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OCR for page 207
Methodological Issues in AIDS Surveys
To supplement our discussion of evaluation measurement in Chapter 2, this
appendix presents an excerpt on measurement issues in AIDS research from
AIDS, The Second Decade (Miller, Turner, and Moses, 1990:3594711. Readers
my also wish to consult the discussion of sampling and related issues in the
prior report, AIDS, Sexual Behavior, and Intravenous Drug Use (Turner, Miller,
arm Moses, 1989:147-157, 214-225J.
INTRODUCTION
Surveys or, more generally, He memos of asking questions and recording
answers, continue to be one of the most important methods for obtaining
essential information about Be epidemiology of AIDS and ~V, He be-
haviors Hat spread ~V, and the effectiveness of AIDS prevention efforts.
Previous reports of our committee have included numerous examples of
surveys and obsenabons about the methodological difficulties that often
attend these measurements.
Because of the central role surveys play in research on AIDS and
~V, this appendix focuses on methodological aspects of this data-
gather~;ng method Hat have important consequences for He usefulness
of survey data. This appendix contains much technical material and
methodological detail. Our aim in presenting this material is to provide
researchers conducting AIDS surveys or analyzing data collected In such
surveys win a detailed review of the current state of methodological re-
search In this area. Readers who seek only a synopsis of our conclusions
and recommendations may wish to consult pages 27-34 of the summary
chapter of the report AIDS: The Second Decade (Miller, Turner, and
Moses, 19901.
207
OCR for page 208
208 ~ APPENDIX C
Before honing to specifics, it may be useful to consider data gathering
in general and the types of problems that may compromise the collection
of accurate and informative data. One may usefully distinguish five
aspects of survey data collection: (~) the definition of the population to
be studied and the drawing of a target sample from that population; (2)
the execution of the sample design, that is, finding the persons in the
target sample and enlisting their cooperation in the survey; (3) the posing
of questions to elicit Me desired information; (4) the answering of those
questions by the respondent; and (5) the recording of those answers (~d
subsequent data processing and analysis).
To examine these elements, let us consider a hypothetical survey
(much like the decennial census) that targeted all households in a par-
ticular junsdiction of the state of Texas. Let us suppose further that the
information to be obtained concerned automobile ownership (e.g., how
many automobiles were owned by each household, the make and year of
the autos, etc.~. This survey, although not simple to conduct, would nev-
er~eless be considerably less difficult to conduct than a survey seeking
to assess behaviors that transmit REV; In particular,
· the survey involves matters of fact that are both open to
direct observation and matters of public record (e.g., make
and year of automobiles owned by household);
· We topic is unlikely to be regarded as sensitive or "nri-
vate" by respondents, although as in any survey—some
respondents may not wish to take the time to respond;
· developing questions about this topic can draw on a widely
shared vocabulary (i.e., there is little ambiguity about what
constitutes a "car" or "ownership";
· respondents who are not wed informed can consult win
other household members or check records (e.g., registration
certificates);
checks of survey accuracy can be made at Me group leve]
(by comparing the rates of auto ownership found In Me
survey and in registration records) and at the individual
level (by checking individual regis~ationsi); and
· census data on income and statewide auto reg~s~ation data
are available to target Me survey efficiently toward seg-
ments of Me population of particular interest (e.g., current
or "potential" owners of Belchfire 500s).
Ache survey may, however, produce detailed information Bat cannot be verified from public records
for example, die proportion of Belchfire 500s owned by persons with 16+ years of education.
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METHODOLOGICAL ISSUES ~ 209
Surveys that inquire about sexual behaviors or IV Mug use differ
in several ways from He foregoing example, and these differences pro-
vide a much greater challenge to the survey (or question-and-answer)
method. First, many of the logical "target populations" for drug use
and sexual behavior surveys cannot be identified reliably from officio]
statistics. There are few reliable data on the distnbution across the na-
tion of persons who engage In behaviors that risk HIV transmission.
Furthermore, the behaviors in question occur In private and cannot be
verified by direct observation or public records. Many of the behaviors
are actively concealed because they are considered illicit (IV drug use is
illegal throughout the nation, and many sexual behaviors of interest in
preventing HIV transmission are illegal in some states). Thus, the topics
these surveys cover are likely to be highly sensitive, which may create
difficulties in enlisting the cooperation of persons ~ a target sample and
in obtaining permission from "gatekeepers" (e.g., high school authorities)
who control access to particular populations (e.g., high school students).
