C12 Adherence to antiretroviral therapy
Taking highly active antiretroviral therapy (HAART) is a long-term commitment which, once started, need to be continued over one’s lifetime. To achieve maximum effectiveness, people living with HIV/AIDS (PLWHA) must take all the prescribed medications regularly and almost at the same time every day. Adherence to HAART is associated with a positive response to treatment in terms of the control of HIV replication, improvement of immune functions, and reduction of the risk of HIV transmission.[Chapter C10] Clearly, adherence is important in optimising PLWHA’s response to therapy, while suboptimal adherence may result in treatment failure, a rise in plasma viral load, continued destruction of CD4+T cells and emergence of resistant HIV strains. Antiretroviral resistance, aside from causing regimen failure, could compromise future treatment options and increase the risk of HIV related morbidity and mortality.
Over the past years, there has been a huge improvement in HAART regimens. Today, HAART in use is much simplified and more potent, causes fewer side-effects, is easier to take and less likely to cause resistance. Nevertheless, barriers to treatment adherence varies between individuals, and remains one of the major concerns in achieving effective HIV care and control.
Drug adherence counselling
Health care providers play an important role in achieving HAART adherence. Counselling on preparing for HAART initiation, drug adherence and support are conducted by nurse counsellors in accordance with the established protocol, a practice adopted at all HIV treatment services in Hong Kong. A systematic and multi-disciplinary approach is essential in promoting drug adherence in PLWHA. Drug adherence counselling is preferentially integrated with other targeted risk reduction measures, which serve the purposes of sustaining the maintenance of a low HIV risk in the community. The objectives of drug adherence counselling are, to:
- provide knowledge and support to PLWHA for making appropriate choice on HIV treatment according to individual needs
- assist PLWHA to establish drug adherence behaviour
- enhance one’s ability in managing and maintaining the treatment
- create a supportive environment for facilitating the achievement of optimal drug adherence
Drug adherence counselling is a 4-stage approach [Algorithm 12] that incorporates principles of learning theory, the daily living challenges of the patient and the complexity of medical and psychosocial factors specific to HIV practice. The 4-stage approach consists of stage 1: General preparation, stage 2: Treatment initiation, stage 3: Consolidation; and stage 4: Maintenance. Drug adherence interventions integrate affective, behavioural, and cognitive strategies. Effective strategies are designed to optimise social and emotional support, to establish nurse-patient relationship and encourage communication. Behavioural strategies are designed to shape, reinforce or influence behaviour of drug adherence. Cognitive interventions are designed to teach, clarify and provide treatment information.
Throughout the process of drug adherence counselling, the counsellors work in close collaboration with doctors and medical social workers to work out strategies for helping PLWHA, overcome barriers and provide support so as to enhance adherence.
Stage 1: General preparation
This stage serves to determine treatment readiness, characterise potential and actual barriers to adherence, and provide relevant treatment knowledge and educational interventions. A trusting and caring relationship between health care provider and PLWHA have to be established in order to achieve a mutual understanding of the treatment goal. Stage One counselling is offered when a patient first attends the clinic e.g. at intake assessment. This may also be required throughout the course of disease on subsequent visits. Key issues covered at this stage are:
- Thorough assessment is performed to explore the potential and actual factors in a patient’s life that could influence drug adherence. These include health status, social background, daily living schedule, one’s perception of illness and treatment, mental illness and substance abuse
- Treatment information is provided in the same setting. Resources materials such as information booklet or drug sample box can be used to enhance the understanding of the antiretrovirals such as the nature of combination therapy, their availability, benefits and effects, and the importance of adherence.
- Ongoing assessment shall follow and should be conducted in a patient-centred and non-judgemental atmosphere, to track patient’s knowledge on the subject, the understanding of the treatment process, and evaluate one’s readiness to initiating and adhering to a complex regimen.
Stage 2: Treatment initiation
The most important time to address the importance of adherence to treatment and medication regimens is before starting therapy. The idea of ‘readiness’ for the therapy is the major consideration. Patient readiness refers to the understanding of motivation and commitment to the treatment plan. This is a challenge now that treatment is initiated very early on in accordance with the principle of Treatment-as-Prevention. Commitment to medication adherence of the patient should be assessed. Before HAART is begun, the risks and benefits of treatment must be discussed. The potential and actual factors that could influence adherence are again addressed and intervened as appropriate prior to initiation of therapy.
Regardless of CD4 count, HAART can be initiated as soon as the patient is willing with readiness for drug adherence, to improve immunologic function, reduce the morbidity and mortality associated with HIV infection and prevent HIV transmission. The key objective at this stage is to ensure that the patient understands the benefits of HAART and the possible side effects associated with the treatment. At the end of the counselling session, the patient should be able to make a self-determined choice to start therapy. Counselling shall cover the following issues:
- Assessment of factors that may influence adherence – patient’s perception of illness and desire for treatment; social stability, including such factors as housing status, regularity of life-pattern, job nature, need to travel, and behavioural risk factors like substance abuse; mental status; baseline knowledge and fear of disclosure.
- Identification of potential facilitators and barriers to drug adherence – counselling is conducted to remove such barriers, while special support system is identified that may be utilised, such as family network or NGOs.
