University of Groningen Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with HIV Sianturi, Elfride

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University of Groningen

Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with

HIV

Sianturi, Elfride

DOI:

10.33612/diss.116883036

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Publication date: 2020

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Sianturi, E. (2020). Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with HIV. Rijksuniversiteit Groningen. https://doi.org/10.33612/diss.116883036

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Exploring strategies to optimize

pharmacotherapy with

antiretrovirals in Papuans living

with HIV

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Paranymphs

Fajri Gafar Abrham Wondimu

The research presented in this thesis was financially supported by the Indonesian Ministry of Education Directorate General of Higher Education (DIKTI).

Cover concept: Elfride Irawati Sianturi Cover design: Lovebird design.

www.lovebir-design.com

Layout: Arya G Printing:

ISBN (printed book): 978-94-034-2386-9

ISBN (e-book): 978-94-034-2387-6

Printing of this thesis was financially supported by Groningen Graduate School of Science (GSEE), the University of Groningen, PT Moratelindo and PT. Palapa Timur Telematika, and

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Exploring strategies to optimize

pharmacotherapy with antiretrovirals in

Papuans living with HIV

Proefschrift

ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen

op gezag van de

rector magnificus prof. dr. C. Wijmenga en volgens besluit van het College voor Promoties.

De openbare verdediging zal plaatsvinden op maandag 10 februari 2020 om 14.30 uur

door

Elfride Irawati Sianturi

geboren op 10 juni 1974 te Jakarta, Indonesië

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Promotores

Prof. dr. K. Taxis Prof. dr. B. Wilffert

Beoordelingscommissie

Prof. dr. C.E.M.J. van Dijk Prof. dr. A.K. Mantel-Teeuwisse Prof. dr. A.E.R. Bos

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CHAPTER 1

GENERAL INTRODUCTION AND THESIS

OUTLINE

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HIV IN INDONESIA AND PAPUA

The first case of HIV patients was reported in 1987 [1]. The latest reports showed that more than 600.000 out of 254 million Indonesians live with HIV [2], with a prevalence ranging between 0.1% and 2% across the country. The prevalence was higher than earlier predictions [3], but lower than in some other countries in the Asia-Pacific region such as Thailand and India [4]. Within Indonesia, the highest prevalence has been reported for the provinces Papua and West Papua. There the HIV prevalence was estimated to be as high as 2.3% among the general population aged 15-49 years [2],[5]. Furthermore, recent figures suggest that death rates as well as HIV incidence in Indonesia increase which is in contrast to other areas in this region which showed a decline [6]. In Indonesia, initially, injection drug use was reported to be the main mode of transmission. In recent years, unprotected sexual intercourse is thought to be the primary mode of transmission of HIV [2]. The Indonesian government created the National AIDS Committee (NAC) which is responsible to coordinate the local, national and international work on HIV/AIDS prevention and treatment [1].

ANTIRETROVIRAL TREATMENT

Zidovudine and didanosine used as monotherapy, were the first antiretroviral agents which improved survival of HIV patients [7]. Since combination treatment with three antiretrovirals became available, mortality and transmission of HIV has been reduced successfully [8]. Antiretroviral therapy (ART) has not been available in Indonesia between 1987-2004 [9]. With support of international donors, the Indonesian government started to provide ART free of charge to patients in 2004, initially in a limited area. As Papua was not included in this area, the Papuan local government used their own budget to provide ART free of charge from 2004 onwards. Provision of ART was part of a program to scale up prevention of HIV infections, and treatment and support of HIV patients with aim to eliminate HIV transmission.

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More than 50% of the total expenditure of this program focused on treatment [2],[9]. Currently, ART is provided free of charge throughout Indonesia, but until now, most patients have to pay for the physician appointment, for the administration as well as for laboratory monitoring out of their pocket [1].

The current national guideline recommends healthcare providers to start HIV patients on

ART, once they are diagnosed irrespective of their CD4 count [10]. Despite this guideline, the

coverage with ART is still low. It is estimated that only 10% of patients living with HIV (PLHIV) receive ART [11]. Furthermore, only a limited number of different ART regimens that are on the market, are available in Indonesia [9],[12]. The first line regimen that is recommended to be used in international guidelines, is also widely used in Indonesia. However, the regimens which are recommended to be used as second line or third line of ART are not yet available in Indonesia. Furthermore, there is a lack of capacity for laboratory monitoring of patients, especially outside the big cities [9].

ADHERENCE TO ART

Patients have to take their ART to achieve successful treatment, but adherence to ART remains a problem [13],[14]. Studies about HIV adherence have been conducted in many areas [15]. Barriers to being adherent among HIV patients have been found to be concerns about medication and health, stigma, family responsibilities, and problems with schedule and routine [16]. Those barriers varied by stage of the disease, region and age [17]–[21]. Studies from Asia and Africa also show that problems of the health system are contributing to a lack of adherence [22]–[24]. Research on adherence to ART in Indonesia is limited. The level of

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adherence among HIV patients in urban areas in Indonesia was found to be lower [25] than in other developing countries [23].

Patients require help to adhere to their medication regimen. Multidisciplinary care combining care from health providers, social community and including family support has been shown to be important [15]. Such help needs to take into account beliefs about medicines, illness concepts, religious values [26],[27] and stigma [28]. Healthcare providers including pharmacists may optimize adherence by some interventions, in particular addressing the problem of adverse effects [29]–[31]. However, so far, pharmacists seemed to have a very limited role in developing countries [32],[33], while pharmacists in developed countries have implemented a diversity of strategies in HIV management [34]–[36]. To implement services such as pharmacists counselling HIV patients in developing countries faced barriers from patients and health care providers [37],[38].

HIV RELATED STIGMA

The sociologist Erving Goffman introduced the term stigma which originally referred to signs which marked slaves or criminals in ancient Greek [39]. Stigma has been described as labeling, stereotyping, separating, and discriminating people [40]. The recognition of difference and devaluation which is embedded in the social context are components of most definitions of stigma [41]. The existence of HIV-related stigma is widely recognized. Being HIV positive is associated with promiscuity, commercial sex, and homosexuality, which are considered deviations from social values. Studies show that stigma can be produced through many ways, but the manifestation of being stigmatized is remarkably similar [42]. Stigma

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negatively influences health outcomes in HIV patients, for example it has been shown that stigma forms a barrier to access healthcare [43]. Different frameworks have been developed to conceptualize and measure HIV-related stigma [44], but only few studies have been conducted in Indonesia in this area [45],[46]. Developing interventions to reduce stigma should combine the theory and local evidence [47].