This appendix considers these problems and reviews the available
empirical evidence gathered from surveys of sexual and drug use behav-
iors. Before beginning this review, however, some cautionary words are
in order. The evidence presented here regarding errors In data about sen-
sitive behaviors might lead some readers to unwarranted and wholesale
rejection of survey findings on these important topics.2 Indeed, consid-
er~ng the litany of difficulties presented In this appendix, some readers
may ask whether anything at all can be learned from surveys or whether
surveys have a useful role to play in research on AIDS and REV trans-
mission. The following considerations prompt the committee to answer
"yes" to these questions.
The most important consideration arises directly from the nature
of the disease. HIV infection occurs through the joint operation of the
biology of this particular infectious virus and the human behaviors that
transmit it. In the absence of vaccines, all interventions that seek to
retard the spread of HIV infection focus on changing human behaviors
to diminish the probability that the virus will be transmitted. Data on
these behaviors are needed for a number of important purposes for
example, to understand the factors that motivate and shape the behaviors
and to determine whether behaviors that transmit HIV are becoming less
frequent in the population.
It might, of course, be argued that merely mo~to~g changes in He
prevalence of HIV would be sufficient to determine whether behaviors
2The following pages borrow heavily from He discussion of errors in survey measurements in linger
and Martin (1984:Vol. 1, 1016) and Tumer (1989).
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210 ~ APPENDIX C
change was occulting. Although this argument is true to some extent,
there are important deficiencies in any strategy that eschews direct mea-
surement of the behaviors themselves. Reliable data on HIV prevalence
and incidence, although of great value for many purposes, are only a
final accounting of the number of infected and uninfected persons in He
population. From the viewpoint of prevention, such statistics serve best
as a catalog of failures. Yet, those who are uninfected are not necessary
successes. For example, the very low rate of HIV infection in states
like Wyoming does not necessarily imply that the population has adopted
protective behaviors. Instead, the low rate of HIV prevalence could be
attnbutable to an epidemiological happenstance (e.g., isolation—in teens
of sexual contacts and injection equipment sharing from populations
with high HIV prevalence.)
Determining whether protective behavioral changes have occurred fin
Wyoming or anywhere else) requires asking questions about these risky
behaviors. This activity, In tum, raises a host of methodological issues
that are germane to survey research of aU types plus some questions Hat
are specific to surveys of drug use and sexual behavior. The questions may
be quite basic: Are the respondents telling the truth? Do Hey understand
the meaning of the survey questions In He same way the investigator
does? Simple or complex, such questions inevitably introduce a degree
of uncertainty into the interpretation of aD survey data. Grappling with
these issues forces an appreciation of the human interac cons that produce
survey measurements.
process
Elsewhere it has been argued that fundamental aspects of the survey
are quintessentially social psychological in character. They arise from a
complex interpersonal exchange, they embody the subjectivities of both
interviewer and interviewee, and they present their interpreter with an
analytical challenge that requires a multitude of assumptions concerning,
among other things, how respondents experience the reality of the interview
situation, decode the "meaning" of survey questions, and respond to the
social presence of the interviewer and the demand characteristics of the
interview. (Tu~ner, 1984:202)
Although this "analytical challenge" may be substantial, researchers
are aided in their task by several decades of methodological research
(see, for example, Sudman and Bradbunn [1974], Bradburn and Sudman
[1979], Rossi, Wright, and Anderson [1983], Turner and Martin [1984],
and Catania et al. [199Oa,bl). A further reason for not abandoning
behavioral measurement is that many of the problems encountered in this
arena are not unique. Useful lessons may thus be learned from other
disciplines that also confront such challenges.
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METHODOLOGICAL ISSUES ~ 21t
Fallibility of Measurement in Other Sciences
Fallibility and error are not confined to behaviors measurements, as
evidenced by the decade-Ion" controversy suuTounding the population
statistics produced by the decennial censuses.3 Furthermore, just as falli-
bility of measurement is not limited to behavioral measurements, neither
is it I:m~ted to surveys or social statistics. For example, Hunter (1977)
and Lide (1981) have noted the variability among measurements of such
elementary physical phenomena as the thermal conductivity of copper
(Figure C-1~. As Hunter observed, "although each analyst measured
a physical quality that did not vary with location or time, it is clear
that a remarkable vanability attended He measurements" (1977:2~. He
concluded: "The variation in attempting to evaluate the same physi-
cal constant is obvious. This example is not unusual. Similar plots of
thermal conductivity as a function of temperature for approximately 400
common metals and materials can be found in a supplement to the lour-
nal (Ho, Powell, and Liley, 1974~. Nor is the observed variation in the
measurement of 'thermal conductivity' unique among physical paramet-
ers ... ."
