Re: SACS accused of discussing HIV report: Patients' readiness to start ART

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Hope you find this article useful published in British Medical Journal on

Patients' readiness to start highly active antiretroviral treatment for HIV.

Education and debate

Patients' readiness to start highly active antiretroviral treatment for HIV

Hirut T Gebrekristos, research fellow1, Koleka P Mlisana, project director1,

Quarraisha Abdool Karim, associate professor1

1 Centre for AIDS Programme of Research in South Africa (CAPRISA), R

Mandela, School of Medicine, Durban, South Africa

Correspondence to: H T Gebrekristos hgebrekr@...

Assessing whether patients are ready to start antiretroviral treatment may

improve HIV prevention and treatment outcomes

Introduction

Initiatives to increase access to antiretroviral treatment in resource

constrained settings are growing, but the scale and magnitude of the HIV

epidemic in these settings raises a number of operational and ethical

challenges. Most people infected with HIV are unaware of their status, and

people who are aware of their status fear stigmatisation and discrimination.

Key themes about access to treatment include who gets treatment, when is the

best time to start treatment, and how to ensure therapeutic success.

Numerous guidelines for treatment have been developed nationally and

internationally. One concern is how initiation of antiretroviral treatment

should relate to patients' readiness and commitment. Although patients'

readiness is emphasised as a requirement for starting treatment in several

guidelines,1-4 the guidelines are neither clear nor in consensus about what

constitutes readiness and how this readiness should be assessed. Given this

ambiguity, readiness may be used to ration resources, particularly in

resource poor settings, in which access to antiretrovirals is currently gaining

support. The potential of using readiness to improve HIV prevention and care

outcomes, however, mandates that we closely examine the use of readiness for

starting highly active antiretroviral treatment (HAART).

Studies about assessing patients' readiness for starting HAART or the impact of

this on therapeutic success are few. One small study found that lack of

readiness resulted in interrupted treatment and risky sexual behaviour;

therefore, readiness for treatment may help care givers to make decisions about

when to start treatment with antiretrovirals for each patient.5 The potential

importance of treatment readiness for therapeutic success is why a more

structured and systematic approach to evaluating readiness is needed.

In addition, a systematic evaluation of the use of treatment readiness becomes

particularly important in settings where " readiness " may be misused to ration

resources. Rigorously collected data will be critical in shaping appropriate

interventions that go beyond anecdotal notions that readiness is important in

determining when to start HAART.

Clinical indicators have been central to debates on when to initiate HAART,

where CD4 cell count is a key determining factor.6-9 By incorporating a

compulsory drug readiness programme into decisions on starting treatment, the

South African government's HAART rollout plan expands this debate.10 The South

African plan is fairly detailed and specific in requiring education on HIV/AIDS,

positive living, opportunistic infections, care and treatment for HIV/AIDS,

HAART side effects, and the importance of treatment adherence.

Although early in its implementation, the South African HAART rollout plan not

only expands the debate on when to initiate therapy, but may also provide an

opportunity to understand and evaluate the benefit of treatment readiness for

decisions on HAART initiation.

What are possible ways of understanding and ascertaining patients' readiness for

starting HAART? Intuitively, we would expect there to be a range of levels for

readiness depending, among other things, on disease state, knowledge and

understanding of anti-retrovirals, levels of stigma and discrimination, sex,

existing support structures, and motivation. Given the complex set of factors

that are likely to influence readiness, what minimum level of readiness should

distinguish between decisions to start or delay treatment? Using the South

African HAART rollout plan as a point of departure, we present a framework for

how readiness may be understood and suggest a possible method that may help in

measuring readiness.

What constitutes adequate readiness to start HAART?

One way of considering and distinguishing between different levels of

treatment readiness is to think in terms of variations of health literacy,

including three broad categories—basic, functional, and critical literacy.11 12

Within this context, readiness can range from knowledge of basic information

about antiretroviral treatment to a more comprehensive approach that empowers

patients not only to understand the fundamentals involved in participating in

treatment but also includes the social skills and capacity to effectively access

other pertinent health services and maintain good health. Using these three

categories as a foundation, box 1 gives a

framework for understanding HAART treatment readiness.

Box 1: Readiness to start drug treatment Before starting

Basic

• Basic knowledge of HIV transmission and prevention

• Understanding of antiretroviral treatment, the side effects of treatment, and

belief in treatment efficacy

• Ability to comprehend, cope, and comply with prescribed actions, such as

treatment adherence and safer sexual practices

• Willingness to create support systems to cope with HIV status and

facilitate treatment, such as disclosing status to family, friends, and partners

After starting

Functional

• Advanced knowledge and skills to cope and manage HIV status and treatment that

is grounded on experiences

• Ability to recognise and seek care for opportunistic infections

Critical

• Considerable level of knowledge, personal autonomy, skills, and confidence to

manage the consequences of HIV status and treatment

• Capacity to take action that encourages health and discourages the

determinants of ill health, such as substance abuse, unsafe sexual practice, and

adherence

In box 1, we have distinguished between the minimum readiness before

starting treatment (basic) and the levels of readiness that may result from

having treatment (functional and critical readiness). Readiness is also likely

to be influenced by personal and social factors. For example, someone who has

the support of family or friends and the personal drive to participate in

treatment, but who does not have the basic information to start treatment, will

have a different set of needs before becoming ready than someone who may have

the information but lacks personal will and social support to participate in

treatment.

In this context, preparing the person with the information deficit is less

challenging. In other words, what constitutes readiness for starting treatment

should take all of these elements into account.

Although we have given a somewhat polarised example, there can be different

levels of knowledge, personal initiative, social support, etc. The readiness

required to start treatment is also likely to be

different from the readiness required to maintain successful participation in

antiretroviral treatment programmes in an individual's lifetime.

