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M. Imran Shahid's blog


How to deliver Good Adherence support (Lessons from round the world)
Related to country: Pakistan

Translations available in: English (original) | French | Spanish | Italian | German | Portuguese | Swedish | Russian | Dutch | Arabic

The first-line antiretroviral regimens now being taken in resource-limited settings are based on nevirapine or efavirenz. Resistance to either drug can develop very easily if doses are missed, and studies have shown that patients need to take at least 95% of doses in order to have a good chance of maintaining viral suppression. That means missing no more than three doses a month for a twice-daily regimen, and maintaining that level of adherence year after year.

Given that many treatment programmes are reporting that between 65% and 80% of patients still have undetectable viral load after several years of treatment, it is clear that these demanding levels of adherence are being widely achieved.

However, maintaining good adherence among patients requires vigilance. Research in Nigeria conducted by the University of Abuja Hospital and the University of Maryland Institute of Human Virology found that one in five patients reported adherence of less than 95% (judged by how promptly people came back for more tablets, the so-called refill rate) (Farley).

At Kericho Hospital in Kenya , around one in twenty patients on ARVs reported missing doses within the previous three days. In 29% of cases it was because they had run out of tablets and couldn’t afford to get to the clinic to get more. But in another 29% of cases it was because, after a median ten months of treatment, they felt better and didn’t see the need to carry on taking medication.

This study found that the single most important factor in deterring whether patients kept taking their medication was the belief, cited by 80% of adherent patients, that ARVs work. However only 29% mentioned that they knew adherence was critical in making ARVs work.

Individual barriers to good adherence

A systematic review of all the published studies looking at adherence in developed and developing countries found a striking universality of barriers to adherence – and facilitators of good adherence among individuals around the world (Mills 2006).

Barriers
Facilitators

Forgetting to take tablets or too busy
Fear of disclosure
Disruptive to everyday life or away from home
Don’t understand treatment
Side effects – real and anticipated
Depression / hopeless
Concurrent substance abuse
Suspicious of medicines
Belief that the drugs work/seeing positive results
Disclosure/social support
Twice daily dosing or less, fewer pills
Good relationship with health care provider


Katherine Semrau of Boston University reported at the 2007 HIV Implementers’ meeting on reasons why women in Zambia refused or stopped HIV treatment. Her findings were strikingly consistent with findings from qualitative research among Africans living in the United Kingdom .

Reasons for not starting when treatment offered
Reasons for stopping treatment

“ARVs are bad”
Stigma
Fear of divorce
“Not enough food”
Fear of permanent lifestyle changes such as avoiding alcohol
Taking medicines indefinitely when there is no cure
Lack of accurate information about the drugs and HIV treatment aims


Her focus groups told her that people stopping or refusing treatment were repeatedly receiving inaccurate information from trusted figures such as pastors, traditional healers, teachers and respected elders which undermined the authority of information received from nurses, doctors and community-based organizations. A classic notion in circulation was the belief that ARVs must be taken with food to be effective.

It was clear, she said, that treatment information needs to be adjusted to the cultural context, and it was important to identify the information gatekeepers who are providing misleading information and work to re-educate them.

Community barriers and community empowerment

But stigma, and the inability to disclose one’s HIV status, remain particularly important barriers to good adherence in most communities, and indicate the need to integrate treatment literacy within a community-based approach that seeks to address stigma.

The International HIV/AIDS Alliance carried out a two-year Programme in Zambia from late 2004 at sites in Lusaka and Ndola to promote community preparedness for treatment.

The team’s evaluation of lessons learned during the first six months of the project highlighted that “even in the hardest hit communities, stigma continues to be the most profound barrier to effective community-based responses.”

The ACER treatment support Programme aimed to reach 60,000 people in two low income urban areas, to provide community education on ART, voluntary counseling and testing, prevention messages and stigma reduction. It also set out to establish a two way referral system between the health system and the community, using community volunteers and treatment support workers living openly with HIV. The aim of the Programme was to engage the whole community, to build on existing community structures, and break down barriers that might impede the success of ART roll-out – particularly stigma.

Full evaluation of the project isn’t completed, but there has been a clear increase in the uptake of VCT in the community, recognition from the Ministry of Health of the key role that community organizations are playing in adherence support and linkage between clinics and communities, and a high degree of appreciation among patients for the support provided by peers within the clinic.

The experience in Zambia led to the funding by USAID of a larger and more ambitious community mobilization Programme managed by the Alliance in Uganda . The Programme has recruited over 80 `network support agents` based in 43 health facilities across seven districts. The network support agents – people with HIV – have been chosen by their PWHIV support groups to act as links between the health facility and the group, and are trained to support delivery of prevention, treatment and care services, including VCT, disclosure, treatment education and adherence support. They carry out community follow-up of ART patients on bicycles provided by the project, and provide feedback to health facilities on community barriers to testing, treatment and adherence.

The project is also measuring success by measuring the number of PWHIV support groups which apply for project grants to expand their community services; 215 asked for money but only 45 could be funded.

In 2006-7 alone, the Programme reached 94,500 people with education, including provision of adherence support to over 9,000 and ART literacy training to over 19,000.

The two projects show the difficulty of disentangling `adherence support` and `community engagement`, and the value of integrating adherence support within a larger community mobilization.

Structural barriers

Numerous studies have now shown that the most important structural barrier to adherence is the charging of fees for medical care or medicines. The second biggest barrier, as identified above, is transport to the clinic.

“What are the total out of pocket costs, not only of coming to the clinic, but of not staying at home to dig your cassava?” asked Alex Coutinho of TASO in Uganda during the HIV Implementers’ meeting.

