Use number 2 pencil and complete the full bubble. If you need to erase, make sure mark is
Ask the questions as they appear on the form. For some questions, prompting or further
explanation is allowed. These are specified in the guidelines next to the corresponding
For dates that appear on the form, if the participant cannot remember the exact month
(and day), probe for the season. (Use "15" for the day if specific day cannot be recorded).
For open-ended questions, keep lists of responses. Interviewers should write responses,
exactly in the words of the respondent.
Be specific where possible.
Obtain the date of the participant's previous visit. This month should be used in the
Follow the skip patterns as they appear on the form.
If participant has been diagnosed with a clinical AIDS diagnosis:
a. Local option to ask Q.22-26
If participant has been diagnosed with AIDS but only because of low CD4+ T-cells
mark Q.47 PWA interview as "NO."
Question 1: Medical Conditions Indicative of AIDS
These conditions refer to illnesses which have been diagnosed since the participant's last MACS visit. If the participant does not remember if he reported an earlier diagnosis, record it.
For each "Yes" in a, complete b and c where required. In c, if participant had more than 9 episodes of
the disease, record "9." Obtain a signed medical release. Report to CAMACS on an Outcome Reporting
1.C - Specify the type of pneumonia. If type of pneumonia is some other type apart from pneumococcal,
other bacterial, or viral, then mark "Other" and specify type in specify box. If participant reports that
he was told that the type of pneumonia is unknown, then mark "Other" and record "Unknown" in
specify box. If participant does not know or was not told what type of pneumonia he had, then mark
"Other" and record "Don't Know" in specify box. If the participant had more than 1 episode of
pneumonia, record the month and year of the most recent diagnosis in the box in c.
1.E - Mark the circle next to each organ in which CMV was diagnosed. If in an organ other than eyes, lung or colon, mark "Other" and record the locations in the specify box. If participant does not know or was not told the location of CMV, then mark "Other" and record "Don't Know" in specify box. A serologic test, "blood" test, or "antibodies for CMV," by itself does not define CMV disease and should not be recorded.
1.G - Specify the type of lymphoma. If the lymphoma was not primary brain lymphoma or non-Hodgkin's, mark "Other" and specify in box. If participant reports that he was told that the type of lymphoma is unknown, then mark "Other" and record "Unknown" in specify box. If participant does not know or was not told what type of lymphoma he has, then mark "Other" and record "Don't Know" in specify box.
1.L - Ask whether the tuberculosis, or TB, was diagnosed in the lungs or outside the lungs. Mark the appropriate circle. If participant does not know or was not told the location of TB, leave blank.
A box that asks for the name and address of the physician who diagnosed the condition(s) is provided to assist
in the abstraction of medical records
This question refers to CD4 testing. If the participant was told his T-cell results from his last visit
subsequent to his visit (telephone, mail, or in-person), this contact is considered part of the last visit.
If this was the only time the participant was informed about low CD4+ T-cells, then mark "No."
Do not code symptoms or other non-AIDS, HIV-related conditions such as thrush or oral hairy leukoplakia.
These will be recorded in later questions. Specify each diagnosis.
Specify the site and type of cancer. Cancer coding lists (Appendix 1) will be used to code this information. br>
Question 5: Hospitalization
These questions refer to staying "overnight" or being admitted to the hospital. It does not include visits
to the emergency room or hospital-based clinics for acute care.
5.B - Start with the most recent hospitalization; i.e., the one closest to the current date, and then
the one before that, etc.
Record the conditions or problems resulting in the hospitalizations. If AIDS-related, go to Q.6 and code
where appropriate. If participant had reported being diagnosed with an AIDS condition (Q.1) or cancer (Q.4),
but did not report a hospitalization, ask participant if he had to be hospitalized for the condition and record.
Questions 6 and 7:
Mental health professional may be a psychiatrist, psychologist, social worker or other health care provider
in mental health setting. Please note that a medical release does not need to be obtained if the participant
answers "yes" to Question 6.
