low adherence to antiretroviral assignment

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1 SCHOOL OF HEALTH CARE ADMINISTRATION HIV ANTIRETROVIRAL ADHERENCE IN SWAZILAND UNDERSTANDING THE ISSUE: PUTTING SYSTEMS THINKING TO WORK Master Students: Lomkhosi Tengetile Dlamini. Alexander Bermudez Rubashkyn

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Systems Thinking applied to Understand the Low Adherence to ART or Antiretroviral Therapies for HIV in Swaziland.

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SCHOOL OF HEALTH CARE ADMINISTRATION

HIV ANTIRETROVIRAL ADHERENCE IN SWAZILAND

UNDERSTANDING THE ISSUE: PUTTING SYSTEMS THINKING TO WORK

Master Students:

Lomkhosi Tengetile Dlamini.

Alexander Bermudez Rubashkyn∴

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Adherence to Antiretroviral (ART) in Swaziland

Background

Swaziland, a landlocked country, has a declining population of approximately 1.17 million people. An estimated 76% of its people live in rural areas. Although Swaziland is classified as a “low middle-income” country, there are great disparities between the rich and the poor. Nearly 70 percent of the population lives below the poverty line and the unemployment rate is 40%.1

Swaziland has the highest HIV prevalence rate in the world with 26% of 15-49 year olds living with HIV/AIDS and this is currently the leading cause of mortality and was responsible for an estimated 6,760 deaths in 2011.2 The Government, private sector, non-governmental organizations (NGOs), faith based organizations and traditional healers are involved in the provision of health services. There are 6 national hospitals and more than 200 clinics and health centers. There is an experience of rising mortality, increase of orphans and this is causing the social and economic impact of the disease to evolve. The country’s life expectancy for both females and males is 49,9 years the lowest in the world and the hike in HIV/AIDS is the most impacting the expectancy rate.9

Variable Value

Life expectancy9

2008 49.9 years

Prevalence of HIV% in (15 - 49 yr old)2

2011

26.3%

Prevalence of TB2

2011 1262 / 100.000

TB patients infected with HIV2

79,8%

Stimated deads produced by HIV

20112

6.760

Table. No. 1 Variables related to Health

P % of not surviving to

age 40 - 2004

Adult illiteracy %

Human poverty Index

Swaziland 74,3 20,4 53,9 Hhohho 70,1 17,0 49,8 Manzini 69,5 19,3 49,6

Shiselweni 78,5 20,8 56,6 Lubombo 81,9 26,3 60,5

Table. No. 2 Variables related to health, education and poverty.

Health system and treatment

The Swaziland health system has an acute shortage of health staff, complicated by the burden of disease due to HIV and AIDS, migration of skilled health workers and the imbalance of staff in favor of the private sector and urban areas. According to the National Health Policy (2007), in 2004 there were 184 medical doctors, 3070 staff nurses, 275 nurse assistants, 46 pharmacists, 2 pharmacy technicians, 18 dispensers and a number of allied health professionals whose work is supplemented by approximately 4000 rural health motivators, home based care givers and community birth attendants.3

There are only 2 physicians available for every 10,000 people, and one nurse for every 356 people in Swaziland.4 The recruitment and retention of staff is constrained by poor working conditions, few incentives and low pay, and the availability of health staff is declining further due to HIV related illness and deaths.5

About 184 116 people are living with HIV and about 86 220 of them are eligible for ART (Ministry of Health Swaziland HIV Estimates and Projections report, 2010). At the end of 2009, antiretroviral therapy had become available at 89 health facilities across the country and just over 47,000 people were receiving (ARV). Currently there are 33 ART initiating sites in addition to 63 refill and roll out

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sites. More efforts are still needed to respond to the ART needs in the country as more people are becoming eligible for ART.3 Medicines are provided free of charge in all public health facilities. However in hospitals, a nominal user fee E10 is charged which is equivalent to NT$ 40 whiles no fees are charged in public health units and clinics.3

Looking at the overview the country’s health system is experiencing persistent challenges such as low budget, depleted infrastructure and inadequate supplies to respond to the heavy burden of disease. Health management systems, including financial management and budgeting, are centralized and mostly unresponsive to the new health development challenges at different levels of service delivery. The increase in patient loads, long queues, shortened consultation times by health care providers combined with the complexity of many cases associated with HIV and AIDS, have all militated against the quality of health care.7 Thus this academic paper will look more into how the issue of low adherence to Antiretroviral rolls out in the country.

