ABSTRACT

OBJECTIVE

To compile the instruments validated in Brazil for assessing adherence of people living with HIV to antiretroviral therapy.

METHODS

Scoping review using the Web of Science, Scopus, Medline (via PubMed), Embase, BDENF, CINAHL and Lilacs databases. In addition, the Preprints bioRxiv, Google Scholar and OpenGrey servers were checked. There was no language restriction for the search, and it considered articles published from the year 1996 onwards.

RESULTS

Three publications were included in the qualitative synthesis. Following were the instruments identified “Questionário para Avaliação da Adesão ao Tratamento Antirretroviral” (Questionnaire for Assessment of Adherence to Antiretroviral Treatment) developed in Porto Alegre (RS) and published in 2007; the “Escala de autoeficácia para adesão ao tratamento antirretroviral em crianças e adolescentes com HIV/Aids” (Self-efficacy Scale for Adherence to Antiretroviral Treatment in Children and Adolescents with HIV/Aids) developed in São Paulo (SP) and published in 2008; and the “WebAd-Q, um instrumento de autorrelato para monitorar a adesão à terapia antirretroviral em serviços de HIV/Aids no Brasil” (WebAd-Q, a self-report instrument to monitor adherence to antiretroviral therapy in HIV/Aids services in Brazil) developed in São Bernardo do Campo (SP) and published in 2018. The instruments were validated in Brazil, and presented statistically acceptable values for psychometric qualities.

CONCLUSION

The instruments to assess adherence of people living with HIV to antiretroviral therapy are validated strategies for the Brazilian context. However, their (re)use in different settings and contexts of the nation should be expanded. The use of these instruments by health professionals can improve the understanding of factors that act negatively and positively on antiretroviral therapy adherence, and the proposition of strategies intended to consolidate good adherence and intervene in the treatment of people with low therapeutic engagement.

HIV Infections, therapy; Medication Adherence; Treatment Refusal; HIV Long-Term Survivors; Review

INTRODUCTION

With the advent of antiretroviral therapy (ART) after 1987 in some parts of the world, and in Brazil since 1996, with public, free, and universal access, advances in the constitution and strategy of administration of antiretroviral drugs transformed the understanding about human immunodeficiency virus (HIV) infection worldwide, whether or not associated with acquired immunodeficiency syndrome (Aids), changing the focus from a fatal disease to a chronic infection¹1. Wang X, Parameswaran S, Bagul D, Kishore R. Does online social support work in stigmatized chronic diseases? A study of the impacts of different facets of informational and emotional support on self-care behavior in an hiv online forum. In: Proceedings of ICIS 2017; December 10-13; Seoul, South Korea [cited 2021 Jul 16]. Presentation; Nº 22. Available from: https://aisel.aisnet.org/icis2017/General/Presentations/22/
https://aisel.aisnet.org/icis2017/Genera... ,²2. Deeks SG, Lewin SR, Havlir DV. The end of AIDS: HIV infection as a chronic disease. Lancet. 2013;382(9903):1525-33. https://doi.org/10.1016/S0140-6736(13)61809-7
https://doi.org/10.1016/S0140-6736(13)61... .

