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The ADHERE Project focused on taking a patient-centered perspective on factors that either
enhanced or hindered an individuals ability to attain desired levels of adherence to
antiretroviral therapy, and to participate in treatment programs over the long-haul. The work
focused first on the development and testing of a data collection instrument that could
provide information about patient experience in taking medication for HIV infection,
beginning with the issue of how disclosure of HIV related to adherence. The instrument was
to draw on methods of study that focus on the participant in order to capture the complex
experiences of patients with ART, their treatment supporters, and health care providers
(HCPs). The instrument would be used to generate data to inform programme managers about
the strengths and weaknesses of their ART adherence support services in an effort to assist in
programme improvement. A first round of data collection took place among patients
attending one urban hospital in Durban.
In a second round of data collection in five sites operated by the provincial government of
KwaZulu-Natal, MEASURE Evaluation expanded the goals of the research to include not
only the formulation of an instrument to collect information about the ART programme, but
also to better understand patient experiences in taking antiretrovirals (ARVs). Interest in
disclosure remained, but disclosure became one of a number of topics of interest. Therefore,
in this second round of research just completed, ADHERE had both a methodological and a
strategic objective. The methodological objective was to develop an instrument that could be
used by health care facilities directed by the Department of Health to collect information on
programme operation related to patients taking ARVs. The strategic objective of ADHERE
was to understand the strategies that patients develop in order to achieve high adherence.
Some strategies fail while others succeed, and this study was interested in any strategy that
patients have tried for maintaining adherence.
This study is qualitative in that it collected narratives of patient experiences in taking ARVs
and examined the social context of taking ARVs. The research also included semi-structured
interviews with HCPs who provided ART services. The study was designed and implemented
to understand how ART patients managed to remain on ARVs for a long period of time, as
well as how and why some patients miss doses from time to time and still others stop
altogether. The results identify the information most essential to understanding how well an
ART programme is functioning and ways in which it could be improved.
Methods
This research relied largely on individual interviews with ART patients to provide the
information necessary for achieving the study objectives. Individual interviews with HCPs
working in ART programmes were also conducted to add another perspective on ART
service delivery and patient experiences. The study interviewed patients and HCPs in five
sites in five of the 11 districts of KwaZulu-Natal. Each site was a government hospital that
had initiated ART services in 2004.
The target sample for ART patients was a total of 180 ART patients from the five sites: 60
without a tuberculosis (TB) history, 60 with a TB history, and 60 who had missed two or
more appointments for collection of medications. The latter were considered dropouts. The
two research assistants (RAs) at each site had a quota for each category of patients to
interview in order to arrive at a total of 36 patients per site. The target sample for HCPs was
six ART staff at each facility. The study came very close to reaching the numbers targeted.
Study Findings
Health care providers understand that patients remind themselves to take their medicines with
cell phones, watches and alarm clocks, and with the help of treatment supporters. Most HCPs
agree that there are two keys to high adherence: having a committed and informed treatment
supporter, and disclosing to people who know the patient. HCPs suggested that the patients
who tend to default were those who had been in the treatment for a long period, or those who
found they were feeling much better. Their explanations for how and why patients stop taking
their ARVs focused on the social and economic problems patients face.
The HCPs interviewed emphasized five main issues to be addressed for overall programme
improvement: severe shortage of space, insufficient numbers of staff, the ambiguities around
the administration and distribution of disability grants, the need for more detailed and more
accurate information about patients in their programme, and the need to trace patients quickly
who miss appointments. The instrument developed by this study responds to the last two
concerns of HCPs.
The five research sites followed the same policy for getting people tested and enrolled in their
ART programme. Individuals who tested HIV-positive are asked to come for further blood
tests to assess their CD4 count and viral loads. They are then invited to join an ART
programme if their CD4 count is below 200. Enrolment involves attending three sessions of
training classes accompanied by a treatment supporter, a person who lives in the same
household and who is able to remind and counsel the ART patient. In the ART classes,
informants learned about the different kinds of pills that they would be taking as well as how
and when they were to take them.