Another obstacle to the provision of effective treatment in Swaziland is the pervasive belief in witchcraft and the trust and belief in traditional health practitioners of which there are more than 8,000 in Swaziland. According to a 2008 government report, some people are tempted to replace ARVs with medicines provided by these health practitioners, reducing levels of treatment adherence.6 There is no policy on traditional and complementary medicine but their use is wide spread in the country. Patients often visit a traditional health practitioner and a health care facility for the same illness. There are no mechanisms for collaboration with traditional health practitioners, to ensure the efficacy of their preparations.3

Medicine Donations also contribute to the supply of medicines in Swaziland. According to existing national medicine donation guidelines which have never been adopted, all donations

should be notified through the Chief Pharmacist for clearance. However, this is seldom done and various problems are encountered with donations such as: poor quality medicines, items outside the essential medicines list as well as obsolete or old medicines.3

What is Adherence?

Adherence is defined as the extent to which a person’s behavior in terms of taking medications, following a diet, and executing lifestyle changes or follows agreed recommendations from a health care provider (WHO 2003). In the case of ART this implies taking the drugs in the right quantities, at the right time, and following dietary and other lifestyle changes for a lifetime.8 Antiretroviral medication adherence is critically important because through adherence, patients and providers can: Prevent opportunistic infections, diagnose complications early, improve outcomes of treatment and care, delay emergence of drug resistance, develop a positive patient-provider relationship.

Effects of low adherence to ART

Poor adherence leads to the development of resistance to (ART) and the economic consequences of poor adherence include stimulating the need for ongoing investment in research and development of new compounds to fight new resistant variants.10 Therefore because of the new resistant variants that occur, low adherence then indirectly increase treatment cost.

Adherence is to be taken seriously, especially on the first-line regimen. Poor adherence to first-line therapy will speed the development of viral resistance to and hasten the need for second-line therapy. In Swaziland , the options for second and third line regimens are limited; the ART programme needs to ensure that there is a greater level of adherence to the first line regimen.

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Table No. 3 Number of patients Lost to Follow Up or Stopped-ART in 201111

The data above suggests that a substantial number of patients into ART were lost to follow-up and stopped the treatment from the program during this annual reporting. This paper therefore seeks to investigate the influences leading to this.

As well as part of the analysis of the influences is understanding of our issue using the systems thinking.

These data concludes that 23% of the people on treatments are not adherent, and this is our main concern, because the objective is to have 0% of non-adherence.

Is important to say that there is not data available of previous periods of time about Adherence to ART in Swaziland.

Dimensions in the Adherence

According with the WHO the adherence is a multidimensional unit related to one therapy, in the report of 200314 they describe the elements, and the dimensions related to HIV, however the relation between dimensions is no well explained, in the Figure 1, is described the dimensions affecting the adherence using a multimodal elements keeping a direct relationship between the central element (Adherence) and between them as well. Nonetheless this direct linkage does not mean

that there is a direct element of one dimension related to other element in other dimension, but it means that there are bonds or intermediary elements that are allowing keeping this linkage between these 6 dimensions.

Factors that affect and influence adherence to ART in Swaziland

The dynamic understanding of all the elements together, can give us an a general approach to our issue, but beyond, this bottom-up analysis can give us a panoramic view of our issue.

Our purpose is to take all the possible elements and put them together, doing and scale-up or bottom-up understanding, to have a general picture of our issue.

Thus, here will be described some o the most important elements or factor that are affecting the adherence and are playing an important role in Swaziland. The other elements, linkage elements, intermediaries, are listed in the general system of adherence, figure 2.

Region Condition

Non adherence Adherence Hhohho 7653 19571

Lubombo 2685 11956 Manzini 5797 21631

Shiselweni 4425 12677 Total 20560 65835

Figure No. 1 Dimensions of Adherence in HIV

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Figu

re  2.  A

dheren

ce  re

lated  factors  a

nd  its  d

imen

sions  

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1. Patient related factors: Perceived wellbeing with

disappearing of symptoms: A number of people believe that medications are supposed to be taken only when one is ill and to cure an illness for a short duration, not for life12.