- Development of treatment care plan which is patient-centred and tailored to daily life.
- Discussion on the planned regimen and optimal regimen for patients’ choice.
- Obtaining patient’s agreement to have HAART initiated.
At the time of treatment initiation, the objectives of counselling become even more focused by addressing the specificities of the prescribed HAART regimen. The patient shall agree on the drug dosing schedule. Patients are more likely to take HIV treatment correctly if they are involved in the decisions about when to start treatment and about which drugs to start with. The contents of the counselling are therefore:
- Assessment to check the patient’s understanding of the provided information and the importance of adherence.
- Discussion on the prescribed treatment regimen such as time and frequency of doses, side effects and their management, toxicity concerns and food restrictions.
- Development of an individualised medication schedule – assessment of one’s daily life pattern is made, followed by the establishment of a schedule for medications. A pill-planner with the mutually agreed medication schedule and drug information is given to reinforce the knowledge and memory.
- Provision of psychological support and a helpline so that the patient could reach the counsellors whenever in need.
- Scheduling patients to come back in a short interval e.g. two to three weeks later to assess drug adherence and uncover any barrier in the coming months, and reinforcing knowledge on HAART.
Stage 3: Consolidation
The initial phase of starting treatment is a critical period for establishing a patient’s confidence and his/her adoption of a drug taking behaviour. There may be unfamiliarity with the treatment schedule and encountering of adverse effects such as gastrointestinal upset, tiredness and central nervous system symptoms. Support from attending healthcare workers is important for enhancing patients’ drug adherence and their management of adverse effects. Consolidation counselling is started once the antiretroviral therapy is initiated and within the period of one to three months, the objectives of which are:
- to monitor drug adherence level of patient
- to reinforce patient’s drug adherence behaviour
- to assess and manage adverse effects of HAART
Counselling at this stage covers the following areas:
- Assessment of one’s knowledge of HAART.
- Monitoring of drug taking behaviour and adherence, and the calculation of adherence level [Box 12.1]. Patient are asked to bring or report the drug stock at home at every clinic visit. The number of tablets of each drug in stock is recorded and used to measure one’s drug-taking adherence.
- Exploration of factors which may affect adherence.
- Provision of adherence support.
Box 12.1. Drug Adherence Assessment (currently adopted in Integrated Treatment Centre of Special Preventive Programme in Department of Health)
|Drug Adherence level is calculated by:|
|No. of doses of HAART taken||X 100%|
|No. of prescribed doses of HAART should be taken|
|B||95 – 99|
|C||90 – 94|
Stage 4: Maintenance
When the HAART regimen is stabilised, frequent and regular monitoring of drug adherence is important to maintain optimal behaviour. The nurse counsellor measures and assesses adherence on an ongoing basis to allow comparison across time. This also serves as an opportunity to evaluate side effects, identify barriers and provide support and reinforcement. The objectives of maintenance counselling are:
- to optimise adherence to HAART
- to reinforce drug taking behaviour
Counselling at this stage therefore covers the followings:
- Assessment of drug adherence is made, using the standard drug adherence assessment form. The nurse counsellor assesses patient’s knowledge on HAART, drug-taking behaviour, barriers and facilitators of drug adherence at, say,[Box 12.2] the first half year and then on a yearly basis.
- During assessment, the nurse counsellor watches out for any new side effects, identifies barriers of drug adherence such as change in daily living pattern and such undesirable practices as drug holiday, partial dose omissions.
- Encouragement is given to reinforce adherence. This is done in conjunction with the provision of information on the results of viral load and CD4 count. This can also serve as a reward to one’s adherence to the drug schedules.
Specific strategies to improve drug adherence may also be considered, which include:
- Review of one’s perception of health goals.
- Review of the regimen and the medication schedule; simplification of the regimen to facilitate a better match of schedule to life pattern.
- Assessment and management of side effects.
Box 12.2. Barriers and Facilitators to HIV drug adherence
|daily routine changed||Support from family/friends|
|away from home/travel||Good relationship between patient and|
|Slept through dosing time|
|ran out pills|
|Too many pills||convenience|
|food restriction||simple regimen|
|side effects, e.g. GI upset,||Good knowledge on HAART|
|tiredness, CNS symptoms and||Belief of the benefit of HAART|
|skin problem||Good tolerance|
|Good drug effect such as undetectable viral load, raised CD4 count|
Antiretroviral adherence is one the key determinants of HAART treatment success. Optimally patients achieving 100% adherence to HAART can keep their immune function healthy and can fully suppress viral replication. The initiation of HAART should be a carefully mediated decision following a systemic approach of drug adherence counselling and informed discussion with the patient. Once started, patient should be provided with support and positive reinforcement continuously, regular monitoring and assessment, to facilitate achievement of optimal drug adherence.
Algorithm 12. Moving through the 4 Stages of drug adherence counselling
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- U.S. Department of Health and Human Services, Health Resources and Services Administration. Guide for HIV/AIDS Clinical Care − 2014 Edition. Rockville, MD: U.S. Department of Health and Human Services, 2014. Available from: link