HIV IN PAPUA

Papua is the most Eastern island of Indonesia with more than 1.2 million inhabitants consisting of indigenous as well as migrants, predominantly from other regions of Indonesia. About half of the Papua island belongs to Indonesia since 1963 [48]. Nowadays it consists of two provinces, namely West Papua and Papua Province. The other half of the island is Papua New Guinea. Melanesians are the predominant indigenous ethnicity living on Papua [49]. Different from other areas in Indonesia, more than 80% of Melanesians belong to Christianity. Papua and West Papua Province have a special autonomy status within Indonesia. This special autonomy status (OTSUS= Otonomi Khusus) gave some privileges to the inhabitants regarding health care, education and infrastructure [50].

Despite economic growth in the provinces Papua and West Papua, the economic situation of many Papuans remains a problem, especially among the indigenous people. The topography of the island is diverse with vast areas of remote highlands. Multiple ethnic subgroups among Papuans have a rich diversity in cultural traditions. Amongst others, ethnic groups hold local concepts about illness and medication [50].

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As has been already highlighted, the prevalence of HIV on the island is estimated to be the highest in Indonesia, reported to be 24 times higher than the national rate [2]. Even though the OTSUS has been held almost 20 years [51], there are problems with infrastructure including health care and transportation. Furthermore, there is a lack of healthcare providers working in peripheral health facilities. Previously HIV care could be merely provided by referral hospitals in the two provinces including dispensing of ART. Recently, the Indonesian government has attempted to strengthen community health facilities in remote areas. Therefore, nowadays a number of community health centers in Papua provide basic diagnostic procedures and monitoring of HIV patients as well as dispense ART [52]. Despite such changes, as in other areas diagnosing HIV early and obtaining ART remains a problem in Papua [53],[54].

KNOWLEDGE GAPS

In summary, despite changes in health care, HIV is still a problem in Indonesia, especially in the two Papuan provinces. To improve this, attempts have been made in providing ART free of charge and decentralizing HIV care to community health centers. Little is known whether these measures have helped HIV patients in this area, in particular little is known about the level of adherence to ART and factors associated with adherence. Furthermore, the role of pharmacists in HIV care have not been explored.

THESIS AIM

In this thesis, the experiences of PLHIV taking ART in Indonesia are explored. In particular, we investigated factors associated with regularly attending counselling when receiving ART, the level of adherence to ART and the factors associated with adherence and the level of

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health literacy. Finally, we also investigated the role of the pharmacist in HIV care in Indonesia.

Outline of this thesis

Chapter 2 identifies the barriers and facilitators of attending HIV counselling in an urban area of Indonesia.

Chapter 3 determines the level of adherence and investigates whether stigma, beliefs about medicines, sociodemographic characteristics including ethnicity are associated with adherence in People living with HIV (PLHIV) in Papua, Indonesia. This chapter also examines the level of health literacy among PLHIV in Indonesia and assesses associations between characteristics of medication, beliefs about medicines, stigma, and health literacy.

Chapter 4 explores experiences among Papuans living with HIV in obtaining ART and in coping to adhere to treatment in a qualitative study interviewing patients and health care providers.

Chapter 5 explores the pharmacist’s role in HIV care by investigating the level of HIV treatment knowledge, empathy, and HIV stigma of pharmacy students and pharmacists working with People living with HIV (PLHIV) in Indonesia.

Chapter 6 summarizes and discusses the main findings of the thesis as well as the implications for clinical practice.

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Therapy Adherence Clinic for Patients Living with HIV,” J. Manag. Care Spec. Pharm., vol. 24, no. 2, pp. 165–172, 2018.

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Stigma : A Review of HIV Stigma Mechanism Measures,” pp. 1160–1177, 2009. [45] K. Ford, D. N. Wirawan, G. M. Sumantera, A. A. S. Sawitri, and M. Stahre, “Voluntary

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CHAPTER 2

Factors associated with regular counselling

attendance of HIV outpatients of a national

referral hospital in Jakarta, Indonesia: a cross

sectional study

M. Pane†, E. I. Sianturi†, Yin Mei Fiona Kong, Philip Bautista, Herlina, K. Taxis †M. Pane and E. I. Sianturi contributed equally to this work.

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Abstract

Background

:

Counselling has been shown to improve adherence to medication in people

living with HIV (PLHIV). The aim of this study was to investigate factors associated with regular counselling attendance of patients taking antiretroviral therapy (ART).

Methods: We conducted a cross-sectional, paper-based survey among 880 PLHIV patients on

ART attending outpatient clinics of a referral hospital in Jakarta. Patients on ART, above 18 years old, providing written consent were included. The primary outcome was regular counselling attendance (i.e., having attended at least 3 sessions in the previous 3 months) using records from counsellors. Factors associated with regular counselling attendance were assessed using logistic regression analysis.

Results: The majority of patients were male (71.1%) and had regular counselling (78.4%).

Being 31 to 40 years old (odds ratio (OR) = 0.55, 95% confidence interval (CI) = 0.32-0.93, > 40 years (OR = 0.30, 95% CI = 0.16-0.55) vs < 30 years, hepatitis B/C co-infection (OR = 0.42, 95% CI = 0.24-0.75), living > 20 km from the hospital (OR = 0.55, 95% CI = 0.33-0.93), transmission male-to-male (OR = 0.13, 95% CI = 0.04-0.44), unemployment (OR = 1.88, 95% CI = 1.02-3.44), part-time employment (OR = 10.71, 95% CI = 4.09-28.02), household member with HIV (OR = 3.31, 95% CI = 1.70-6.44), and Christianity (OR = 1.82, 95% CI = 1.12-2.94) were associated with regular counselling attendance.

Conclusions: This study suggests that counselling services should be reviewed to ensure that

they are near home and fit the needs of older patients or patients with co-morbidities and minorities. Tailoring counselling may improve attendance.

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BACKGROUND

Indonesia, the fourth most populated country in the world, reported a five-fold increase in human immunodeficiency virus (HIV)-infected individuals from 2001 to 2015. The national prevalence rate was estimated to be 0.3% in 2015 with a regional range between 0.2 and over 2% [1]. The epidemic is mostly concentrated in sub-populations who have an elevated risk of HIV transmission. Progress has been made in increasing the number of people tested for HIV and the access to antiretroviral therapy (ART) in recent years. A national comprehensive approach has been recommended to reach further goals [2]. This includes scaling up antiretroviral therapy (ART) regardless of CD4 cell count to reduce mortality and improve quality of life [3].