Available evidence suggests that a

good level of understanding about HIV/AIDS and awareness of the consequences of non-adherence are associated with good adherence (Fisher et al 2006). For example, understanding of the issues around HIV/AIDS such as what the CD-4 cells mean can enhance adherence of antiretroviral medication by a patient.

Misunderstandings of prescribing

instructions: It is, therefore, expected that misinformation and misconceptions about the treatment would compromise an individual’s ability to adhere. Such that cases of lacking correct information are abound, leading to some patients sharing medications or not taking them correctly.12

2. Therapy related factors:

Adherence may also be affected by

therapy related factors. Medication side effects can decrease adherence if patients believe they cannot control or manage them (Krueger et al., 2005).

When antiretrovirals are slow to produce effects, the patients are most likely to believe the medication is not working and may stop taking it.

The complexity of the medication

regimen, which includes the number of medications and number of daily doses required and the duration of therapy have been associated with decreased adherence in the country.

3. Socio-cultural and geographical

factors

Social support is obtained from different sources such as partners, children, and friends. These could help adherence behavior by taking a leading role in reminding the patients to take the pills. If patients lack social support they are highly likely to default and not adhere to their medication12

Unstable living environments which

include bad living conditions, limited access to health care because of geographic distances where by patients live very far away from the nearest health facility, lack of financial resources which includes transportation bus fares to get to the health facility, have all been associated with decreased adherence rates.13

Stigma: HIV/AIDS elicits stigma

from society more than any other disease. Stigmatizing attitudes and actions include discrimination, avoidance, ridicule, harassment and even forceful removal from homes (Rao et al 2007; UNAIDS 2005).12

Patients may default and not adhere to medication because of stigma with the fear of being discriminated against.

 

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Culture   and   religion:   Swaziland   is   a  culture   bound   country   and   has  strong   traditional   beliefs   especially  about   health   issues. A common perception of people living in all regions of the country is the traditional beliefs on taking treatments, the belief that traditional medication works best than the bio-medical medication, thus more trust on the traditional medication and neglecting the bio-medical leading to low levels of adherence.12

4. Provider patient relationship

There is a growing recognition that a

great deal of adherence comes from the positive interaction between patients and their health care providers. The complexities of ART treatment require that patients are involved in their treatment decisions. This entails a frank and open discussion between the two parties. Patients need to be adequately informed about their treatment schedule and the importance of adhering to the treatment regimen therefore a negative provider patient relationship will impact the patients’ adherence in a negative way.

Since patients need to be adequately informed about their treatment schedule and told about the importance of adhering to the treatment regimen, it is of importance that the health provider has accurate information about the importance of adherence to medication and has enough information about the medication regimens themselves. Illiteracy of the medication prescription by the provider may cause the patient to

loose trust and confidence in the provider causing a dent to their relationship, which might lead the patient party to default.

A good relationship between the patient and health care provider, which features encouragement and reinforcement from the provider, has a positive impact on adherence (Krueger et al., 2003). Poor provider communication concerning the benefits, instructions for use, and side effects of medications that may occur can also contribute to non-adherence.13

5. Health care system related factors Inadequate supply of ARV is a

problem that health facilities contend, which then force patients on ART to miss taking ARVs as required, contributing to low levels of adherence.

There are issues with health facilities in Swaziland that are potential obstacles to adherence, to begin with there are lack of adequate health facilities or services nearby for some patients therefore the need for increment of ART clinics

The scaling up of ART treatment in Swaziland has occurred without an equal increase in the number of medical personnel, thereby hiking the already poor provider-patient ratio. This has translated into a number of problems where by queuing of patients increases and also increases the chances of patients turning back home without receiving their medication.12

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6. External Factor

Those factors which determine the resources in the medication chain, as Pharmaceutical supplier including the logistics, and the resources, including the governmental ones, and the NGO resources.

It its important to say that several elements in the dynamic system were suggested using the experience of several patients in the Treatment Action Campaign (2006) 15, on the other hand our experience as health professionals and public administrators allowed us to expand the variables and the integration of these elements in our system, while we were doing the bottom-up.

General Unit of Measurement of Adherence.

There are several ways to measure the adherence to ART, the CAS, MEMS, pill count and Interview, these measurements excluding the pill count, are multidimensional, and are useful to determine the final result in qualitative as (following therapy, stopped therapy) or quantitative as a score.