7.B – Two examples for coding participant X are:
If X's siblings and parents do not have diabetes, but he is unsure about his
grandparents then code "Don't Know"
If participant was diagnosed with cancer ("Yes" to Q.4) and responds that he did not have a biopsy,
refer back to the cancer and re-ask the question. Record all sites which were biopsied and the diagnoses
which were made. Make sure to include the date of the biopsy. These responses will be coded later (Appendices
2 and 3).
If the participant does not know if the PPD was positive, do not leave blank. Ask if physician told participant
it was positive or if further testing was performed. If no to the above, then mark "No." Default is "No".
11.K - This question captures ALL avascular necroses, including hip necrosis.
11.L – If participant did not have arthritis, mark "No" and leave specific types blank. If participant
had arthritis, mark "Yes" and ask each of the types. Mark "Yes" for the type(s) that he had and
"No" for the ones he did not have. If the participant specifies another type of arthritis ("Other"),
mark "Yes" and record in the participant's own words.
11.M - If participant did not have any kind of hepatitis, mark "No" and leave specific types blank.
If participant had hepatitis, mark "Yes" and ask each of the types. Mark "Yes" for the type(s)
that he had and "No" for the ones he did not have. At least one needs to be specified if participant had
hepatitis. If the participant does not know the type of hepatitis, mark "Yes" next to "Didn't say which
kind it was" and mark the other types as "No". If the participant specifies another type of hepatitis
("Other"), mark "Yes" and record in the participant's own words. Probe how the diagnosis was made.
This type should be reviewed by the coordinator for possible recoding. If the "other" response does not
represent a recognizable hepatitis type, then the "didn't say which kind" should be marked "Yes."
11.O – If the participant answers "yes" to being diagnosed with liver disease, then a medical release must be obtained. A participant reporting hepatitis does not necessarily have liver disease. Liver disease is a late stage outcome for hepatitis. However if the participant reports liver cancer, liver disease should be marked "yes." Liver disease should be reported to CAMACS on an Outcome Reporting Form.
11.P - If participant had a neurological examination, the question of whether a diagnosis was made needs
to be answered. If there was a diagnosis, record the diagnosis in the specify box. The response is to be coded
later (Appendix 4).
11.Q - If participant had been to a medical care provider for any other condition (other than conditions
previously asked in Q.1-11), the question of whether a diagnosis was made needs to be answered. If this is yes,
the following question that asks if this is a new diagnosis must be answered. When the diagnosis is new it should
be recorded in the specify boxes. Coding will be performed later using ICD-9 codes. If there were more than 3
diagnoses, mark the bubble at the end of the questions and record the additional conditions in the box.
Each item in Q.12.A needs to be completed. If participant reports any type of herpes simplex ("Yes" to any item
in 12.A), B and C need to be answered.
Items A, B, F-I need to be completed. If participant reports having gonorrhea, complete items C - E.
14.A - Complete all items. For each "Yes" in a, complete b, c and d. If the condition is new, i.e., first occurrence was since the participant's last visit, complete e.
14.A.14 - Record the symptom in the specify box. If the symptom falls into any of the categories in 1-10,
14.B - Ask participant each question. For each "Yes" ask them to indicate the severity on a scale of 0 (none) to 10 (severe) for each side. Example: if the participant experienced a level of pain around 7 in his left foot/leg, then code "0" for the right and "7" for the left.
15.A - If participant never smoked cigarettes, mark "No" and go to Q.16.
15.B & C - If participant currently smokes cigarettes ("Yes" to Q.15.B), ask Q.15.C.
If participant does not currently smoke or only smokes occasionally, skip Q.15.C.
Mark only 1 bubble in Q.16.A. If participant did not drink alcoholic beverages since his last visit, skip Q.16.B.
If the participant answers "no" to part A, indicating he has not had a drug resistance test, then skip to Q18.
However, if he has had the test, continue with parts B and C. For part C, if his treatment has changed, but his
doctor did not indicate the reason(s) for a change in therapy, then mark "Don't know."
Question 18: AIDS Medications
Question 18 refers only to medications used to fight AIDS, HIV, opportunistic infections or stimulate the immune
system. Medications that appear on the drug lists but were used for other health reasons should not have a
corresponding drug form completed. If participant is not taking any drugs for HIV, AIDS or opportunistic infections,
skip to Q. 19.
