transgender person
respondent-driven sampling
TB tuberculosis TG
sex worker
SW
transmitted infection
STD/STI sexually transmitted disease/sexually
simple random sampling
SI sampling interval SRS
standard operating procedure
RS random start RT rapid test SOP
rapid plasma reagin
RNA ribonucleic acid RPR
MSM
MoS
ART
Centers for Disease Control and Prevention
DNA
direct fluorescent antibody
DFA
design effect
DBS dried blood spot DEFF
CT Chlamydia trachomatis
capture-recapture method
CRC
confidence interval
CI
CDC
EIA
conventional cluster sampling
CASI computer-assisted self-interview CCS
computer-assisted personal interview
CAPI
community advisory board
CAB
biobehavioural survey
BBS
antiretroviral
ARV
antiretroviral therapy
deoxyribonucleic acid
enzyme immunoassay
institutional review board
hepatitis C virus
IRB
information, education and communication
IEC
ID identification number
HSV-2 herpes simplex virus-2
Human Sciences Research Council
HSRC
human papillomavirus
HPV
human immunodeficiency virus
HIV
HCV
EMoS
hepatitis B virus
HBV
game of contacts
GoC
family planning
FP
female sex worker
FSW
equal probability sampling
EPS
estimated measure of size
Y chromosomal sequences Table of Contents
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24 A-4.5 Ongoing formative assessment A-4.6 References
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A-1.1 Rationale for including stakeholders A-1.2 Stakeholder contributions A-1.3 Stakeholder engagement process A-1.4 References
A-2.1 Reflect on the HIV epidemic A-2.2 Consider epidemiological factors when choosing target population for BBS A-2.3 Conduct an initial review of information about proposed target population A-2.4 Ensure adherence to ethical standards A-2.5 Ensure funding is sufficient to meet objectives A-2.6 Consider timing and intervals between BBS rounds A-2.7 References
A-3.1 International guidelines for human subjects research A-3.2 Fundamental ethical principles A-3.3 Research ethics committees A-3.4 Sampling of participants A-3.5 Obtaining voluntary informed consent A-3.6 Ensuring privacy and confidentiality A-3.7 Personal identifying information A-3.8 Data security A-3.9 Reimbursement to participants A-3.10 Return of test results A-3.11 Treatment and referral A-3.12 Adverse events, protocol deviations and protocol amendments A-3.13 Research ethics training A-3.14 Special considerations for incarcerated populations A-3.15 Web-based surveys A-3.16 References
A-4.1 The purpose of formative assessment A-4.2 Formative assessment objectives A-4.3 Conducting a formative assessment A-4.4 Optimal use of information gathered through the formative assessment
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A-5.1 Key steps in questionnaire development A-5.2 Summary A-5.3 References
A-6.1 Biomarker selection A-6.2 Resource availability A-6.3 Ethical considerations A-6.4 Providing test results to participants A-6.5 On-site or off-site testing A-6.6 Treatment and referral A-6.7 Testing for HIV biomarkers A-6.8 Testing for non-HIV biomarkers A-6.9 Selection of tests and testing algorithms A-6.10 Development of standard operating procedures A-6.11 Specimen type, collection, labelling, processing and transport A-6.12 Laboratory data management A-6.13 Laboratory procedures A-6.14 Specimen repository A-6.15 Quality assurance (assessment) and quality control A-6.16 Supply chain considerations A-6.17 Biosafety and biosecurity A-6.18 References
A-7.1 Specimen tracking forms A-7.2 Specimen transport logs A-7.3 Refrigerator or freezer temperature logs A-7.4 Test results form
A-8.1 Defining the population A-8.2 Verifying eligibility A-8.3 Elements of eligibility A-8.4 Exclusion criteria
A-9.1 Concepts used in sampling, and types of sampling A-9.2 Nonprobability sampling methods A-9.3 Cluster sampling overview A-9.4 Procedures for two-stage and multistage sampling A-9.5 Conventional cluster sampling versus time-location cluster sampling A-9.6 Time-location sampling A-9.7 Respondent-driven sampling A-9.8 References
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92 101
A-10.1 Considerations for determining sample size A-10.2 Additional considerations A-10.3 References
A-11.1 Population size estimation based on surveys A-11.2 Emerging methods A-11.3 Selecting a method A-11.4 References
A-12.1 Qualitative studies A-12.2 Cohort studies A-12.3 Partner surveys A-12.4 References