Even with the prolonged remission of HIV described in literature³3. Hütter G, Nowak D, Mossner M, Ganepola S, Müssig A, Müßig A, et al. Long-term control of HIV by CCR5 Delta32/Delta32 stem-cell transplantation. N Engl J Med. 2009;360(7):692-8. https://doi.org/10.1056/NEJMoa0802905
https://doi.org/10.1056/NEJMoa0802905... ,⁴4. Gupta RK, Abdul-Jawad S, McCoy LE, Mok HP, Peppa D, Salgado M, et al. HIV-1 remission following CCR5Δ32/Δ32 haematopoietic stem-cell transplantation. Nature. 2019;568(7751):244-8. https://doi.org/10.1038/s41586-019-1027-4
https://doi.org/10.1038/s41586-019-1027-... , to date there is no cure, and the treatment that brings the viral load to an undetectable level (< 40 copies/ml) has as its main component the patient’s adherence to antiretroviral therapy⁵5. Lori EM, Cozzi-Lepri A, Tavelli A, Mercurio V, Ibba SV, Lo Caputo S, et al. Evaluation of the effect of protective genetic variants on cART success in HIV-1-infected patients. J Biol Regul Homeost Agents. 2020;34(4):1553-9. https://doi.org/10.23812/19-527-L
https://doi.org/10.23812/19-527-L... . HIV control and health maintenance are promoted by the continuous and appropriate use of the ART, whose effectiveness is linked to the intake of drugs as prescribed, determining adherence to treatment. For satisfactory adherence, the use of antiretroviral drugs should be as close as possible to the prescription provided by the healthcare team, in order to comply with schedules, doses, and other instructions⁶6. O’Connor J, Vjecha MJ, Phillips AN, Angus B, Cooper D, Grinsztejn B, et al. Effect of immediate initiation of antiretroviral therapy on risk of severe bacterial infections in HIV-positive people with CD4 cell counts of more than 500 cells per μL: secondary outcome results from a randomised controlled trial. Lancet HIV. 2017;4(3):e105-12 https://doi.org/10.1016/S2352-3018(16)30216-8
https://doi.org/10.1016/S2352-3018(16)30... . High levels of adherence have been consistently associated with better virologic, immunological, and clinical outcomes, with consequent increases in survival and quality of life for people living with HIV⁸8. Silva ACO, Reis RK, Nogueira JA, Gir E. Quality of life, clinical characteristics and treatment adherence of people living with HIV/AIDS. Rev Lat Am Enfermagem. 2014;22(6):994-1000. https://doi.org/10.1590/0104-1169.3534.2508
https://doi.org/10.1590/0104-1169.3534.2... . Additionally, considering that one of the pillars of the HIV epidemic control programs around the world is the strategy called U = U (undetectable = untransmissible), adherence to therapy has a positive impact on reducing the number of bound partner transmissions⁹9. Michienzi SM, Barrios M, Badowski ME. Evidence regarding rapid initiation of antiretroviral therapy in patients living with HIV. Curr Infect Dis Rep. 2021;23(5):7. https://doi.org/10.1007/s11908-021-00750-5
https://doi.org/10.1007/s11908-021-00750... ,¹⁰10. Wu C, Zhang B, Dai Z, Zheng Q, Duan Z, He Q, et al. Impact of immediate initiation of antiretroviral therapy among men who have sex with men infected with HIV in Chengdu, southwest China: trends analysis, 2008-2018. BMC Public Health. 2021;21(1):689. https://doi.org/10.1186/s12889-021-10580-8
https://doi.org/10.1186/s12889-021-10580... . On the other hand, drug treatment abandonment or incorrect adherence can facilitate infection by opportunistic diseases and lead to death. In short, non-adherence to antiretroviral therapy negatively impacts social and political aspects, both for the public investment made and for controlling the epidemic¹¹11. Ministério da Saúde (BR), Secretaria de Vigilância em Saúde. HIV/AIDS 2020. Bol Epidemiol. 2020 [cited 2021 May 8];Nº Espec:1-65. Available from: https://www.gov.br/saude/pt-br/centrais-de-conteudo/publicacoes/boletins/epidemiologicos/especiais/2020/boletim-hiv_aids-2020-internet.pdf
https://www.gov.br/saude/pt-br/centrais-... .