In Swaziland, because of the lack of doctors, there is not an extensive sort of data about the determination of the CAS or the pill count, the only source we can use to determine the Adherence is using the qualitative term, Adherence or non-adherence as is shown in the Table no 3. The ratio , between Non-adherence / Population (Non Adherence Index, equation 1) in treatment can be used as an quantitative unit which can be addressed to determine whether or not determinated action was effective to increase de adherence in Swaziland.

𝑁𝑜𝑛  𝐴𝑑ℎ𝑒𝑟𝑒𝑛𝑐𝑒  𝐼𝑛𝑑𝑒𝑥:  𝑁𝑜𝑛  𝐴𝑑ℎ𝑒𝑟𝑒𝑛𝑡

𝑃𝑜𝑝  𝑖𝑛  𝑇𝑟𝑒𝑎𝑡𝑚𝑒𝑛𝑡

Equation No 1, Non Adherence Index.

In short the variable of our system is the Non-Adherence Index, as we know, we don't have the picture of the behavior in the timeline of the Adherence, the only fact we have is the 23% of non-adherence in 2011, however, beyond wanting to know if the problem has worsened, we have to analyze why the proposed index is not being zero in Swaziland?. Possible Directions and Interventions

The WHO has defined a set of several interventions addressed to ART and HIV We can identify some of those interventions according with the modeling of dimensions that we used to describe our issue. Socioeconomic Interventions: Family preparedness; mobilization of community-based organizations; intensive education on use of medicines for patients with low levels of literacy; assessment of social needs; Health Community Education. Relation Provider - Patient, Health System and Therapy Related interventions: Good patient–physician relationship; multidisciplinary care; training of health professionals on adherence; training of health professionals on adherence education; training in monitoring adherence; training caregivers; identification of the treatment goals and development of strategies to meet them; management of disease and treatment in conjunction with the patients; uninterrupted ready availability of information; regular consultations with nurses/physicians; nonjudgmental attitude and assistance; rational selection of medications, education on use of medicines; supportive medical consultation; screening for comorbidities; attention to mental illness, as well as abuse of alcohol and other drugs; provide resources for staff support; Pharmaceutical quality regulations; Research.

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External Factor Interventions: Strong Pharmaceutical policy that allow address resources for HIV treatment; Contracts and direct alliances with suppliers; Regulations over distributors and warehouses; Good system of delivery in the pharmacies in the Hospitals. Patient related Interventions: Simplification of regimens to avoid confusion; education on use of medicines; assessment and management of side-effects; patient-tailored prescriptions; medications for symptoms; education on adherence; continuous monitoring and reassessment of treatment. Continuous physical and psychiatric consultation; behavioral and motivational intervention; counseling/ psychotherapy; telephone counseling; memory aids and reminders; telemedicine; self-management of disease and treatment.

Bibliography

1. www.columbia-icap.org. retrieved 10/11/2012

2. Transitional funding mechanism document (2012)

3. Kingdom of Swaziland ministry of health (2011) ‘National pharmaceutical policy

4. Physicians for Human Rights (2007) 'Epidemic of Inequality: Women’s Rights and HIV/AIDS in Botswana and Swaziland'

5. Kober, K and Van Damme, W, (2006) 'Public sector nurses in Swaziland: can the downturn be reversed?

6. The International Treatment Preparedness Coalition (2010, April) 'Rationing Funds risking lives World backtracks on HIV treatment

7. WHO country cooperation strategy Swaziland (2008-2013)

8. Airhihenbuwa, C.O. &R. Ogregon (2000) “A critical assessment of theories/Models used

in health communication for HIV/AIDS” Journal of Health Communication 5:5-15

9. CIA world fact book (2012)

10. WHO: adherence to long-term therapies, evidence for action (2003)

11. ART programme annual report: strategic information department (2012)

12. Eliud Wekesa, adherence in resource poor settings in sub-Saharan Africa: a Multidisciplinary review (2006)

13. Mededucation: Improving medication adherence in older adults (2010)

14. World Health Organization. Adherence to Long Term Therapies: Evidence for Action. Switzerland; (2003).

15. ARVs in our lives: a handbook for people living with HIV and treatment advocates in support groups, clinics and communities, TAC (2006)