18.A - Give the participant the current LIST 1 for Q.18.A. If the participant has problems with his
vision, read the list of medications. Mark each drug the participant responds to with a "Yes" by filling
in the corresponding bubble. The listing on the questionnaire is not complete. However, it does contain currently
used medications to the best of our knowledge. Refer to the complete drug lists. This list is updated every six
For EACH drug reported, complete a DRUG FORM 1. Multiple drugs per bubble on the list refer to
blinded clinical trials only, where the participant does not know whether he is taking a placebo or
the actual drug(s) listed. If the participant is alternating antiretrovirals, is unblinded to treatment in
a trial, or is taking multiple antiretrovirals on the same day, mark each drug and complete a separate DRUG FORM 1
for each medication.
EXAMPLES for Participant "X":
1) X is taking AZT, 3TC and Indinavir. Bubble AZT, 3TC and Indinavir; complete a
separate Drug Form 1 for each drug.
2) X is in an AZT/3TC/nevirapine blinded trial, but he does not know whether he is
taking 3TC or a placebo (i.e. he is blinded to the treatment). Bubble AZT, 3TC and nevirapine. Complete a
separate Drug Form 1 for each drug. The Drug Form 1 for 3TC will only include Q1.
3) X is in an AZT/3TC/protease inhibitor trial, but he knows that he is taking AZT,
ddI, and a protease inhibitor rather than a placebo (i.e., he is unblinded to the treatment.) Bubble AZT,
ddI, and the name of the protease inhibitor and complete a separate Drug Form 1 for each drug (i.e. 3 drug forms)
For any other anti-viral medication used by the participant against HIV-1 but is not on the list, mark "Other
anti-viral" and record drug in box along with the drug code. Check AIDS MEDICATIONS LIST 2 to
see if it is on this list. If so, record in 18.B. Else, complete a DRUG FORM 1. Bring this to the
attention of clinic coordinator/director. If the drug is not on the coding list, the center's director should
contact the coordinator at CAMACS.
18.A.3 - This question assesses whether the patient took a break of at least 2 consecutive days from his
antiretroviral medications, and if so, for how long. It also captures how many times they missed and if any of
the breaks were prescribed by a physician. If a participant missed at least 2 consecutive days of all prescribed
antiretroviral therapy at three different times, but only one of those times was prescribed by a physician, the
response to this question would be "Both." If the participant had multiple lapses in therapy use, ask
them to report the length of the most recent one.
18.B - Give the participant LIST 2 for Q.18.B. If the participant has problems with his vision,
read list of medications. Record each drug participant responds to with a "Yes" in coding boxes 1-12.
For EACH drug reported, complete a DRUG FORM 2.
18.C - This question should be used to record medications used against HIV, AIDS and opportunistic infections
not listed in A or B. Be sure to check Drug Lists 1 and 2 for a code before recording it in this section. The
actual name of the drug should be written in the specify box. However, these medications will be coded by their
function. Since many of these drugs are multi-functional, ask the participant specifically why he is taking the
medication and include this in the specify box. Maintain log of written responses. Note that if the participant
indicates he is taking Acyclovir as part of his HIV antiviral regimen, then it should be coded here as 527 (other
Question 19: Other Medications
This question should be used to record medications, other than those against HIV and AIDS, which are prescribed by
a physician. Record the name of the drug in b. If unsure about the spelling, ask the participant. Maintain a log
of written responses.
19.9 - Acyclovir prescribed for herpes should be recorded here. If the participant responds "Yes,"
he should answer no/yes for chronic and episodic herpes. If the patient claims that he is taking Acyclovir
as part of his HIV antiviral therapy, then it should be coded in Q18.C (other medications) as 527.
19.10 - Record any cholesterol or lipid lowering or diabetic medications. The cholestrol and lipid lowering meds are part of the 800 series while the diabetic meds are in the 900s. The following codes have been added for visit 35:
810= Colestid (Colestipol)
19.11 - Record other medications used since the participant's last visit in b, with the reason for its use.