Common biological measurements have shown similar fallibility.
Examples include data collected by CDC Hat show substantial variation
in the est~rnates made by different laboratories of the amount of lead in
identical samples of blood. For a sample of blood with a putative lead
concentration of 41 milligrams per deciliter (mg/Dl), 100 cooperating
laboratories produced measurements that ranged from 33 to 55 mg/Dl;
this result prompted He reviewer to observe: "Clearly, whatever He
true amount of lead in a sample, the variability demonstrated [in these
measurements] guarantees numerous false alanns Perhaps more ~m-
portant when the true level is high nonalanns" (Hunter, 1980:870~.
Another category of fallibility in the physical sciences involves "dis-
coveries" that are later shown to be experimental artifacts. For example,
between 1963 and 1974 more than 500 journal articles (including some
~ Science and Nature ~ discussed a supposed new substance: anomalous
water, or polywater. Although it resembled ordinary water, polywater
allegedly had a greater density, a reduced freezing point, and an elevated
boiling point, among over anomalous properties. In He end, however,
it was discovered Hat this "new substance" was nothing more than an
impure solution of ordinary water (Franks, 1981; Eisenberg, 19811.
3By October 1981, more than 50 lawsuits had been filed challenging die accuracy of the 1980 Cen-
sus results and their use in legislative apportionment and fund allocation decisions (Citro and Cohen,
1985:9).
OCR for page 212
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OCR for page 213
METHODOLOGICAL ISSUES ~ 2~3
Such examples indicate that the problems AIDS researchers confront
when they seek to assess sexual and drug-us~ng behavior are not unique
in the annals of scientific measurement. As Quinn McNemar observed
more than 40 years ago, "bat! measurement is befuddled with error.
About this the scientist can and does do something; he ascertains the
possible extent of the error, determines whether it is constant (biasing)
or vanable, or both, and ever strives to improve his instruments and
techniques" (1946:294~.
~ the following pages the committee reviews what is currently
known about the errors that afflict measures of sexual and drug-us~ng be-
havior and offers some prescriptions for how future measurements might
be improved. The first section of the appendix- reviews the experience to
date In mounting surveys and obtaining responses from We public. The
second section considers the reliability and validity of responses obtained
In surveys of sexual and drug use behaviors. The final section reviews
the use of anthropological research strategies that may provide important
complementary information to that obtained In surveys and that may also
be crucial in questionnaire development to improve the accuracy and
completeness of responses.
RECRUITMENT OF RESPONDENTS IN
SEX AND SEROPREVALENCE SURVEYS
Much of what is now known about the epidemiology of AIDS has come
from smaR-scale, local studies among subgroups thought to be at high
risk for infection. Participants In these studies were recruited through
venous sources and means from He clientele of local clinics or treat-
ment facilities or the membership rosters of local organizations, Trough
newspaper advertisements and physician referrals, and occasionally from
"sweet sampling." The yield from this research has been remarkably
rich. From these studies, researchers have identified the principal mecha-
nisms of REV infection (i.e., transmission Trough sexual contact, sharing
injection equipment In {V drug use, transfusion of contaminated blood
products); verified sexual transmission of HIV from male to male, female
to male, and male to female; measured the efficiency of transmission In
specific kinds of sexual contacts; and discovered some of the basic fea-
tures of the long natural history of this devastating disease. As valuable
as these studies are, however, the data drawn from them cannot address
many over important public health questions that arise because of AIDS,
such as: How large is He epidemic? What is the potential for general
spread of HIV infection? Can an HIV epidemic be sustained Trough het-
erosexual contact alone? To answer questions like these, the knowledge
OCR for page 214
214 ~ APPENDIX C
gained from measurements and observations cattier out in local studies
of special subgroups must be applied in large-scale investigations of pop-
ulations chosen not because of convenient or ready access but because of
their importance in understanding the genera] course of the epidemic.