Counselling is an important part of HIV care. Counselling is offered around testing and diagnosing individuals and may be offered at various stages of the disease [4],[5].

Specifically, counselling on medication use addressing adherence may be initiated before and after startingART. This may include how to access ART, an issue particularly important for resource restricted settings. Counselling may be delivered by health providers or peers. Such counselling has been found to successfully enhance adherence by helping PLHIV to cope with the complexity of ART and stigma associated with taking ART [6]–[8]. Most research has been done on counselling around the time of diagnosis [4]. Although, as has been highlighted, counselling has been found to be beneficial at later stages of the disease [6]–[8], less is known about factors preventing PLHIV from attending counselling.

Therefore, this study investigated facilitators and barriers to regular counselling attendance of PLHIV patients treated at the Prof. Sulianto Saroso Infectious Disease Hospital (RSPI-SS), a national HIV/AIDs referral hospital in North Jakarta, Indonesia.

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METHODS

Study design, setting and data collection

This was a cross-sectional study using a paper-based questionnaire in outpatients of the RSPI-SS hospital. This study was conducted between July and October 2013. In this hospital, attending counselling was mandatory for PLHIV after collecting ART. The hospital provided either individual counselling by a psychologist or a certified HIV counsellor or attending support groups at the hospital or at an HIV-AIDS Non-Governmental Organization (NGO). The duration of counselling varied depending on the type of counselling/counsellor and the needs of patients. PLHIV were eligible to participate if they were on ART (regardless of duration of therapy), were 18 years of age or older, and signed informed consent. All PLHIV who received their ART from the study hospital in the study period were approached for participation. Patients were recruited by HIV clinic staff i.e., nurses or doctors of the study hospital. No specific training was provided to the recruiters. They informed potential participants when they collected ART in the hospital.

Those who were interested were informed about the aim of the study and assured that all information would be kept confidential. Permission was also sought from the participants to access their history of counselling attendance. Once they provided written consent, they were included in the study. The recruiters gave the questionnaire to the participants. The questionnaire consisted of questions about: age, gender, marital status, travel distance from hospital, education, employment status, income, religion, mode of HIV transmission, co-infection with hepatitis B/C, history of injection drug use and whether any of their family members were HIV positive. It took on average 30 min to complete the questionnaire. Data on the counselling attendance of the last three months were collected from the attendance lists provided by the counsellors. We chose a study period of 3 months, to gain

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insight into attendance rates of the recent past. Data of the questionnaires and data on counselling attendance were matched and then anonymized.

Data analysis

The outcome was whether the patient attended any of the three types of HIV counselling (individual counselling, support group sessions at RSPI-SS or NGO support groups) regularly. According to the national guidelines [9], PLHIV have to attend counselling each time they collect ART which is usually supplied once a month. Therefore, we defined regular counselling attendance as attending 3 times counselling in the 3 months prior to recruitment, based on the lists of the counsellors. The outcome was coded as binary (regular counselling attendance = 1, and not regular counselling attendance = 0). We included the following variables in the analysis: gender, age (≤30 years old, 31–40 years old,≥41 years old), marital status (not married, married, divorced/separated), education (primary or less, secondary, tertiary), employment (full-time, part-time, unemployed), income (< 2.5 mil, 2.5–5 mil, 5–10 mil, > 10 mil, no income), religion (Islamic, Christian, Other), hepatitis B/C co-infection (yes, no), reported history of injection drug user (IDU) (yes, no), reported household member with HIV (yes, no), transmission source (male-to-female, male-to-male, IDU, other), distance from hospital (< 10 km, 10–20 km, > 20 km), years since HIV diagnosis (< 2 years, 2–5 years, > 5 years).

Statistical analysis

The sociodemographic data were analyzed descriptively. To explore the association between HIV counselling attendance and demographic, medical and behavioral variables we performed a univariate logistic regression analysis to produce unadjusted odds ratios (OR) and corresponding 95% confidence intervals (CI). Any variable with a p-value < 0.2 was then

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tested for collinearity and then subsequently included in a multiple logistic regression model. A backward stepwise selection procedure was used to obtain the final model. Variables with

a p-value of 0.1 were removed in the process. Adjusted OR and 95% CI were presented for

the final model. The Homer-Lemeshow goodness of fit test was used to assess model validity. Data was analyzed using Stata/IC Version 13 (Stata Cop., College Station TX, USA).

RESULTS

Overall, 1450 PLHIV collected ART in hospital during the study period. Of those, 880 PLHIV agreed toparticipate (60.7%) and these were included in further analysis. The study participants were predominantly male (71.1%) and worked full-time (54.9%). The majority of participants (81.7%) had completed at least secondary education, and reported to be Muslims (60.9%). Over half (53.2%) self-identified transmission as male-to-female, 30.9% as male-to-male, and the remaining were injection drug users or other/missing. Overall, 78.4% had regularly attended counselling during the study period. Table 1 provides the additional socio-demographic information about the participants.

PLHIV being above 40 years old (OR = 0.30, 95% CI= 0.16–0.55), and between 31 and 40 years old (OR = 0.55, 95% CI = 0.32–0.93) were more likely to regularly attend counselling compared to being less than 30 years old. Also, being unemployed (OR = 1.88, 95% CI = 1.02–3.44), and having a part-time job (OR = 10.71, 95% CI = 4.09–28.02) were more likely to regularly attend counselling compared to having full-time employment. Having a household member with HIV (OR = 3.31, 95% CI = 1.70–6.44), reporting being Christian (OR = 1.82, 95% CI = 1.12–2.94) were also more likely to regularly attend counselling. Having Hepatitis B or C co-infection, (OR = 0.42, 95% CI = 0.24–0.75), living more than 20

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km from hospital (OR = 0.55, 95% CI = 0.33–0.93), and self-identified transmission source male-to-male (OR = 0.13, 95% CI = 0.04–0.44) were less likely to regularly attend counselling (Table 1).

DISCUSSION

In our cross-sectional study, we found that nearly 80% of PLHIV regularly attended counselling. This was less than expected, as every PLHIV who collected ART at the hospital had to attend counselling [9]. Attendance rates in our study are difficult to compare to other studies, since policies and practice of counselling varies across countries considerably [4],[5][7]. PLHIV who were unemployed or worked part time, have household members with HIV and religion were associated with regular counselling attendance. These results suggest that contrary to other studies there seemed to be no financial constraints among those with part-time or unemployment to attend counselling [6],[10]. But our data also indicate that people working full-time may have time constraints to attend the counselling. Reasons may include that counselling takes place during working hours [11].