A vaccine against HIV-1 can include vaccines which prevent infection with HIV or therapeutic vaccines (those
which prevent progression of the infection.)
Question 21 has been deleted.
May be skipped if participant has AIDS (local option).
Question 22 Box:
Do not code interviewer's instruction.
If the participant had any sexual activity ("Yes" to Q.22.A), B and/or C must be "Yes."
If participant only had sexual activity with another man, mark "Exclusively homosexual" and read
definition of intercourse.
If participant only had sexual activity with a woman, mark "Exclusively heterosexual" and read
definition of intercourse.
If participant had sexual activity with men and women, mark "All others" and read definition of intercourse.
For A, B and C, if response is 1000 partners or more, code "999".
If the participant was exclusively heterosexual go to Q.26.
Question 24 has been deleted.
If participant had only 1 male partner (sum of Q.23.A and Q.23.B = 1), use column a; b should be blank for all items. If he had more than 1 partner (sum of Q.23.A and Q.23.B > 1), use column b; a should be blank for all items. For column b, if the participant reports 1000 partners or more, code as "999".
If Q.23.A = 0, then only complete item 1. All other items should be left blank.
If participant responds as not engaging in any of the behaviors described in subquestions 2 – 11, but did
report at least 1 intercourse partner, refer back to the intercourse question, read the definition of intercourse
and re-ask subquestions 2 – 11.
25.2 - If this is "No" (single partner) or "0" (multiple partners), do not ask item 3.
25.4 - If no anal insertive intercourse ("No" if 1 partner, "0" if multiple partners), do not ask
25.6 - If this is "No" (single partner) or "0" (multiple partners), do not ask item 7.
25.8 - If no anal receptive intercourse ("No" if 1 partner, "0" if multiple partners), do
not ask item 9 in this question; instead, go to Q.26.
Question 26: Recreational Drugs
Needle use of drug could be intravenous, intradermal or intramuscular use. For other kinds of drugs, ask the
participant for specific name. If given a slang name, ask if known by other name. Record both the slang name
and other name in same specify box. These will be coded using codes in Appendix 5.
Question 27: Health Insurance
HMO is a health maintenance organization, such as Kaiser Permanente, Harvard Health, Prudential HMO.
If privately insured through their employment and not by an HMO, it is group private insurance.
If "Other" (Item 8) type of medical coverage, probe to see if purchased individually or as part of a group.
At least try to see if private insurance. Specify name and whether private insurance in box. It may be coded as
"3" for private but unknown whether it's individual or group. A "PPO" written in "Other"
should be coded under "Private, Group coverage."
Examples of typical responses under "Other" and their correct reclassification:
|COBRA|| OTHER = 3 (this means the participant has private
insurance but we don't know if it's group private or individual private)
|Major Medical||OTHER = 3|
|Employer||OTHER = 3|
|Crisis insurance||OTHER = 3|
|Hospitalization||OTHER = 3|
|Catastrophic policy||OTHER = 3|
|Self-insurance||GPIC (group private insurance)|
|Military||VABEN (Veteran's Administration/Armed Forces coverage)|
|Medigap||MCARE (Medicare) and OTHER = 3|
If participant does not have health insurance, "No" is answered for each item, confirm and then go
27.B – This question captures those participants that have any form of medication coverage,
even if they do not have other medical coverage. If the participant answers no to all of the responses
in part A and B, then they should skip to Q31, otherwise they should continue with question 28.
Question 28: Change of Insurance
Do not ask this question if the participant did not have any health insurance since his last visit.
If participant did not change his insurance coverage, do not ask B-D. This question is trying to
assess what factors contributed to the patient's health plan change. If the participant dropped
his own insurance to become insured through his partner, we would like to know the main reasons that
influenced him to take this action. The interviewers should not accept the answer of "I wanted to
change to my partner's plan." They should ask the participants why they dropped their former coverage.
28.C - Each item should be asked and responded with a "No" or "Yes." If "Yes" to
only 1 item, go to Q.29.
28.D - Only to be answered if more than 1 "Yes" to Q.28.C. Only accept one response as the
primary reason. If the participant states more than one, restate the question, asking the participant
for 1 primary reason.