This section considers the feasibility of sex and seroprevalence sur-
veys as a means of measuring the distribution of sexual behaviors that
risk HIV transmission and the distnbution of HIV itself in general pop-
ulations. Although such surveys may be designed in a variety of ways,
all of the studies discussed here employ the same general procedures
for participant selection: an unambiguous definition of the population to
be studied and a form of sampling from this population that allows the
probabilities of selection to be known. The potential advantages of a
probability sampling program for selecting survey participants are well
known. In principle, probability sampling permits the use of a large body
of statistical theory to make inferences from the sample to the larger pop-
ulation and avoids the possible biases inherent in recruitment by other
means.
The suggestion to use probability sampling for surveys of sexual
behavior was made more than three decades ago in connection with a
review of the statistical methods used In Kinsey, Pomeroy, and Mar-
tin's Sexual Behavior in the Human Male (1948) (Cochran, Mosteller,
and Tukey, 19531. The authors of this suggestion were a committee
of the Commission on Statistical Standards of the American Statistical
Association. At the invitation of Dr. Kinsey and the National Research
Council's Committee for Research on Problems of Sex, they were asked
to provide course! on ways to improve the statistical methods used In the
Kinsey research. They recommended a step-by-step program of prob-
ability sampling, beginning with a small pilot effort. They argued that
research of this kind would provide a check on the results obtained with
Kinsey's large, nonprobability sample. The committee was aware that
problems of cost and potentially high rates of nonparticipation in such
surveys would present special challenges. Their comments about the
limits of this approach are worth quoting at length because the issues
they raised more Han 30 years ago In relation to Kinsey's work remain
germane in evaluating He potential value of contemporary surveys of
sexual behavior.
In our opinion, no sex study of a broad human population can expect to
present incidence data for reported behavior that are known to be correct
to within a few percentage points. Even with the best available sampling
techniques, there will be a certain percentage of the population who refuse
to give histories. If the percentage of refusals is 10 percent or more, then
however large the sample, there are no statistical principles which guarantee
OCR for page 215
METHODOLOGICAL ISSUES ~ 215
Mat Me results are correct to within 2 or 3 percent, . . . but any claim that
this is Cue must be based on the undocumented opinion that the behavior of
those who refuse to be interviewed is not very different from that of those
who are interviewed. These comments, which are not a criticism of [Kinsey,
Pomeroy, and Mariin's] research, emphasize the difficulty of answering the
question: "How accurate are Me results?", which is naturally of great interest
to any user of the results of a sex study. (Cochran, Mosteller, and Pokey,
1953:675)
The rationale for using response rates as a "yardstick" to assess the
accuracy of survey estimates is twofold: (~) high response rates reduce
the influence of selective participation in surveys and hence the potential
for bias in the estimates, and (2) for a given target sample size and sample
design, the higher the response rate, Me larger the actual sample and the
smaller the standard error of estimate. In other words, high response rates
are better than low rates, provided the procedures used to achieve high
response rates do not increase the degree of selectivity or inaccuracy of
the responses.
Few contemporary surveys on any topic achieve response rates higher
than the 90 percent figure cited in Cochran, Mosteller, and Tukey's
review of Me Kinsey report; indeed, response rates in most surveys
are considerably below that mark. In principle, then, questions about
selective participation (i.e., about differences between respondents and
nonrespondents) are of concern in judging the accuracy of most survey
estimates, not only those that derive from surveys of sexual behavior.
Such concerns have generated a substantial literature on the character of
nonresponse in surveys and what to do about possibly biased estimation
resulting from nonresponse (see, for example, Goyder's 1987 synthesis
of nonresponse research and Me series of volumes on incomplete data in
sample surveys edited by Madow, Nisselson, and OLkin [198311.
Surveys with response rates that are much lower than 90 percent
may still provide useful estimates of population charactenshcs if it can
be established that participation or nonparticipation is unrelated to Me
characteristic for which an estimate is sought. Furtherrhore, response
rates higher Man 90 percent do not guarantee accurate estimation if
survey participation is highly selective. Thus, in most cases, Me value
of the response rate by itself is insufficient justification for claims of
accuracy or "representativeness" of survey estimates or for counterclaims
that estimates fail in this respect. Such claims should be based on careful
study, documentation, and possibly adjustment for bias as a result of
refusals and other sources of nonresponse.