Religion was associated with counselling attendance, but we have no explanation for this finding and this has not been investigated previously in Indonesia. Furthermore, older age, having hepatitis B or C, distance to hospital, as well as male-to-male transmission were characteristics of PLHIV not attending counselling regularly. This suggests that older patients, patients with co-morbidities as well as patients living further awayfrom the clinics may need additional support to be able to attend counselling. Possibly, some patients perceived homophobia among health providers which may have kept them from attending counselling [12]. It has been shown previously that attending counselling increases social support and the feeling of being accepted. It also helps PLHIV to cope with fear and the burden of side effects when

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taking ART [4]. Therefore, it is desirable to increase the rate of regular counselling attendance. Solutions may be to adjust the schedule of counselling to PLHIV needs and increase support to access by referring PLHIV to the nearest community health center which provided ART and counselling. Furthermore, recruiting lay counsellors from the gay community may help this group to attend counselling [13]. Finally, technology may also offer solutions [4],[13]. For example, internet-based counselling for PLHIV may have the advantage of providing more privacy than face-to-face counselling [5]. Pictographs, short message service, and social media, as learning and communication tools may be also used for counselling to explain the concept of ART or respond to questions [12],[14].

Strength and limitations

With this study, we provided useful information on the barriers to attend counselling in an urban area from a large group of PLHIV. Although, we were able to achieve a moderate response rate, PLHIV not regularly attending the clinics and PLHIV refusing to complete the questionnaire may have other barriers to attend counselling. We were able to include a considerable number of factors in our analysis, but there may be other factors associated with counselling attendance which we were not able to capture in a questionnaire [15].

Furthermore, there was some missing data in the questionnaires, but except for income these were between 0 and 2.2% and therefore should not have an impact on our findings. Finally, since we only collected data in an urban context, our results may not be generalizable to rural areas. Further studies should be conducted in other settings and provinces of Indonesia to identify other potential barriers which may affect PLHIV. Since this study is a cross-sectional study, future work should be undertaken to assess counselling attendance and dropout rates over time. Furthermore, the competences of counsellors and stigma have not been measured in this study [16]. Counselling should be done with respect for PLHIV without PLHIV

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feeling obliged to notify their sexual partners [17]. More work should be done in this area to be able to tailor services better to the needs of PLHIV to improve health outcomes.

CONCLUSIONS

In conclusion, while about 80% of patients regularly attended counselling sessions, services should be reviewed to ensure that they are near home and fit the needs of older patients or patients with co-morbidities and minorities. Tailoring counselling may improve attendance.

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Table 1: Factors associated with patient participation in HIV counselling at Prof. Sulianti Saroso Infectious Disease Hospital, Jakarta, N= 880

Characteristic Baseline Not regulary attended

Regulary

Attended OR (95% CI)Univariate OR (95% CI)Multivariate

Gender

Male 626 (71.1%) 148 478 REF

Female 235 (26.7%) 39 196 1.56 (1.05-2.30)

Age

≤ 30 years old 221 (25.1%) 37 184 REF

31 -40 years old 487( 55.3%) 103 384 0.75 (0.5-1.13) 0.55 (0.32-0.93) ≥41 years old 168 (19.1) 50 118 0.48 (0.29-0.77) 0.30 (0.16-0.55) Marital status

Not married 311 (55.3%) 74 237 REF

Married 429 (48.8) 83 346 1.30 (0.91-1.85) Divorced/separa

ted 132 (15.0) 32 100 0.98 (0.61-1.57)

Education

Primary or less 32 (3.6%) 6 26 REF

Secondary 719 (81.7%) 158 561 0.82 (0.33-2.03) Tertiary 117 (13.3%) 25 92 0.85 (0.30-2.29) Hours worked Full-time 483 (54.9%) 148 335 REF Part-time 186 (21.3%) 35 168 13.25 (5.74-30.58) 10.71 (4.09-28.02) Not working 203 (23.3%) 6 180 2.12 (1.40-3.20) 1.88 (1.03-3.44) Income ≤2.5 mil 282 (32.0%) 67 215 REF 2.5 – 5 mil 276 (31.4%) 43 233 1.69 (1.10-2.58) 5 – 10 mil 56 (6.4%) 16 40 0.78 (0.41-1.48) >10 mil 14 (1.6%) 3 11 1.14 (0.31-4.22) No income 86 (9.8%) 27 59 0.68 (0.40-1.16) Religion Islamic 536 (60.9%) 131 405 REF Christian 272 (30.9%) 41 231 1.82 (1.24-2.68) 1.81 (1.21-2.94) Other 58 (6.6%) 14 44 1.01 (0.54-1.91) Other factors Hepatitis B or C co-infection No 782 (88.9%) 155 627 REF Yes 89 (10.1%) 33 56 0.42 (0.26-0.67) 0.42 (0.24-0.75) Reported history of IDU No 512 (58.2%) 111 401 REF Yes 354 (40.2%) 79 275 0.96 (0.69-1.34)

Reported household member with HIV

No 756 (85.9%) 178 578 REF Yes 124 (14.1%) 12 112 2.87 (1.55-5.36) 3.31 (1.70-6.44) Transmission Source Heterosexual 468 (53.2%) 92 376 REF Homosexual 39 (4.4%) 18 21 0.29 (0.15-0.56) 0.13 (0.04-0.44) IVDU 77 (40.1%) 77 276 0.88 (0.62-1.23) Other mode of transmission 2 (0.9 %) 2 6 0.73 (0.15-3.70) Distance <10km 504 (57.3%) 85 419 REF 10km-20km 211 (24.0%) 60 151 0.51 (0.35-0.75) > 20km 165 (18.8%) 45 120 0.54 (0.36-0.82) 0.56 (0.33-0.93)

Years since HIV diagnosis

<2 years 315 (35.8%) 65 250 REF

2-5 years 346 (39.3%) 68 278 0.94 (0.64-1.38)

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REFERENCES

[1] R. Pendse, S. Gupta, D. Yu, and S. Sarkar, “HIV/AIDS in the South-East Asia region: progress and challenges.,” J. virus Erad., vol. 2, no. Suppl 4, pp. 1–6, 2016.

[2] World Health Organization, “Review of the national health sector response to HIV in the Republic of Indonesia,” Geneva, 2017.

[3] C. Guidelines, “CONSOLIDATED GUIDELINES on,” 2013.

[4] C. E. Kennedy, V. A. Fonner, M. D. Sweat, F. A. Okero, R. Baggaley, and K. R. O’Reilly, “Provider-initiated HIV testing and counseling in low- and middle-income countries: A systematic review,” AIDS Behav., vol. 17, no. 5, pp. 1571–1590, 2013.