Do not ask if participant did not have any health insurance since his last visit or if participant is not
currently insured. Similar to question 28, this question is trying to assess what factors contributed to
the patient's health plan change. If the participant chose his new insurance through his partner, we would
like to know the main reasons that influenced him to take this action. The interviewers should not accept
the answer of "I wanted to change to my partner's plan." They should ask the participants why they chose
this new insurance plan.
For all others, ask each item and mark either "No" or "Yes." If "Yes" to only 1 reason,
skip B and go to Q.30.
29.B - Only to be answered if more than 1 "Yes" to Q.29.A. Only accept one response as the
primary reason. If the participant states more than one, restate the question, asking the participant for 1
Do not ask if participant did not have any health insurance since his last visit or if participant is not
Allow the participant to answer with a number from 1 to 7. Mark the circle next to the responded number.
It is not required for participant to have used his coverage to rate his satisfaction.
If none of the items apply, be specific when recording other source of usual medical care in box. Keep log
of written responses. If participant replies with more than 1 source, state that you will ask where he went
but here you need to know the 1 place where he usually goes for medical care. See instructions for Q.33 for
further probing and classification.
Outpatient medical care does not include hospital admissions. Clinics within hospitals should be recorded
When a participant responds that he has gone to a specialist, this should be marked as doctor (DOCOV), e.g.,
allergist, eye doctor, dermatologist, neurologist.
Whenever a participant says he has been to the lab, the interviewer should probe to see if the lab work had
been conducted as part of another doctor's or clinic visit. If so, then it can just be marked as the one
doctor's visit. However, if it is a separate visit or location (even on the same day) then it should be
marked as "OTHER." When recoding (i.e., it's too late to probe), it should remain as "OTHER."
Miscellaneous services are appropriate for the other category, including chemotherapy, pentamidine, physical therapy.
If a participant says "VA," the interviewer should probe as to whether this was a visit to the participant's
own doctor there or if it was a clinic appointment. Absent this information, recode it as any clinic (CLOV).
Otherwise, examples of coding:
Question 34 has been deleted.
Out-of-pocket expenses include any charges not paid for by insurance such as deductibles, co-payments,
charges above the allowable limits or costs of services not covered by insurance. These expenses refer
to the amount that was paid, not how much may still be owed. Round to the nearest dollar. If total
expenses were less than $1, code as "0."
If the participant responds with "Don't know," ask participant to make his best estimate. If
he still doesn't know, than mark the bubble next to "Don't Know." If the participant doesn't
wish to answer the question, mark "Refused."
Question 37 has been deleted.
38.A - If the participant responds "NO," they DID NOT not seek care or obtain prescriptions they thought they needed, skip to Q39. If the participant responds "YES," they DID not seek care or obtain prescriptions they needed, skip to Q38.B.
38.B(1) - Record in participant's own words reason for not seeking medical care if other than financial. Maintain log of written responses.
38.B(2) - Record in participant's own words reason for not seeking dental care if other than financial. Maintain log of written responses.
38.B(3) - Record in participant's own words reason for not obtaining prescription medications if other than financial. Maintain log of written responses.
If the participant changed employment because of HIV, ask each item and record "No" or "Yes"
response. If all items 1-7 are "No," record participant's reason in specify box.
Mark "Yes" if interview is being conducted over the telephone, else mark "No."
Mark "Yes" if interview is being conducted in the participant's home. Other interviews conducted
off-site such as in physician's office or hospital are considered "Home visit" and accordingly, should
be marked "Yes."
PWA interview should be marked "Yes" if the participant has ever been diagnosed with a clinical
AIDS diagnosis. A CD4 number less than 200 or CD4 percent less than 14 without a clinical AIDS diagnosis
should be marked "No."
Sign your name and record the number assigned to you.
Appendix 1: Cancer Site Codes
1400 Oral/Pharynx (not otherwise specified) (NOS)
Appendix 2: Tissue Biopsy Site
01 = Adrenals
Appendix 3: Diagnosis of Tissue
0 = Don't know
Appendix 4: Neurological Condition
100 = HIV cran neur
Appendix 5: Street Drug