In recent years, Brazil has seen a decrease in the number of HIV infections. Between 2007 and 2020, 342,459 cases of HIV infection were reported to the Sistema de Informação de Agravos de Notificação (Brazilian Case Registry Information System)¹¹11. Ministério da Saúde (BR), Secretaria de Vigilância em Saúde. HIV/AIDS 2020. Bol Epidemiol. 2020 [cited 2021 May 8];Nº Espec:1-65. Available from: https://www.gov.br/saude/pt-br/centrais-de-conteudo/publicacoes/boletins/epidemiologicos/especiais/2020/boletim-hiv_aids-2020-internet.pdf
https://www.gov.br/saude/pt-br/centrais-... . The Unified Health System has sustained its actions to ensure diagnosis and treatment for HIV, even during the covid-19 pandemic. The Ministry of Health prepared a “Monitoramento durante a pandemia da covid-19 – dados relacionados ao HIV” (Monitoring during the covid-19 pandemic - HIV-related data) panel, in which it brought important information about the numbers of people who started antiretroviral therapy each year. For example, in 2019, a total of 68,482 patients adhered to the ART; the following year, in 2020, there were 55,180 new adhesions¹²12. Ministério da Saúde (BR), Departamento de Condições Crônicas e Infecções Sexualmente Transmissíveis. Painel de monitoramento de dados de HIV durante a pandemia da COVID-19. Brasília, DF; 2020 [cited 2021 May 8]. Available from: http://www.aids.gov.br/pt-br/painelcovidHIV#:~:text=LAI-,PaineldemonitoramentodedadosdeHIVduranteapandemia,prevençãoàinfecçãopelovírus.
http://www.aids.gov.br/pt-br/painelcovid... .

The barriers and facilitators for adherence to antiretroviral therapy are multifactorial, involving social, economic, systemic/professional (healthcare teams) issues, side effects to treatment, to the disease, and the uniqueness of the person living with HIV¹³13. World Health Organization. Diet, nutrition, and the prevention of chronic diseases: report of a joint WHO/FAO expert consultation. Geneva (CH): WHO; 2003 [cited 2021 Jul 16]. (WHO Technical Report Series; Nº 916). Available from: http://apps.who.int/iris/bitstream/handle/10665/42665/WHO_TRS_916.pdf;jsessionid=2DC8A9F3975036E927DA4EAB3FDD4ED7?sequence=1
http://apps.who.int/iris/bitstream/handl... . Each country and their regions may have specificities that could be configured as barriers to treatment; for example, countries such as Uganda, Tanzania, and Botswana may present obstacles in which hunger, waiting time for medication, and transportation costs are strong complicators for adhering to the ART¹⁴14. Hardon AP, Akurut D, Comoro C, Ekezie C, Irunde HF, Gerrits T, et al. Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care. 2007;19(5):658-65. https://doi.org/10.1080/09540120701244943
https://doi.org/10.1080/0954012070124494... . In Brazil, the main factors associated with non-adherence to therapy are sociodemographic aspects, such as age (young), marital status (single), self-reported skin color (non-white), education (low level), income (low socioeconomic status), and vulnerability to HIV/Aids, such as licit and illicit drug use, use of health services (non-adherence to visits and contact with more than one healthcare service), added with clinical laboratory follow-up (perception of side effects and complexity of the therapeutic regimen)¹⁵15. Resende NH, Miranda SS, Ceccato MGB, Haddad JPA, Reis AMM, Silva DI, et al. Drug therapy problems for patients with tuberculosis and HIV/AIDS at a reference hospital. Einstein (São Paulo). 2019;17(4):eAO4696. https://doi.org/10.31744/einstein_journal/2019AO4696
https://doi.org/10.31744/einstein_journa... ,¹⁶16. Bonolo PF, Gomes RRFM, Guimarães MDC. Adesão à terapia anti-retroviral (HIV/AIDS): fatores associados e medidas da adesão. Epidemiol Serv Saude. 2007;16(4):267-78. https://doi.org/10.5123/S1679-49742007000400005
https://doi.org/10.5123/S1679-4974200700... .

Due to the different measurement instruments adopted at regional level, there is no national estimate of adherence to antiretroviral therapy; however, a recent literature review found that this rate rages between 18% and 74.3% depending on the location¹⁷17. Garbin CAS, Gatto RCJ, Garbin AJI. Adesão à terapia antirretroviral em pacientes HIV soropositivos no Brasil: uma revisão da literatura. Arch Health Investig. 2017;6(2):65-70. https://doi.org/10.21270/archi.v6i2.1787
https://doi.org/10.21270/archi.v6i2.1787... .