In Me following review, the committee examines recent efforts to
survey sexual behavior and related HIV risk factors Mat use probability
OCR for page 216
216 ~ APPENDIX C
samples from general populations. The review focuses on participation in
such surveys and is motivated by the same concerns about nonresponse
in probability samples that were expressed in the review of the Kinsey
report. It attempts to answer three main questions: (1) What response
rates have been achieved In recent surveys of sexual behavior? (2) What
survey designs and procedures appear to be associated with higher versus
lower levels of participation? and (3) What can be said, at present,
about differences between sample persons who participate in sex surveys
and sample persons who refuse to participate or do not participate for
other reasons? (There is as yet too little information to hazard general
statements about differences between participants and nonparticipants
in seroprevalence surveys.) Questions about the validity and reliability
of survey responses about sexual behavior, which were also noted in
reviews of the Kinsey report, will be discussed in the later sections in
this appendix.
Scope of the Review
The committee chose 15 surveys for its review, including some that
are national in scope and some that target local populations. Most of
these studies were initiated after We AIDS epidemic began in response
to the need for population-based arsenates of sexual behaviors known to
be associated with HIV transmission. Both telephone and face-to-face
interviewing me~ods are represented, along with data collection through
self-a~Tninistered questionnaires. There are wide vanations among the
surveys In the proportion of questions they devote to measuring sexual
practices and other risk behaviors. Four surveys were included because of
their potential importance for monitoring the prevalence of HIV infection;
these surveys attempted to collect a blood specimen for REV serologic
testing from each sample person.
The committee used four criteria for including studies in its review:
(~) there was at least a minimal attempt to collect data on personal sexual
behavior and, In some cases, other HIV risk factors as well; (2) some
form of probability sampling was employed; (3) a response rate of He
form (number of survey participants)/(number of sample persons) could
be calculated; and (4) enough documentation was available to identify the
pnncipal characteristics of the survey design and sampling procedures.
Information about the designs, sampling procedures, and participation
rates of these surveys appears in Table C-~.
For the most part, the committee collected information about these
surveys from published accounts In books, journal articles, and survey
field reports. (The source documents are cited In Table C-~.) Occasion-
ally, it was necessary to rely on conversations win survey field managers,
OCR for page 217
METHODOLOGICAL ISSUES | 217
especially for surveys that had been completed at the time of this writing.
~ several other cases, documentation is partial because of incomplete
reporting or recor~keep~ng, or both. For these reasons, and because the
total number of surveys is small, the committee has not attempted a
statistical analysis of participation rates in relation to survey characteris-
tics. Nevertheless, the review does identify differences in response rates
In sex surveys that appear to be associated with procedural and design
variations. It also reveals several opportunities for learning more about
patterns of participation and nonparticipation.
Participation in Sex Surveys
Data Collection Procedures and Response Rates
Each of the surveys listed in Table C-1 asked respondents to report on
certain aspects of their past and present sexual behavior. For the most part,
the questions used in recent surveys (i.e., those initiated after the AIDS
epidemic began) attempt to measure the occurrence of sexual behaviors
associated with HIV infection and transmission and fall into three general
categories: sexual orientation (with a focus on homosexuality), selection
of sexual partners (number and characteristics of partners, presence of
same-sex partnerships), and manner of sexual intercourse (e.g., anal,
vaginal, oral). Because of the sensitive and highly personal nature of
these questions, virtually all of the surveys made some provision to
permit respondents to reveal the details of their sexual behavior without
undue embarrassment or fear of disclosure to third parties. Most of the
surveys included one or more of the following: special guarantees that
responses would be kept confidential; assurance of anonymity that is,
that the person viewing the results would not know the identity of the
respondent; privacy during the interview; and placement of the sensitive
questions near the end of the interview.
Apart from these similanties, the 15 surveys differ widely with
respect to basic methods of data collection and number of questions
about sexual behavior. Interviewing was conducted by telephone in four
of the surveys (nos. 3, 4, 9, and 10 In Table C-1), by face-to-face
interview in five cases (nos. 7, 8, 12, 13, and 14), and by a combination
of face-to-face interview and self-administered questionnaire (SAQ) in
six (nos. I, 2, 5, 6, Il. and 151. Virtually all of the surveys that contained
long, detailed inventories of sexual questions were conducted through
face-to-face or telephone interviews. When SAQs were used, the length
of the self-a~ninistered forms vaned considerably (some did not exceed
1 or 2 pages whereas others [e.g., survey no. 1] were more than 10 pages
long).
OCR for page 306
306
APPENDIX C
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Representative terms from entire chapter:
methodological issues