[5] Amar Shireesh Kanekar, “HIV/AIDS Counseling Skills and Strategies: Can Testing and Counseling Curb the Epidemic?,” Int J Prev Med., vol. Jan-Mar; 2, 2011.

[6] M. Posse, F. Meheus, H. Van Asten, A. Van Der Ven, and R. Baltussen, “Barriers to access to antiretroviral treatment in developing countries: A review,” Trop. Med. Int. Heal., vol. 13, no. 7, pp. 904–913, 2008.

[7] J. E. Haberer et al., “Improving antiretroviral therapy adherence in resource-limited settings at scale: A discussion of interventions and recommendations,” J. Int. AIDS Soc., vol. 20, no. 1, pp. 1–15, 2017.

[8] E. R. N. Weaver, M. Pane, T. Wandra, C. Windiyaningsih, Herlina, and G. Samaan, “Factors that influence adherence to antiretroviral treatment in an urban population, Jakarta, Indonesia,” PLoS One, vol. 9, no. 9, pp. 1–7, 2014.

[9] Kementerian Kesehatan Republik Indonesia - Direktorat Jenderal Pengendalian Penyakit dan Penyehatan Lingkungan, Pedoman Nasional Tatalaksana Klinis Infeksi HIV dan Terapi Antiretroviral pada Orang Dewasa. 2011.

[10] D. M. Tuller, D. R. Bangsberg, J. Senkungu, N. C. Ware, N. Emenyonu, and S. D. Weiser, “Transportation costs impede sustained adherence and access to HAART in a clinic population in Southwestern Uganda: A qualitative study,” AIDS Behav., vol. 14, no. 4, pp. 778–784, 2010. [11] M. N. N. Wagener, S. E. M. E. M. van Opstal, H. S. S. Miedema, E. C. M. C. M. Van Gorp, P.

D. D. M. D. D. M. Roelofs, and R. P. Wagener MN, van Opstal SEM, Miedema HS, van Gorp ECM, “Work-related stigma and disclosure: A daily challenge for people living with HIV,” Work, vol. 58, no. 4, pp. 537–548, 2017.

[12] V. Chakrapania, P. A. Newmanb, M. Shunmugama, and R. Dubrowc, “Barriers to free antiretroviral treatment access among kothi-identified men who have sex with men and aravanis (transgender women) in Chennai, India,” AIDS Care - Psychol. Socio-Medical Asp. AIDS/HIV, vol. 23, no. 12, pp. 1687–1694, 2011.

[13] P. Keogh, “How to be a healthy homosexual: Hiv health promotion and the social regulation of gay men in the united kingdom,” J. Homosex., vol. 55, no. 4, pp. 581–605, 2008.

[14] K. E. Muessig, S. LeGrand, K. J. Horvath, J. A. Bauermeister, and L. B. Hightow-Weidman, “Recent mobile health interventions to support medication adherence among HIV-positive MSM,” Curr. Opin. HIV AIDS, vol. 12, no. 5, pp. 432–441, 2017.

[15] C. W. Holtzman et al., “Mapping Patient–Identified Barriers and Facilitators to Retention in HIV Care and Antiretroviral Therapy Adherence to Andersen’s Behavioral Model,” AIDS Care, vol. 27, no. 7, pp. 817–828, 2015.

[16] A. B. Sarah Finocchario Kessler, Delwyn Catley, Domonique Thomson and and K. G. Ewing, Jannette Berkley-Patton, “Patient Communication Tools to Enhance ART Adherence Counseling in Low and High Resource Settings,” Patient Educ Couns, vol. 89, no. 1, pp. 163– 170, 2012.

[17] B. Gerbert et al., “Reframing ‘Prevention with Positives’: Incorporating Counseling

Techniques That Improve the Health of HIV-Positive Patients,” AIDS Patient Care STDS, vol. 20, no. 1, pp. 19–29, 2006.

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CONCLUSIONS

In conclusion, while about 80% of patients regularly attended counselling sessions, services should be reviewed to ensure that they are near home and fit the needs of older patients or patients with co-morbidities and minorities. Tailoring counselling may improve attendance.

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CHAPTER 3

Chapter 3.1

The Association between Ethnicity,

Stigma, Beliefs about Medicines and

Adherence in People Living with HIV in a

Rural Area in Indonesia

Sianturi, EI, Perwitasari, DA, Islam, MA, Taxis, K.

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Abstract

Background: Indonesia is one of Asia’s countries with the fastest growing rate of human

immunodeficiency virus (HIV) infections according to the World Health Organization (WHO). The prevalence of HIV infections in the province of Papua is 2.4% which is 24 times higher than the national rate in Indonesia. This study aimed to investigate the association between stigma, beliefs about medicines, sociodemographic characteristics including ethnicity and adherence in People living with HIV (PLHIV) in Papua, Indonesia.

Methods: We conducted a cross-sectional study using questionnaires. We included

participants from two hospital-outpatient clinics who were on antiretroviral treatment (ART) for more than six months, were at least 18 years old, and signed informed consent. Participants completed the Medication Adherence Rating Scale (MARS), Beliefs about Medicines Questionnaire (BMQ), an HIV stigma scale and questions on demographic information. Data on antiretroviral medications were collected from medical records. The outcome was self-reported adherence as measured by the MARS using an 80% cut-off score. Multivariate logistic regression was used to analyse the data.

Results: Overall, 331 out of 363 eligible participants were included with a mean age of 33.3

(± 9.4) years, 61.6% were female, 67.1% were Papuan. A total of 65.9% of participants were adherent. Being Papuan decreased the likelihood of adherence (odds ratio (OR) = 0.53; 95% confidence interval (CI) = 0.32-0.89). Feeling more distant, a stigma type, also decreased the likelihood of adherence (OR = 0.93; 95% CI = 0.88-0.99).

Conclusions: The ethnicity of being Papuan and taking a distance to others were associated

with non–adherence. Targeted interventions should be developed to improve adherence in this group.

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BACKGROUND

More than 36 million people who are infected with the human immunodeficiency virus (HIV)

worldwide require antiretroviral therapy (ART) to reduce mortality and the number of new HIV infections [2]. ART is a lifetime medication and adherence to treatment is necessary to be effective [3]. Based on a definition by the World Health Organization (WHO), we understand adherence to be the extent to which a person’s behavior in taking medication corresponds with agreed recommendations from a health care provider [4]. Stigma, family responsibilities, and problems with schedule and routine have been recognized as barriers to adherence [5].

