Transcript challenges to ARV adherence in three African countries

On hunger, transport costs and waiting time:
challenges to ARV adherence in
three African countries
Richard Laing, PSM/PAR
Robert Ogenyi, Botswana
Authors
Anita Hardon, Dorothy Akurut Aurugai, Christopher Comoro, Cosmas
Ekezie, Henry Irunde, Trudie Gerrits, Catherine Hodgkin, Joyce
Kglatwane, John Kinsman, Richard Kwasa, Janneth Maridadi, Alice
Nakiyemba, Stephen E.D. Nsibmba, Robert Ogenyi, Thomas Oyabba,
Florence Temu, Richard Laing
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Overview of ART in Botswana, Tanzania,
and Uganda
Country
Population
size
Estimated
adult HIV
prevalence
Number of
treatment
sites
Number of
PLWA in
need of
treatment
Estimated
percentage
treated as of
December
2005*
Botswana
1.8M
24%
32
84 000
85%
Tanzania
37 million
6.5%
44
315 000
7%
Uganda
25 million
6.7%
175
148 000
51%
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Methods
 Semi-structured interviews (SSIs) with ARV
users, health workers and key informants
 Focus group discussions (FGDs) with ARV users
and key informants
 Adherence interviews with ARV users (tools
Botswana & Tanzania: two-day self-report recall,
one-month visual analogue, pharmacy pill counts)
 Exit interviews and observations
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Sample Size
Number
of
facilities
SSIs with
health
staff
SSIs in
community
No. of
adherence
interviews
with ARV
users
No. of
focus
group
discussions
No. of
exit
interviews
Botswana
four regions
4 public
16
23
514
16
163
Tanzania
(Arusha and
Dar es
Salaam)
3 public
4 private
28
30
107
8
70
Uganda
(Jinja only)
1 public
1 private
10
20
71
10
20
SSI: semi-structured interview
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Quantitative results: adherence estimates
Two-day recall
One-month
visual
analogue
One-month pill
count
Botswana
98% (n=508)
92% (n=496)
93% (n=443)
Tanzania
100% (n=107)
83% (n=107)
98% (n=107)
Average percentage of doses taken at the right time in the study
population, by adherence measurement instrument
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Quantitative results: adherence estimates
– optimal level adherence 95%+
Botswana
Two-day
recall
One-month
visual analogue
Onemonth
pill count
96% (n=508)
60% (n=496)
93%
(n=443)
Percentage of respondents with optimal ARV adherence rates (at
least 95%), by adherence measurement instrument
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Reasons reported for missing medication
Reason
Nr of ART users
reporting this reason
% of ART users
reporting the
reason
Simply forgot
90
17.5
Logistics and transport costs
67
13
Work or home duties
61
11.8
Stigma
36
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Lack of care/support
18
3.5
Misunderstood instructions
16
3.1
Lack of food
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2.1
Distance to the health facility
10
1.9
Being in hospital
9
1.7
Alcohol abuse
9
1.7
Depressed
6
1.2
Feeling better
3
0.6
Pill burden
3
0.6
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Qualitative results: what are the
constraints to optimal adherence
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Transport costs
User fees
Waiting times
Hunger
Stigma
Side-effects
Lack of counselling
Heavy workloads
Lack of space for confidential consultations
Lack of CD4 machines and ARV stock-outs
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Transport costs
“I have very many people in the village, they are dying because they don’t
have money to transport themselves to the hospital. You need to have
this money monthly. And getting that money is a problem. So maybe,
like people in Kyoga, if they can send that drug up to Kyoga, I think
that could be good. Right now only Lira Referral Hospital gives ARVs,
and that is 130 kilometres from our place (Kyoga). Very far!” (ARV
user, Uganda)
“I once missed my appointment for refill because there were no vehicles
coming here. I was in the stop from early morning and by noon I went
back home. Fortunately I still had some medications.” (Male ARV user,
Botswana).
“I was registered to start ART in Kilimanjaro Christian Medical Centre
(KCMC) in Moshi a year ago. At that time there was no ART clinic
near my village. Now there is a clinic near my home but I am denied
transfer from KCMC to my home clinic. KCMC is very far from here,
about 170 km away. Some times I do not have the fare to travel to
KCMC, hence I miss my doses.” (Male ARV user, Tanzania).
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Waiting times
In all three studies, the problem of long waiting times was cited as a
major challenge to adherence.

In Tanzania, the mean time spent at the clinic was six hours.

In Botswana, most respondents reported that they spent around
four hours at the clinic.

In Uganda, the average waiting time for ARV users was five hours in
the public facility and one hour in the private facility.
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Hunger
“The problem I have with ARVs is related to food. I have no
money and ARVs increase appetite. I am not capable of
buying food.” (Male ARV user, Tanzania)
“Majority of people say the ARV treatment makes them to eat
a lot. They go to an extent of begging for old age pension
from their grand parents. Others quit the treatment
because they complain about the lack of food.” (FGD
participant, Botswana)
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Stigma
Some examples:
Job loss (Tanzania)
Abandonment or badly treated by partners (Botswana)
Isolated by community members (Uganda)
Fearing such stigmatization, ARV users often decide to hide
their HIV status.
“I cannot take my drugs when people are seeing. I always go and
hide when I take them. Otherwise, people start whispering
about you all the time.” (ARV user, female FGD, Uganda)
“I usually miss my medications when I visit friends because I
have not told them about my HIV and so I do not want them
to see my medications.” (Male ARV user, Botswana)
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Side-effects
“I had side-effects and decided to take medication only once
per day.” (Male FGD, Tanzania)
“Feeling a lot of heat in the body, especially after taking the
drug and excess sweating makes one embarrassed in public.
So, you feel like postponing the drug to a later time when
you are not relating with people.” (Male ARV user, Uganda)
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Lack of counselling .. And heavy
workloads
“You find 25 patients and only one person attending all these
patients and he just tells you to go and collect your
medication." (Male FGD participant, Tanzania)
“You overwork like this without even a break because there are
too many people all coming one day and yet you are very
few.” (Health care worker FGD, Uganda)
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ARV stock-outs
“We are grateful for the government for bringing medicine to
the people, but we hear it is only for five years. Whenever I
take these drugs, I am wondering whether in the next five
years I will still have them free. Actually I get disturbed by
that." (Male ARV user, FGD, Uganda)
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Recommendations
Encourage small-scale studies using a combination of
qualitative and quantitative rapid assessment tools
(conducted by local researchers in collaboration with frontline health workers) to:
 Estimate adherence levels
 Identify factors that facilitate or constrain adherence
 Indicate possible solutions
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Recommendations 2
Emphasize the importance of treatment effectiveness and
adherence in order to ensure sustainability of current
efforts to scale up access to ART:
 Provide resources for routine use of simple measures to
monitor adherence
 Evaluate innovative adherence support measures
 Scale up adherence support measures of proven
effectiveness
Key indicators to assess national programme efforts should be:
 Percentage of ARV users continuing treatment after one
year
 Percentage of users achieving optimal adherence
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