A-13.1 Data documentation A-13.2 Data dictionary A-13.3 Unique participant identifier A-13.4 Data-quality checks A-13.5 Skip patterns A-13.6 Data entry A-13.7 Data confidentiality A-13.8 Data access and use A-13.9 Data backup A-13.10 Data archiving and version control A-13.11 Data security and storage
A-14.1 Considerations for field staff selection A-14.2 Field staff roles and responsibilities: non-method specific A-14.3 Field staff roles and responsibilities: method specific A-14.4 Considerations for staff payment
A-15.1 How to write a standard operating procedure A-15.2 BBS activities that require an SOP A-15.3 Sampling-specific SOPs A-15.4 SOPs for checklists, logbooks labels and forms
A-16.1 Training A-16.2 Training methods
103 107 108 112 116 117 119 121 130 131 133 135 135 136 136 137 137 137 137 138 138 138 140 141 142 142 143 143 144 144 146 147
B-1.1 Surveys using nonprobability sampling methods B-1.2 Conventional cluster sampling B-1.3 Implementation of time-location sampling B-1.4 Respondent-driven sampling
B-2.1 Observing data collection B-2.2 Laboratory monitoring
B-3.1 Identifying and correcting data errors
C-1.1 Developing a data analysis plan C-1.2 Preparing a dataset for analysis C-1.3 Analytical methods for BBS data C-1.4 Combining multiple surveys and subsetting data for analysis C-1.5 Comparing surveys C-1.6 Suggested resources C-1.7 References
C-2.1 Potential uses for BBS data C-2.2 Identifying a target audience C-2.3 Tailoring a message C-2.4 Determining a dissemination strategy C-2.5 Additional considerations for BBS data interpretation C-2.6 Relevant websites C-2.7 References
C-3.1 Data collection for evaluation C-3.2 Using evaluation findings
C-4.1 Data Sharing C-4.2 References
149 152 156 167 174 174 176 186 187 193 196 196 199 199 200 201 202 202 203 204 204 205 206 207 208
Supplemental Materials
Section I: Appendices
86
1 133
8. Transgender Characteristics
7. Demographics
6. ACASI Tutorial
5. Size Estimation
4. RDS Personal Network Size
3. RDS Recruiter-Recruit Relationship
2. Eligibility
1. Questionnaire Parameters
I-1: Protocol Checklist I-2: Sample Budget Calculator and Gantt Chart (Survey Timeline) I-3: Sample Consent Form I-4: Survey Design Checklist I-5: Brief Demographic Survey for Key Informants and Focus Groups I-6: Formative Interview Guide for Gatekeepers I-7: Formative Assessment Questionnaire Guide for Target Population I-8: Formative Mapping I-9: Safety and Security Guide I-10: Specimens Used for HIV Testing I-11: Material Transfer Agreement I-12: Interpretation of Hepatitis Serologic Test Results I-13: Specimen Tracking Form I-14: Specimen Transportation Driver Log I-15: Comparison of HIV Testing Technologies I-16: Specimen Temperature Monitoring Logs I-17: Sample HIV Rapid Testing Results Log I-18: Equal Probability Sampling (EPS) and Probability Proportional to Size (PPS) Cluster Sampling Guide I-19: Survey Implementation & Quality Assurance – Data Collection - TLS I-20: Venue Observation Forms I-21: Unique Participant Code (UPC) I-22: Sample Size Requirements to Detect Differences I-23: Calculator for the Number of Unique Objects for Estimating Population Size I-24: Qualitative Interview Guide I-25: Qualitative Interview for Target Population (FSW) Consent Form I-26: Formative Assessment Consent Form for Key Informants I-27: Data Management SOP for RDS Survey Using QDS I-28: Sample Data Dictionary I-29: Staff Data Agreement I-30: Specimen Handling (Collection, Processing, and Storage) SOP I-31: Recruitment Training Script I-32: RDS Participant Checklist I-33: Data Error Audit Log I-34: Sample Table of Contents for Survey Report I-35: Sample Press Release I-36: Data Presentation Guide I-37: Data Use (Confidentiality) Agreement
99 100 101 102 109 110 112 114 116 118 120 122 125 126 128 130 132 136 140 151 154 156 159 162 171
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Section II: Questionnaire Modules
9. Sex Work Characteristics
40. RDS, Peer Recruitment 176 185 188 196 200 208 218 239 243 249 256 261 264 270 277 295 301 306 309 341 346 369 383 403 406 410 415 431 437 439 442 444
33. Depression
34. Suicide Ideation and Attempts
35. Social Support
36. Social Cohesion, Social Participation and Collective Agency
37. Game of Contacts
38. HIV Knowledge and Perceptions
39. Questionnaire Feedback/Interview Status
Introduction
31. Sexual Violence: Coercion and Rape
What are indicators? How are data collected for indicators? How are indicators used? Indicator selection for these guidelines