Stigma is understood as a society’s attitude in disgracing a person or group [6]. Feeling stigmatized is very common in people living with HIV (PLHIV). PLHIV can notice the stigma resulting in marginalizing behavior towards the PLHIV [7]. It has been shown that stigmatized PLHIV were less able to manage their disease [8]. Previous studies have also shown that stigma was a significant predictor for a lower level of ART adherence in developing and developed countries [9].

Beliefs about Medicines is a concept of cognitive representation of medicines which has been introduced by Horne et al [10]. They developed a questionnaire to quantify people’s beliefs of the necessity of taking medications versus concerns about adverse effects. In particular, having concerns about adverse effects and not being convinced of the necessity of the

medicines have been found to be associated with non-adherence to ART [11]. Providing

information and communicating about the complexity of ART and possible adverse effects may improve adherence [12].

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Papua is the easternmost island of Indonesia. In the province of Papua, the majority of the population are indigenous Papuans. Ethnic non-Papuans are migrants from other Indonesian islands, mostly to seek employment. Indonesia is one of Asia’s countries with the fastest growing rate of HIV infections according to the Indonesian Ministry of Health and WHO. The prevalence of HIV infections in the province of Papua is 2.4% which is 24 times higher than the national rate in Indonesia. Of the 25.000 people living with acquired immune deficiency syndrome (AIDS) in Papua [13], less than 6000 PLHIV are on ART [14]. The main mode of transmission is through unprotected sex between heterosexuals [13]. In contrast to other areas in Indonesia, most of the inhabitants of Papua are Christians.

In 2014, the Indonesian government set the strategic target to have 80% of PLHIV covered by ART over 5 years [15]. This may effectively decrease the epidemic. Maintaining adherence to ART has been regarded as a major component to achieve this goal. A number of studies have investigated the level of ART adherence in Indonesia, but so far, these merely covered urban cities in Indonesia with a different sociodemographic and epidemiological context to Papua [15],[16]. Only one Indonesian study explored the effect of stigma, again in an urban population not using a validated scale to assess stigma [17]. As far as we are aware, beliefs about medicines have not been studied systematically in Indonesia. Understanding which factors are associated with low medication adherence is the base to develop interventions to improve treatment of HIV in rural areas like Papua.

This study aimed to investigate the association between stigma, beliefs about medicines, sociodemographic characteristics including ethnicity and adherence in people living with HIV in Papua, Indonesia.

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METHODS

Study Design, setting and participants

This was a cross-sectional study using questionnaires to assess stigma, beliefs about medicines and adherence to medication. The participants were recruited from the outpatient clinics of one public hospital and one private hospital in Jayapura. These are two out of three hospitals providing HIV care in Jayapura. We have selected those two hospitals as they were the first ones to provide HIV care by teams of specialists for 10 years. ART is dispensed free of charge to patients.

Participants were included if they were at least 18 years old, were on ART for more than six months, and signed informed consent. Patients were excluded if more than 50% of data was missing. Participants were recruited and informed about the study while they were collecting their ART in the hospital. The recruiters, one pharmacist and three nurses who were health care professionals from the two HIV study hospitals, explained the aim of the study. They also emphasized that all information was kept confidential and that the decision whether to participate or not did not affect their treatment in any way. After the participants signed the informed consent, an appointment to complete the questionnaires was made for the following month as part of their next visit to the hospital.

The sample size was calculated based on the use of a two tailed test with a level of significance of 0.05. It was assumed that approximately 77% of the population were adherent [17]. Therefore, at least 284 participants were required to conduct the study.

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Instruments

We have chosen to assess adherence [18], beliefs about medicines [10] and stigma [19] with widely used instruments [11],[20],[21].

Adherence

We used the self–reported Medication Adherence Rating Scale (MARS) [18]. This consists of 10 questions. This questionnaire assessed the patients’ medication taking behavior in the past week. An example of a statement is: “I take my medication only when I am sick”. The response is binary, yes/no. A total MARS score is calculated as the sum of all items with a maximum score of 10 [18]. A higher total score indicated higher levels of adherence. We dichotomized the response into adherence and non-adherence. Sensitivity analyses were performed with MARS scores of 7, 8 and 9 as the cut-off (Appendix). The cut-off score of 8 was the most sensitive and was therefore used for the analysis.

HIV stigma

The HIV Stigma-Sowell scale consists of 13 questions. These 13 items represent 3 types of stigma, namely distancing, blaming and discrimination [22]. A question representing distancing is: ”I thought other people were uncomfortable being with me”. A question representing blaming is: “I felt I would not get good health care if people knew about my illness”. A question representing discrimination is: “I felt compelled to change my residence because of my illness”. Answers are scored on a 4 point Likert scale (as: 1= not at all, 2= rarely, 3= sometimes and 4= often.) The distancing and blaming scales were assessed with 4 questions each. The discrimination scale was assessed with 5 questions. The total score ranges from 13 to 52 with a higher total score indicating a higher level of stigma.

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Beliefs about Medicines Questionnaire (BMQ)

The BMQ assesses patient’s concepts about medication use in general and patient’s beliefs about the medication they use [10]. The BMQ-General part of the questionnaire consists of two scales asking about their views on overuse and harm related to medication (four questions each). An example of a statement on overuse is: "doctors use too many medicines". An example of a statement on harm is: "most medicines are addictive." The BMQ-Specific part consists of two scales about the necessity and concerns of patients regarding their medicine (5 questions each). An example of a statement on necessity is: "my antiretroviral medication protects me from becoming worse". An example of a statement on concern is: "I am sometimes worried about becoming too dependent on antiretroviral medication”. All 18 statements were scored on a 5-point Likert scale as 1= strongly disagree, 2= disagree, 3= uncertain, 4= agree, 5= strongly agree. The total from every scale of the BMQ was calculated. Higher total scores on necessity indicated patients being positive and seeing the advantages taking their medication. Higher total scores on concern, overuse, and harm indicated concerns about the treatment.

Translation

Since all instruments were developed and validated in English, we translated the instruments forwards into Bahasa Indonesia and backwards into English. The forward translation was done by two Indonesian certified translators. Both versions were assessed by DPA as proofreader and reviewer with a lot of experience in translating questionnaires. A final, reconciled Bahasa version was agreed on. This version was back-translated by an English native speaker who had no information about the original versions of the questionnaires. The backward translation was modified several times because the target language does not recognize verb tenses [1]. Therefore, the final version included words related to time. The

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final questionnaires were tested in 67 PLHIV who did not participate in the main study. The Cronbach’s alpha coefficient to test the internal consistency of the questionnaires was: 0.94 for the MARS scale, 0.82 for the HIV stigma scale and 0.6 for the BMQ scale, indicating good to moderate consistency. Participants indicated they understood the questionnaires.