In addition, interactions with patients and care givers may also affect thinking

and action about readiness—and, more importantly, the interface between patients

and care givers is likely to influence whether patients maintain long term

readiness for HAART after starting. The process of building patients' readiness,

therefore, must be supportive and encouraging.

After participation in a drug-readiness programme, patients should fulfil at

least the criteria listed under basic readiness. The functional and critical

levels of readiness may precede starting treatment or may be attained at various

points in the course of treatment and will vary among people, but every effort

should be made to move people forward through active collaboration with

community organisations, non-state run programmes, and other sources of support.

Box 2 shows the factors that constitute basic treatment readiness.

Based on factors that have been used to assess readiness for behavioural

changes, readiness for HIV treatment may include an understanding of the need

for treatment, drive to live, and knowledge and capacity to maintain and build

on commitment.13-15 Personal responsibilities over these categories may differ

by sex and age group, but what constitutes readiness should remain consistent.

Children and young adolescents or adults with mental disabilities may not

completely understand the consequences of their illness

or the expected commitment required for treatment initiation and maintenance and

will therefore require a care giver to support them during treatment.

Care providers of HIV infected children should, therefore, participate in the

drug readiness programme. Adolescents may or may not require a care giver or

parent to participate for them to enrol in treatment, although it would be more

beneficial.

Can readiness to start HAART be measured?

To date, a few small studies have measured readiness to start treatment using

MEMS (medication event monitoring systems).16 This strategy has use for

measuring drug adherence but is inadequate for assessing the broader concept of

readiness. Experience garnered in assessing readiness in substance abuse

treatment programmes,17-20 despite considerable differences between the needs of

the people in such programmes and patients starting HIV treatment, gives some

important principles for assessing readiness for HIV treatment.

Both groups, for example, face challenges with incorporating life

changes and coping with their diagnosis that require high levels of long term

commitment for success. Substance misuse programmes have used psychometric

assessment scores to assess readiness. Based on basic readiness for treatment

with antiretrovirals, as outlined in box 2, it is feasible to develop and test

the reliability of psychometric measures. Importantly, operational research that

monitors and measures the relationship between readiness and treatment outcomes

is critical.

Box 2: Basic readiness

Need

The person initiating treatment must understand that treatment can extend health

and productive life. The participants must trust that treatment will be helpful.

This is one of the factors that could be bolstered by experience on treatment.

Drive to live

This desire may be supported or discouraged by other aspects in life

(family, children, partners, and friends). A component of the drive to live

should include an assessment of shame, stigma, and how perceived or experienced

discrimination is a force in the person's life. Understanding a person's drive

to live may be guided by their expressions of fear for death.

Within this context, assessing the presence and magnitude of anger,

depression, and other emotionally distressing elements could be useful.

Capacity

Knowledge about HIV prevention and transmission and basic knowledge about the

process of treatment and how treatment works, including side effects, is

essential. A basic understanding that treatment works by " reducing the virus " in

the body and the need to maintain viral suppression. Patients should understand

the importance of adherence to treatment and safe sexual practice. Patients need

confidence in their ability to meet expectations of commitment to treatment,

including the coping strategies to maintain emotional stability.

Summary points

No clarity or consensus exists on what constitutes patients' readiness for HIV

treatment and how readiness should be assessed

The more established and readily measurable criteria currently used in

decisions to start highly active antiretroviral treatment (HAART) need to be

expanded understanding the use of treatment readiness is particularly critical

in settings where its role in initiating therapy may be misused to ration

resources

As the World Health Organization and UNAIDS's " 3 by 5 " initiative takes shape

(to give three million people with HIV/AIDS in low and middle income countries

antiretroviral treatment by the end of 2005), and as nations with limited

resources increase access to HIV treatment, understanding and measuring

readiness may become useful for HIV prevention and treatment outcomes. However,

countries should be cautious about using readiness to ration access to

treatment.

Importantly, the assessment of readiness needs to be viewed as a process to

advance all patients to a level of readiness

that will support starting treatment and ensure equitable access to therapy.

Developing sound criteria without restricting access to treatment is a

challenging task that is integrally linked to the definition and measurement of

readiness for treatment. The South African plan gives a valuable point of

departure beyond the existing anecdotal notions that readiness is important in

determining when to start HAART. We have presented a potential way forward in

understanding how to construct, measure, and unpack the potential benefits of

readiness for HIV prevention and treatment outcomes, but rigorous tools are

required to assess various constructs of readiness.

________________________________________

We thank Motshedisi Sebitloane, department of medicine at the University of

KwaZulu-Natal, and Jerome Singh, Centre for AIDS Programme of Research in South

Africa.

Contributors and sources: The idea for the manuscript grew out of

collaborative discussions on patient and provider challenges facing the South

African HAART rollout plan. HTG searched the literature and drafted and revised

the manuscript. KPM and QAK contributed to drafting and revising the manuscript.

QAK gave additional guidance and direction for the paper.

HTG is guarantor. Funding: National Institute of Allergy and Infectious

Diseases, National Institutes of Health, US Department of Health and Human

Services (1U19AI51794), and Research Supplement for Under-represented Minorities

to the Brown/Tufts/Lifespan, Center for AIDS Research, Brown University,

Providence, Rhode Island (P30 AI42853-05S1). Competing interests: None declared.

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BMJ 2005;331:772-775 (1 October), doi:10.1136/bmj.331.7519.772

URL http://bmj.bmjjournals.com/cgi/content/full/331/7519/772

_________________________________________________________________

Regards,

Sanjeev Jain

e-mail: <sparshaids@...>