Indicators
Sexual debut Condom use at last sex Consistent condom use Buying sex Selling sex Unprotected receptive anal intercourse Alcohol use Injecting drug use
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460
460 461 463 464 465 466 467 470
451
32. Internalized Homophobia
30. Physical Violence
10. Clients Of Sex Workers Characteristics
19. Lubricant Use
11. Incarceration Characteristics
12. Transport Worker Characteristics
13. Reproductive Health
14. Sexual History
15. Recall Sexual Behavior
16. Partner Concurrency
17. Last Sex Act
18. Condom Use/Accessibility
20. Microbicides
29. Shame, Stigma, Harassment & Discrimination
21. Alcohol Use
22. Non-Injection Drug Use
23. Injection Drug Use
24. Drug Overdose
25. Sexually Transmitted Infections
26. Hepatitis B and C
27. Services Uptake
28. PEP and PrEP
Section III: Indicators
Received clean needles or syringes Sharing injecting equipment Sharing drug-preparation equipment Use of sterile injecting equipment Received medication for drug dependency Drug overdose Drug overdose prevention training Targeted information, education and communications Received condoms Never tested for HIV HIV test in last 12 months Tuberculosis screening Received tuberculosis treatment Currently in care CD4 count Currently on antiretroviral therapy Prevention of mother-to-child transmission Hepatitis B virus testing Hepatitis C virus testing Discussed pre-exposure prophylaxis Taken pre-exposure prophylaxis Current use of modern family planning methods Antenatal clinic access and HIV testing Seeking care for sexually transmitted infection symptoms Sexually transmitted infection screening Received sexually transmitted infection treatment Received lubricants HIV knowledge and perceptions Incarceration Health-care stigma Discrimination and social exclusion Violence Condom use at last sex (sex workers only)
Biomarker Indicators
Eligible but not on HIV treatment HIV treatment coverage Viral load suppression Unsuppressed viral load Population viral load HIV/sexually transmitted infection coinfection HIV/hepatitis coinfection HIV prevalence Sexually transmitted infection prevalence
471 472 473 474 475 476 477 478 479 480 481 482 483 484 485 486 487 488 489 490 491 492 493 494 495 496 497 498 499 500 501 502 504
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Section IV: Glossary
Introduction Background
1 Rationale for the guideline
2
3 Objectives Target audience
5 Structure
4 Introduction Relationship to other resources
6 References
7 A Survey preparation
B Survey implementation
& quality assurance C
Data analysis and use Foreword │
11 Background
An understanding of HIV burden, risk factors, and coverage of prevention and treatment services is critical for combatting the HIV epidemic (1). Thus, biobehavioural surveys (BBS) assessing these parameters are integral components of a national HIV strategy and surveillance system. These guidelines outline the latest approaches and methodologies for planning and conducting such surveys. Countries that implement repeated BBS can monitor changes in their populations’ risks for HIV, determinants of those risks, and access to prevention and treatment over time. Many individuals at high risk for HIV are socially marginalized and may not identify themselves as such when accessing services. This makes it difficult to track them in HIV programme registers, and impedes efforts to assess the effectiveness of services. Such key populations include sex workers (SW), men who have sex with men (MSM), transgender women (TG) and people who inject drugs (PWID), all of whom are at increased risk for HIV infection compared with the population at large (2-7). These guidelines describe sampling designs and methods for conducting surveys among key populations for which ready-made sampling frames are not typically available. As affirmed by the Joint United Nations Programme on HIV/AIDS (UNAIDS)/WHO in the publication Guidelines
for second generation HIV surveillance: an update: know your epidemic (8)
- efficient transmission of infection via unprotected anal sex and needle-sharing behaviours;
- frequent exposure to infection via multiple sex partners if not consistently using condoms;
- high HIV prevalence among networks of sexual or drug-injecting partners; and
- inferior access to quality health care compared to individuals in the general population.