An extensive qualitative study of barriers to adherence in Botswana , Uganda and Tanzania showed that transport costs, user fees for accessing health services and lost wages were all important financial barriers to good adherence. The researchers recommended that ART programmes provide transport and food support to patients who are too poor to pay, and that recurrent costs to users should be reduced by providing three-months, rather than the one-month supply of medication once optimal adherence levels have been achieved (Hardon 2007).

Loss to follow-up

Speaking at the 2007 HIV Implementers’ meeting Alex Coutinho of TASO, Uganda , highlighted the challenge that adherence support has posed for treatment programmes. In the early days of treatment roll out, programmes adopted either an enrollment or an adherence model of scale-up. While the enrollment model focused on starting the maximum possible number of people on treatment, the adherence model focused on preparing people thoroughly for the challenge of adherence to daily antiretroviral treatment.

Although the adherence model often proved slow to swell the number of patients of treatment, it has proved better at retaining patients on treatment. The enrollment model often saw 30% loss to follow-up rates, said Alex Coutinho.

As the 2007 HIV Implementers’ meeting heard, it is difficult to separate the issues of adherence and loss to follow-up. After all, if a patient is lost to follow-up, they are by definition non-adherent to treatment

Spotting loss to follow-up starts with good systems for record-keeping, and reliable ways of finding patients who are lost to follow-up. As Colin Shephard of I-TECH Ethiopia explained, this can be pretty challenging.

I-TECH was working with the Felege Hiwat hospital in Bahir Dar, in the northern Amhara region, which had started over 3600 patients on ART by the end of 2006. However 22% of those patients were lost to follow-up, and in 41% of cases there was no contact information for the patient. In a further 47% of cases, the only information available was the name of a local landmark.

The clinic recruited and trained three patients already on ART to locate patients lost to follow-up, and to obtain accurate address information for all newly registered patients, together with consent for home visits if they missed a clinic appointment.

Home visits and other enquiries were able to locate just 6% of patients, with a further 44% of the LTFUs discovered to be dead, and the remainder still missing.

In South Africa , Klerksdorp Hospital in the North-West province has also employed default tracers since it became apparent that the loss to follow-up rate had reached 21%. The vast majority of those lost to follow-up defaulted during the first six months of treatment, but an audit of 300 patients lost to follow-up could only identify 126 deaths from local death records. The remainder were still out there somewhere, but, said Dr Ebrahim Variava, either their address details weren’t complete, or they weren’t answering their mobile phones.

“We think cell phones are a blessing and a curse [from the adherence point of view]. People change numbers constantly because the cheapest way to run a phone is to buy a starter pack with a new number.”

Some programmes require that a home visit to verify residency in the district takes place before treatment can begin. In addition to phone and complete address, the International Center for AIDS Programmes’ Clinical Manual recommends attempting to obtain names, addresses and phone numbers for close family and/or friends, and places where the patient spends time (work or recreation — as well as permission to make home visits or to contact family and friends.

In Tanzania ICAP found significant differences in loss to follow-up rates between four clinics in the Pawn region south of Dar es Salaam . Although adherence support was delivered through a standard model of three sessions of adherence counseling prior to treatment, reinforced with counseling at each visit to the drug dispensing point, loss to follow-up ranged from 3 – 4% at two clinics up to 25% at another site.

ICAAP discovered that the higher loss to follow-up rates were associated with inadequate staff resources for defaulter tracing together with inadequate community sensitization about the need for adherence. Stigma and lack of disclosure also played a part. The other big barrier was transport to the clinic.

In order to improve retention in care and adherence to treatment, ICAAP’s clinics took the following steps:

· They encouraged family-based counseling in order to promote HIV testing and disclosure

· They began to provide transport from rural health centres to ARV clinics with high loss to follow-up rates, and established satellite clinics at local health centres too.

· Patients with an excellent record of adherence were permitted to take three months supply of drugs rather than having to return each month.

· Local awareness campaigns about the importance of adherence to ART were mounted.

Preparing the patient for treatment

Treatment programmes take differing routes to determine which patients will start treatment, as Alex Coutinho noted, with some concentrating on quantity rather than quality in order to reach national and regional targets. Some also regard extensive adherence preparation as too demanding on sick patients, and see the priority to be getting them onto treatment.

On the other hand, adherence-focused programmes tend to take their lead from the pioneering model developed over the past five years by MSF in Khayelitsha , South Africa , and many other treatment sites around the world.

It’s a model that places the patient at the centre, and which eschews the frankly punitive attitudes of public health TB programmes, which assume that the patient will be irresponsible, in favor of an approach that assumes that, armed with sufficient knowledge and support, the patient is the one who is responsible for the long-term success of her treatment.

The model comprises thorough patient education on the benefits and side effects of ARV treatment prior to treatment initiation, and continuous support with participation in support groups, self-nomination of a treatment supporter and the availability of adherence counselors for one-to-one sessions. Adherence to tablets is verified by regular pill counts on return dates at clinics. Pill boxes and printed material are provided as adherence aids.

ICAP stresses that “adherence is more than taking medications” but also must include (and generally begins with) “adherence to care:” Does the patient make all of her or his scheduled appointments, participate in education and counseling, and attend support groups? Are they receptive to the idea of home visits or other outreach? Have they come in and completed ordered tests, modified his or her lifestyle and made a commitment to keep from transmitting HIV to others?

In many clinics patients are judged to be ready for treatment only when they have been through a preparation process, and their cases are reviewed by a selection group. In Vietnam for example, the selection group at Family Health International-managed treatment projects consists of clinic and home-based care team staff, as well an elected representative of local people with HIV.