Collection of adherence data
June 11, 2012
Adherence data
Document for discussion by EuroCoord WP4 Task 4.1, COHERE, ART-CC
Among cohorts contributing to ART-CC, 2 types of adherence data are collected: prescription
refill data and self-report data.
If available, it would be useful to collect both types of adherence data in order to compare the
2 measures.
 The prescription refill data is already standardised and is long format data for each
patient. The following variables should be collected:
ID: Patient identifier
date: date of the prescription refill
drug_name: drug which was prescribed
days_supply: how many days supply of the drug was supplied?
For example:
ID
date
drug_name
days_supply
2110 05 Jan 05 COMBIVIR 300MG/150MG TAB 10
2110 05 Jan 05 VIRAMUNE 200MG TAB
10
2110 31 Jan 05 COMBIVIR 300MG/150MG TAB 90
2110 31 Jan 05 VIRAMUNE 200MG TAB
90
2110 29 Jun 05 COMBIVIR 300MG/150MG TAB 90
2110 29 Jun 05 VIRAMUNE 200MG TAB
90
Collection of these variables then gives flexibility around how to define adherence for
different analyses.
 The self-report data is more problematic and varies over cohorts.
Each cohort has a different way of collecting self-reported adherence data – it certainly
differs over the 3 cohorts that have supplied self-report data. The US cohorts are quite similar
to each other, but there are still differences between them.
Questions are asked regarding different time frames, and also the options for answers are
different – some of based on number of doses missed and some are based on number of days
a dose of medication was missed.
US cohorts ask if adherence is related to weekends/vacations/paydays.
If cohorts already collect self-report data, there will be no easy way to standardise the
reporting through a HICDEP format and therefore cohorts should be left free to enter data as
collected.
However, we suggest that the SHCS example could be used as a basic format for self-report
data for cohorts introducing collection of adherence data.
SHCS collects the following self-report data
Variable name
EXTERNAL_ID
AD_DATE
MISSED
Description
ART-CC ID number
Date of the adherence questionnaire
How often was a dose of ART missed in the last 4 weeks?
IN_ROW
Did you miss more than one dose in a row in the last 4 weeks?
Format
ddMONyyyy
A=every day
B=more than 1/week
C=once a week
D=once every two weeks
E=once a month
F=never
0=No
1=Yes
missing
Collection of adherence data
June 11, 2012
For completeness, here are the formats used by Washington (and other CNICS cohorts) and
VACS.
Washington
Question
How many doses of your medications did you miss in the last 4 days?
Did you miss any of your medication last weekend - last Saturday or Sunday?
When was the last time you missed any of your medications?
How many doses of your medications did you miss in the last 7 days?
How many doses of your medication did you miss in the last 14 days?
How many doses of your medication did you miss in the last 30 days?
How many doses of your medication did you miss in the last 60 days?
Values
>4
4
3
2
1
0
Yes/No
in the past week
1-2 weeks ago
2-4 weeks ago
1-3 months ago
more than 3 months ago
never skip medications
>4
4
3
2
1
0
>15
11 to 15
9 to 10
7 to 8
6 to 7
4 to 5
2 to 3
1
0
>15
11 to 15
9 to 10
7 to 8
6 to 7
4 to 5
2 to 3
1
0
>15
11 to 15
9 to 10
7 to 8
6 to 7
4 to 5
2 to 3
1
0
Collection of adherence data
Over the past 3 months, how many days have you not taken any medicine at all?
In the past 4 weeks, how was your ability to take all of your anti-HIV medication?
Mark the point along the line that most closely reflects how much of your HIV medication?
June 11, 2012
>15
11 to 15
9 to 10
7 to 8
6 to 7
4 to 5
2 to 3
1
0
Very poor
Poor
Fair
Good
Very good
Excellent
Range 0-100
VACS baseline questions
102. During the past 4 days, on how many days have you missed taking any of your doses?
0 NONE
0 ONE DAY
0 TWO DAYS
0 THREE DAYS
0 FOUR DAYS
103. Most anti-HIV medications need to be taken on a schedule, such as "2 times a day," or
"3 times a day," or "every 8 hours." How closely did you follow your specific schedule over
the last four days?
0 NEVER
0 SOME OF THE TIME
0 ABOUT HALF OF THE TIME
0 MOST OF THE TIME
0 ALL OF THE TIME
104. Did you miss any of your anti-HIV medication last weekend--last Saturday or Sunday?
0 YES
0 NO
105. When was the last time you missed any of your HIV medications? WITHIN THE PAST
WEEK
0 1 - 2 WEEKS AGO
0 2 - 4 WEEKS AGO
0 1 - 3 MONTHS AGO
0 OVER 3 MONTHS AGO
0 NEVER SKIPPED
Please fill in the oval of the one response that best describes how you take your
medications.
63. In the past 12 months, when you take your HIV medications, how often do you take
all the medications you're supposed to?
0 NEVER
0 SOME OF THE TIME
0 ABOUT HALF OF THE TIME
0 MOST OF THE TIME
0 ALL OF THE TIME
Collection of adherence data
June 11, 2012
64. In the past 12 months, is there a particular medication that you are more likely to
miss than the others?
0 YES
If yes, do any of these reasons explain why?
0 NO
YES
NO
I have to take it at an inconvenient time
0
0
I have to worry about taking it with or without food
0
0
I don't like the side effects
0
0
The pill is hard to swallow or tastes bad
0
0
65. Do you ever stop taking your medications for a while or take a "drug holiday" that was
not recommended by your doctor?
0 NEVER
0 LESS THAN MONTHLY
0 MONTHLY
0 WEEKLY
0 MORE THAN WEEKLY
If you do stop taking your medications for a while,
A. How often is this something you do on purpose?
0
0
0
0
0
NEVER
SOME OF THE TIME
ABOUT HALF OF THE TIME
MOST OF THE TIME
ALL OF THE TIME
B. How long does it last for?
0
0
0
0
0
2 DAYS
3 OR 4 DAYS
BETWEEN 5 AND 7 DAYS
BETWEEN 1 WEEK AND 1 MONTH
MORE THAN 1 MONTH
C. Does it tend to occur around the following times?
WEEKENDS:
0
0
0
0
NEVER
SOME OF THE TIME
ABOUT HALF OF THE TIME
MOST OF THE TIME
VACATIONS:
0
0
0
0
NEVER
SOME OF THE TIME
ABOUT HALF OF THE TIME
MOST OF THE TIME
Collection of adherence data
0
ALL OF THE TIME
June 11, 2012
0
ALL OF THE TIME
PAYDAYS (WHEN YOU RECEIVE EMPLOYER OR GOVERNMENT CHECKS):
0
0
0
0
0
NEVER
SOME OF THE TIME
ABOUT HALF OF THE TIME
MOST OF THE TIME
ALL OF THE TIME
**********************************************************************************
FU5
92. For some people it is difficult to always take medications as the doctor prescribes.
Thinking back on the last month, on average how would you rate your ability to take
ALL of your HIV medications as your doctor prescribed them?
0
0
0
EXCELLENT
VERY GOOD
GOOD
0
0
0
FAIR
POOR
VERY POOR