HIV surveillance among these key populations is a priority in all epidemic settings. In countries where the majority of HIV transmission takes place among members of the general population, data from HIV surveys among the general population should be used together with data from BBS among key populations to inform the epidemic response. This is due to the realization that countries previously categorized as having ‘generalized’ epidemics in fact experience ‘mixed’ epidemics, where HIV epidemics exist simultaneously among the general population and key populations. Separate surveys for key populations are warranted in such settings because key population members are usually not well identified or covered in general population surveys.
Although these guidelines focus on key populations, they are also applicable to other populations, such as clients of SW, prisoners, transportation workers and migrants. The term “target population” is used here to denote any survey group deemed to be at high risk for HIV infection, including key populations. HIV control efforts directed at key and other high-risk populations can have a substantial impact on the epidemic. HIV policies and programmes will be more effective if they are informed by accurate measures of
HIV prevalence and incidence among those populations, trends in their HIV-related risk behaviours, and the extent to which they access prevention and treatment services. This makes surveys critical tools for monitoring the HIV epidemic and evaluating HIV control efforts. UNAIDS and other groups have projected that 28–65% of new HIV infections in the People’s Republic of China, the Dominican Republic, Kenya, Mozambique, Nigeria and Peru are among key populations and their partners
(2-7)
. Up to 30% of all HIV infections worldwide are due directly or indirectly to sex work, which can involve male, female and transgender individuals, demonstrating the importance of considering all genders when planning BBS (9) . Additionally, global prevalence of HIV among MSM is 19 times higher than in the general population, and prevalence among TG is 48 times higher (10-12). Meanwhile, PWID represent an estimated 10% of all HIV infections globally (13) and are 22 times more likely to be HIV-infected compared to the general population (14). For SW, HIV transmission is more likely to occur due to inconsistent condom use with multiple partners. MSM and TG are at high risk because HIV transmission is five times more likely to occur during unprotected, receptive anal sex than during vaginal sex (15). Among PWID, sharing nonsterile needles or syringes is a highly efficient way to transmit HIV (16). Elevated risk for HIV transmission and acquisition among key populations is primarily related to four factors:
Key Populations and Risk Being an SW, MSM, TG or PWID alone does not increase the individual risk for getting or transmitting HIV. Rather, risk is elevated when individuals practise “unsafe” behaviours (i.e. have vaginal or receptive anal sex without a condom or share nonsterile injecting equipment) with partners who have a different, or discordant, HIV status from them.
The underlying reason that key populations are at higher risk for HIV is that HIV prevalence among their sexual or needle-sharing network is already high. Although members of the general population also engage in frequent vaginal and anal sex without condoms, their chance of having an HIV-infected partner is much lower than that of members of key populations.
I │ Introduction
(18)
- update the overall approach and methodology of
- improve the quality of BBS by providing comprehensive guidance, particularly for sampling methods and the collection of interview and biomarker data;
- increase the relevance of BBS for public health programming by ensuring the collection of representative and actionable data; and
- promote the use of survey findings to improve service delivery, monitoring and evaluation, and policy development.
Introduction │
as the “Red Book” because of the colour of its cover, that document has been widely used as a guide for conducting BBS among populations at risk for HIV. The HIV landscape has changed significantly since the arrival of combination antiretroviral treatment in the 2000s in low- and middle-income countries. In addition, data needs and survey methods have changed substantially in the years since then. New sampling methods have emerged, such as respondent-driven sampling (RDS). Surveys increasingly include tests for biomarkers (e.g. HIV serostatus, CD4+ T-cell count, viral load, other sexually transmitted infections or viral
in populations at risk for HIV (25). Informally known
In 2000, Family Health International (now known as FHI 360) issued a resource for HIV survey protocol development, implementation and data interpretation entitled Guidelines for repeated behavioral surveys
Rationale for the guideline
. Conversely, laws that prohibit discrimination against certain populations are correlated with better access to prevention services by the populations. Sociostructural factors such as stigma, harassment, marginalization and lack of social support can contribute to higher transmission of HIV and other infections. This is particularly apparent among sex workers, sexual minorities and persons who inject drugs (20, 21). Social marginalization or rejection can force individuals into isolation, unemployment, poverty and unstable living conditions or homelessness. It can also expose them to physical and sexual violence, and limit their access to HIV outreach commodities and educational messages (22). Fear of police harassment, arrest or discrimination by health-care providers may also discourage members of key populations from accessing prevention and treatment services. In an assessment of the HIV prevention services available to MSM in 147 low- and middle-income countries, 55% were unable to document provision of even the most basic HIV-related services (23). It is estimated that, worldwide, only 4% of PWID with HIV who are eligible for treatment are on antiretroviral therapy (ART) (24).