Data Collection

At the appointment, participants were handed out the three paper-based questionnaires and were also given a questionnaire to collect sociodemographic information (age, gender, marital status, whether or not they had children, education, employment, sexual orientation, religion, ethnicity, receiving support in medicine-taking from social network, and ART regimen). They completed the questionnaires in the waiting area of the hospital. The recruiters were available for questions. Information about the age and types of ART were collected from PLHIV’s medical records. Data were collected between September and November 2016.

Descriptive statistics

The sociodemographic variables were analyzed using descriptive statistics. The categorical variables were presented as frequencies and percentages. The continuous variables were summarized either as mean (standard deviation) or median (interquartile range) depending on the nature of the variables. The outcome variable was binary coded as non-adherent and adherent. Chi-square test for categorical and independent sample t-test or Mann-Whitney U test were used to determine the association between the independent variables and adherence. We included the following independent variables in the analyses: age, gender, marital status,

having children,education, employment, sexual orientation, religion, ethnicity, social support

in medicine-taking, ART regimen, distancing, blaming and discrimination of the stigma scale and necessity, concern, overuse and harm from the BMQ questionnaire.

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39 Statistical modelling

We included all independent variables with a p-value of <0.20 in the descriptive analysis in a univariate logistic regression to examine the effect of the independent variables on adherence. Then, independent variables with a p-value of <0.20 from the univariate analysis were included in the multivariate logistic regression analysis [23]. In the multivariate logistic regression analysis, we used a backward elimination procedure to select the final model with all independent variables being significant with a p-value of ≤ 0.05. Finally, odds ratios of independent variables and their 95% confidence interval were presented. All analyses were done using two-tailed tests at a significance level of 0.05. The statistical analyses were performed using the Statistical Program for Social Sciences (SPSS) version 24.0 for Windows.

RESULTS

Study Population

We identified 1305 PLHIV starting ART since 2006, successfully contacted and screened 923 PLHIV of whom 388 were eligible. Finally, 363 participants agreed to sign the informed consent and completed the questionnaire (response rate 93%). Thirty-two participants had to be excluded. Two participants were excluded because on inspection of their medical records, they were below 18 years of age and 30 participants were excluded because of missing sociodemographic data. Finally, 331 participants were eligible for data analysis.

Sociodemographic characteristics of participants

The mean age of participants was 33.3 years (SD= 9.4), 61.6% were female and 67.1% had a

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had a high school education). More than half of the participants (58.0%) reported having paid employment. The majority (96.4%) were heterosexual, 0.9% were bisexual, and 2.7% were gay. The majority reported Protestantism as their religion (74.6%). A fixed dose combination (FDC) was used as a single tablet ART by 43.5% of all participants. The majority of participants (65.9%) received support in medicine-taking from their social network (Table 1).

Overall, 65.9% of participants reported to be adherent. There were no significant differences in gender, marital status, having children, education, employment, sexual orientation, religion, and type of regimen between non-adherent and adherent participants. Significant differences were observed in age and ethnicity between adherent and non-adherent participants (Table 1). Table 2 shows that the most common reasons for being non-adherent were forgetting to take ART (72.1%), carelessly taking ART (51.4%) and attitudes towards medication (55.9%).

Multivariate Logistic Regression

Ethnicity and distancing were significantly associated with adherence. The sociodemographic factors (age and employment) and the other independent variables (blaming, concern, and harm) were not associated with adherence. Papuans had half the odds of being adherent than non-Papuans (OR= 0.53; 95% CI = 0.32-0.89). Feeling distanced also decreased the odds of being adherent (OR= 0.93; 95% CI= 0.88-0.99).

DISCUSSION

This cross-sectional study showed that based on self-reporting, more than one-third of PLHIV in Papua, Indonesia were non-adherent. This was lower than in another Indonesian study performed in an urban area [17], but results are difficult to compare because of differences in methods and instruments used. In line with previous studies, the main reasons for

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adherence were forgetfulness, being careless about taking ART, and experiencing adverse effects [24]. Ethnicity and experiencing stigma were significantly associated with non-adherence.

Strength and Limitation

This was the first study to examine ART adherence in a predominantly heterosexual group of PLHIV living in rural Indonesia where data is scarce. We recruited participants when they came to pick up their medication, in one region in two hospitals in Indonesia with about 10 years of experience to care for HIV patients. Our data may not be generalizable to other settings and regions. For practical reasons, we used hospital health care professionals to recruit patients. We assured patients that participation was voluntary, but some patients may have felt obliged to participate. We used questionnaires and achieved the sample size needed. The study also presents some caveats that need to be discussed.

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Table 1 Socio-demographic characteristics of participants for adherent vs non-adherent participants

Characteristics Total (n= 331) Non-adherent (n= 113; 34.1 %) Adherent (n= 218; 65.9%) p-value Age (mean, SD) 33.3 (9.4) 31.3 (9.4) 34.3 (9.2) 18-27 years 43 (38.1) 53 (24.3) 0.019 28-37 years 44 (38.9) 91 (41.7) Above 38 years 26 (23.0) 74 (33.9) Gender 0.202 Female 204 (61.6) 75 (66.4) 129 (59.2) Male 127 (38.4) 38 (33.6) 89 (40.8) Marital Status 0.331 Not-married 104 (31.4) 31 (27.4) 73 (33.5) Married 200 (60.4) 70 (61.9) 130 (59.6) Divorced/widowed 27 (8.2) 12 (10.6) 15 (6.9) Having Children 0.259 No 101 (30.5) 30 (26.5) 71 (32.0) Yes 230 (69.5) 83 (73.5) 147 (67.4) Education 0.309 Elementary school 7 (2.1) 1 (0.9) 6 (2.8) Junior high school 28 (8.5) 7 (6.2) 21 (9.6) High school 70 (21.1) 30 (26.5) 40 (18.3) Vocational 171 (51.7) 57 (50.4) 114 (52.3) University 8 (2.4) 4 (3.5) 4 (1.8) Master 47 (14.2) 14 (12.4) 33 (15.1) Employment 0.076 Unpaid 139 (42.0) 55 (48.7) 84 (38.5) Paid 192 (58.0) 58 (51.3) 134 (61.5) Sexual Orientation 0.335 Homosexual 9 (2.7) 1 (0.9) 8 (3.7) Bisexual 3 (0.9) 1 (0.9) 2 (0.9) Heterosexual 319 (96.4) 111 (98.2) 208 (95.4) Religion 0.464 Protestant 247 (74.6) 88 (77.9) 159 (72.9) Catholic 22 (6.6) 8 (7.1) 14 (6.4) Moslim 62 (18.7) 17 (15.0) 45 (20.6) Ethnicity 0.023 Non-Papuan 109 (32.9) 28 (24.8) 81 (37.2) Papuan 222 (67.1) 85 (75.2) 137 (62.8)