This study interviewed a sample of three types of ART patients in the five research sites:
those who had never had TB, those who had had TB in the past, and those who had dropped
out of an ART programme for at least two months. ART patients with a TB history were
treated as a separate group to explore whether they had benefited from adhering to a TB
treatment regimen in their adherence to ART. The study did not find evidence to support this
expectation.
Many patients in all three groups experienced financial problems: problems in obtaining
appropriate food and paying for transportation to the facility to pick up medication. About
half of patients without a TB history were employed, somewhat less than half of those with a
TB history, and about one-fifth of those who had dropped out were employed. Nearly one-
third of all patients had benefited at some point from a government grant of some kind.
Patients in the three groups all used the same strategy for reminding themselves of when to
take their medication: cell phone alarms, alarm clocks, and radio and TV programmes. Some
patients had a family member remind them as well. About half of those interviewed said they
never missed a dose. Most patients disclosed to at least one family member. Individuals still
in an ART programme had managed to deal with their side effects.
Patients who stopped taking their ARVs (dropouts) were particularly vulnerable both socially
and economically. That is, very few of them had an adequate and dependable source of
income, and they had few sources of social support. Some informants reported they had
stopped taking their ARVS when their disability grant ended they had become dependent on
the grant for their income. One-fourth of dropouts interviewed cited side effects as their
major reason for no longer taking ARVs. Others dropped out because they lacked the
resources needed to eat well and make their monthly pickup of drugs. Individuals in this
group had stopped taking their ARVs for between 2 and 30 months.
The findings indicate that achieving high adherence judged by not missing doses depends less
on a particular strategy for remembering when to take ARVs than on how that strategy is
maintained within a household. They suggest that ART programmes should examine how
individuals are situated within their household in considering the assistance patients need to
maintain high adherence.
Systematic Data Collection for Programme Improvement
One of the objectives of this study was to produce an instrument that can be used to collect
data on factors that impact adherence in ART programmes. Such an instrument needed to be
narrowly focused, simple and easy to use by personnel with minimal experience in research,
and cannot require many additional resources. Ideally, it should build on what HCPs and
patients are already doing. It should also focus on the factors that most affect adherence. The
topic guide used for this study provided rich data on patient strategies for taking ARVs and
on their own circumstances that affected adherence, and has allowed us to identify the issues
most critical in maintaining adherence. However, not all topics in this larger instrument are
needed in the patient assessment form to be used for monitoring patients over time.
The data collection instrument developed by this study builds directly on the main findings.
The findings from ART patients as well as from HCPs indicate that adherence is most
contingent on the following: having a treatment supporter who attends classes with the
patient dealing with side effects and a household situation that includes an income adequate
for providing food and transportation expenses. A treatment supporter should not only remind
patients to take their ARVs, but also discuss changes necessary in life style. While the
majority of ART patients were able to deal with side effects eventually, one-fourth of those
who dropped out stated that side effects were the primary reason they stopped. The lack of
resources for food and transport was often cited as a factor that made adherence difficult.
Having identified the factors that most affect adherence and retention in ART programmes
(treatment supporter, side effects, household income), the study has formulated an instrument
for use in monitoring ART patients over time with regard mainly to these factors. This
instrument can be used periodically to assess the situation of patients and provide valuable
information on how well patients are doing and what assistance they most require. This
instrumenta one-page form for recording informationappears in this report as
Appendix D: Assessment of Patient Situation. It has been reviewed by the Department of
Health of KZN.
The topics in the assessment of patients derive from parts of the larger instrument, or topic
guide, used in this study. The responses will be recorded on one page as a check list with
space for notes. This patient assessment form can be used to generate an overall assessment
of a patients situation periodically. The form is designed to be used right after a patient has
completed ART classes, and the assessment would become part of the patients file. The
assessment will show areas where patients might encounter problems with adherence.
However, the situation of households changes over time as individuals find or lose jobs or
grants, and the health status of patients also changes over time. Therefore, counsellors can
use this form for doing an assessment every three months with their patients.
Through conversations with about 200 individuals (patients and HCPs) about ART
programmes in which they had participated, the study has been able to identify aspects of
taking ARVs that patients find most troubling. Those topics are addressed in the instrument
for periodic collection of information about patient experiences in taking ARVs to anticipate
problems in taking doses on time and remaining in a programme. |
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