(19)
. In countries where the behaviours of SW, MSM, TG or PWID are criminalized, and those laws are enforced, the negative impact on access to services is even greater
There are many excellent resources related to HIV surveys (26), population size estimation (27), and second-generation HIV surveillance (1, 8). This document supplements and complements these resources. Policies that criminalize behaviours of key populations or limit their access to services may further elevate their risk of acquiring and transmitting HIV. For example, more than two thirds of sub-Saharan African countries criminalize same-sex practices (17). Criminalized populations receive less than 25% of intended human- rights-focused interventions, and may consequently lack access to services necessary for protecting themselves
hepatitis), qualitative interviews and population size estimation activities. The ethics of conducting surveys with HIV testing – particularly the return of test results to participants – have also evolved.
Relationship to other resources
These guidelines are written for policy-makers, organizations and technical staff who are planning or conducting BBS among key populations and other at-risk populations. The document is applicable for all settings, but particularly for low- and middle-income countries. We assume that the reader possesses a basic understanding of epidemiological and survey principles, sampling, inference and measures of risk.
Target audience
BBS in light of advances made during the past decade;
These guidelines aim to:
Objectives
These guidelines aim to facilitate BBS design and implementation in this context of evolving survey methods and measures. The ultimate purpose of the document is to facilitate the collection of high-quality survey data that will lead to informed public health action.
National governments, donors and United Nations (UN) agencies increasingly require data on access to HIV services, particularly because of the important role of antiretroviral therapy (ART) in HIV treatment and prevention. Engaging target populations and other stakeholders has become more important for survey planning and implementation, as has providing third-party researchers broader access to survey data.
II III │ Introduction
3 UNAIDS. Country snapshot: China: HIV and men who have sex with men. Joint United Nations Programme on HIV/ AIDS (UNAIDS); 2012 (http://www.unaids.org.cn/pics/20121227100804.pdf, accessed 4 August 2016).
modules
2 PAHO. Modos de transmisión del VIH en América Latina. Pan American Health Organization (PAHO); 2009 (http:// www.unaids.org/en/media/unaids/contentassets/documents/countryreport/2009/20090810_MOT_Peru_es.pdf, accessed 3 August 2016).
1 UNAIDS/WHO Working Group on Global HIV/AIDS and STI surveillance. Guidelines for second generation HIV surveillance: the next decade. Geneva: Joint United Nations Programme on HIV/AIDS (UNAIDS)/WHO Working Group on Global HIV/AIDS and STI surveillance; 2000 (http://www.who.int/hiv/pub/surveillance/pub3/en/index. html, accessed 4 August 2016).
References
The supplementary materials include an array of resources, including references for further reading and examples of protocol checklists, survey consent language and data analysis commands for commonly used software packages. We hope these updated guidelines will facilitate the collection of more detailed, accurate and relevant data among populations at risk for HIV and thus facilitate more effective HIV services, advocacy and policy-making.
The data instruments have undergone considerable modifications compared with those in the original guidelines; for example, they now include questions on the continuum of care. Rather than complete, stand- alone data instruments for distinct target populations, the instruments are organized as modules focused on particular topics. This provides users with more flexibility to construct data instruments according to local priorities and the needs of each target population. The data instruments’ core variables have also been made available in ready-to-use electronic form. Indicators and other standardized data measurements facilitate comparison of the HIV epidemic between different time points, locations or populations. The recommended reference sheets for data measurements are harmonized with indicators used by the UN and other global organizations engaged in HIV funding and programming. This section also includes additional data measurements recommended by the guidelines’ authors.
(Section II), Indicators (Section III) and Glossary (Section IV). The collection of data through standardized data instruments is the core of any survey activity.
The document also includes extensive supplementary materials: Appendices (Section I), Questionnaire
However, BBS are just one data source informing key population HIV epidemics; others include population size estimation, mapping, HIV case surveillance, cohort studies, programme-based data and, further upstream, data on policy, stigma and discrimination. These guidelines are not intended for general population or household-based surveys; other resources are available for those purposes.
, focuses on monitoring and field supervision during survey implementation and data management, and specific cluster survey and RDS-related considerations for survey conduct. Section C, Data analysis and use, addresses data analysis, data use, preparation of anonymized individual data files for data sharing, and evaluation of the completed survey.
Survey implementation and quality assurance