Support in medicine-taking from social network 0.280

No support 113 (34.1) 43( 38.1) 70 (32.1) Support 218 (65.9) 70 (61.9) 148 (67.9) Regimen 0.248 Duv-EFV 9 (1.2) 1 (0.9) 8 (3.7) Duv-NEV 29 (2.7) 7 (6.2) 22 (10.1) FDC 144 (43.5) 48 (42.5) 96 (44.0) TDF-3TC-Aluvia 2 (0.6) 1 (0.9) 1 (0.5) TDF-3TC-EFV 59 (17.8) 18 (15.9) 41 (18.8) TDF-3TC-NEV 10 (3.0) 2 (1.8) 8 (3.7) TDF-3TC-Aluvia 3 (0.9) 1 (0.9) 2 (0.9) TDF-FTC-EFV 70 (21.1) 33 (29.2) 37 (17.0) TDF-FTC-NEV 1 (0.3) 0 (0.0) 1 (0.5) *SD= Standard Deviation, Duv= Duviral, EFV= Efavirenz, NEV= Nevirapine, FDC= Fixed Dose Combination (TDF+3TC+Efavirenz),TDF= Tenofovir, 3TC= Lamivudine, FTC= Emtricitabine

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Table 2 Medication Adherence Rating Scale (MARS) questionnaire (N= 113 non-adherent participants)

No The MARS question Frequency of responses indicating non-adherence (%)

N (%)

1 Do you ever forget to take your medication? 80 72.1

2 Are you careless at time about taking your medication? 57 51.4 3 When you feel better, do you sometimes stop taking your medication? 40 36.0 4 Sometimes if you feel worse when you take the medication, do you stop taking it? 33 29.7

5 I take medication only when I am sick 39 35.1

6 It is unnatural for my mind and body to be controlled by medication 62 55.9

7 My thoughts are clear on medication 31 27.9

8 By staying on medication, I can prevent getting sick 33 29.7 9 I feel weird, like a "zombie" on medication 45 40.5

10 Medication makes me feel tired and sluggish 43 38.7

Table 3 Medians and IQR for the scales used to assess participant's stigma, and Beliefs about Medicines (BMQ) comparing non-adherent with adherent

*IQR Inter Quartile Range

Table 4 Univariate and multivariate analyses on the association of variables with adherence

Characteristics Univariate

OR (95% CI) p-value OR (95% CI) Multivariate p-value

Age 18-27 years ref

28-37 years 1.67 (0.97-2.87) 0.060 ≥ 38 years 2.30 (1.26-4.21) 0.006

Ethnicity Non-Papuan ref ref

Papuan 0.55 (0.33-0.92) 0.024 0.53 (0.32-0.89) 0.017 Employment Unpaid ref

Paid 1.51 (0.96-2.39) 0.077

Stigma Distancing 0.94 (0.88-1.00) 0.058 0.93 (0.88-0.99) 0.040 Blaming 0.93 (0.87-1.00) 0.053

BMQ Concern 0.95 (0.88-1.01) 0.155 Harm 0.94 (0.87-1.01) 0.135 *OR=Odds Ratio, CI= Confidence Interval

Variable Lowest-Highest

obtainable score Non-adherence Median (IQR) Adherence Median (IQR) Mann-Whitney U test Stigma Scale Distancing Median (IQR) 4.0-16.0 9.0 (6.0-11.5) 8.0 (4.0-11.0) 0.03 Blaming Median (IQR) 4.0-16.0 9.0 (6.0-10.5) 7.0 (5.0-10.0) 0.03 Discrimination Median (IQR) 5.0-20.0 11.0 (8.0-13.5) 10.0 (7.0-13.0) 0.24 Total Stigma 13.0-52.0 27.0 (20.0-35.0) 25.0 (19.0-34.0) BMQ Scale Necessity Median (IQR) 5.0-25.0 18.0 (16.0-20.0) 18.0 (16.0-20.0) 0.62 Concern Median (IQR) 5.0-25.0 16.0 (14.0-19.0) 16.0 (14.0-18.0) 0.05 Overuse Median (IQR) 4.0-20.0 12.0 (10.0-14.0) 12.0 (10.0-14.0) 0.48 Harm Median (IQR) 4.0-20.0 10.0 (8.0-12.0) 9.0 (8.0-11.0) 0.06 Total BMQ 18.0-90.0 57.0 (52.0-62.0) 55.0 (50.0-60.0)

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We chose self-reporting to assess adherence. Giving socially desirable answers and recall-bias are among the disadvantages of this method [25]. It was outside the scope of this cross-sectional study to use other methods. The two study hospitals used paper-based medical records and there were insufficient data available to calculate adherence using for example refill rates. Previous studies suggest that in PLHIV, self-reporting is a suitable method [26]. We used the MARS questionnaire that has been developed and validated in schizophrenia

patients [18] and the use in PLHIV so far was limited [27]. Therefore, a cut-off point for

non-adherence has not been defined previously. In our study, PLHIV had to achieve a score of at least 8 out of 10 to be adherent. This is relatively high compared to studies in mental health. We chose this cut-off after using sensitivity analysis. This cut-off point is acceptable to be used since there is small difference between using 80% and 90% adherence due to virological failure [28]. Finally, the available data were insufficient to investigate the association between

adherence and clinical proxy outcomes such as CD4 counts or viral load. In our setting, those

outcomes are infrequently assessed because of lack of resources.

Ethnic group was found to be associated with adherence. Being Papuan increased the likelihood of being non-adherent. One of the reasons for this could be the difficulties in communication between health professionals and PLHIV. Most of the health professionals are non-Papuans and therefore do not speak the local language. This is consistent with another study which revealed that miscommunication between PLHIV and health providers decreased the satisfaction with treatment due to lack of psychological support from health providers [29]. It also caused emotional stress and feeling of discomfort due to loss of self-confidence [30]. The most recognized complaints of PLHIV about physicians are related to communication, not clinical competencies [29]. More work is needed to investigate reasons for non-adherence in Papuans. Our findings highlight the importance to investigate the impact

University of Groningen Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with HIV Sianturi, Elfride