Among the different instruments and techniques used to assess adherence of people living with HIV to therapy are the antiretroviral dispensation record¹⁸18. Gomes RRFM, Machado CJ, Acurcio FA, Guimarães MDC. Utilização dos registros de dispensação da farmácia como indicador da não-adesão à terapia anti-retroviral em indivíduos infectados pelo HIV. Cad Saude Publica. 2009;25(3):495-506. https://doi.org/10.1590/S0102-311X2009000300004
https://doi.org/10.1590/S0102-311X200900... , medical record analysis¹⁹19. Trombini ES, Schermann LB. Prevalência e fatores associados à adesão de crianças na terapia antirretroviral em três centros urbanos do sul do Brasil. Cien Saude Colet. 2010;15(2):419-25. https://doi.org/10.1590/S1413-81232010000200018
https://doi.org/10.1590/S1413-8123201000... , self-completion questionnaire²⁰20. Leite LHM, Papa A, Valentini RC. Insatisfação com imagem corporal e adesão à terapia antirretroviral entre indivíduos com HIV/AIDS. Rev Nutr. 2011;24(6):873-82. https://doi.org/10.1590/S1415-52732011000600008
https://doi.org/10.1590/S1415-5273201100... , simplified questionnaire for assessment of ART adherence-SMAQ21²¹21. Tufano CS, Amaral RA, Cardoso LRD, Malbergier A. The influence of depressive symptoms and substance use on adherence to antiretroviral therapy. A cross-sectional prevalence study. Sao Paulo Med J. 2015;133(3):179-86. https://doi.org/10.1590/1516-3180.2013.7450010
https://doi.org/10.1590/1516-3180.2013.7... , etc. It has been observed, however, that the proposals for this assessment in healthcare services in Brazil do not use validated instruments and techniques¹⁷17. Garbin CAS, Gatto RCJ, Garbin AJI. Adesão à terapia antirretroviral em pacientes HIV soropositivos no Brasil: uma revisão da literatura. Arch Health Investig. 2017;6(2):65-70. https://doi.org/10.21270/archi.v6i2.1787
https://doi.org/10.21270/archi.v6i2.1787... , which can lead to errors in verification and interpretation of results²²22. Jacques IJAA, Santana JM, Moraes DCA, Souza AFM, Abrão FMS, Oliveira RC. Avaliação da adesão à terapia antirretroviralentre pacientes em atendimento ambulatorial. Rev Bras Cien Saude. 2015 [cited 2021 Jul 16];18(4):303-8. Available from: https://periodicos.ufpb.br/index.php/rbcs/article/view/18326
https://periodicos.ufpb.br/index.php/rbc... .

This study aimed at tracking the instruments validated in Brazil to assess adherence of people living with HIV to antiretroviral therapy.

METHODS

Study Design

A scoping review is intended to address broad issues, focusing on more comprehensive results. This type of review rigorously and effectively identifies, examines, and systematizes a concept or unique trait of each study by identifying the nature of a broad field of knowledge²³23. Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18(1):143. https://doi.org/10.1186/s12874-018-0611-x
https://doi.org/10.1186/s12874-018-0611-... ,²⁴24. Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32. https://doi.org/10.1080/1364557032000119616
https://doi.org/10.1080/1364557032000119... . The scoping review is systematized, and some steps are required to conduct it. Among these steps, five stages are considered mandatory and one optional: (1) identification of the research question; (2) identification of relevant studies; (3) selection of studies; (4) data mapping; (5) pooling, analysis, and summary of data; and (6) consultation with researchers (optional)²³23. Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18(1):143. https://doi.org/10.1186/s12874-018-0611-x
https://doi.org/10.1186/s12874-018-0611-... ,²⁴24. Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32. https://doi.org/10.1080/1364557032000119616
https://doi.org/10.1080/1364557032000119... . This scoping review followed the guidelines of the checklist for systematic reviews and extension of meta-analyses for scoping reviews (Prisma-ScR)²⁵25. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467-73. https://doi.org/10.7326/M18-0850
https://doi.org/10.7326/M18-0850... .

Definition of the Question

In determining the research question, we decided to use the population (P), concept (C) and context (C)²⁶26. The Joanna Briggs Institute. Reviewers’ manual 2015: methodology for JBI scoping reviews. Adelaide (AU): JBI; 2015 [cited 2021 Jul 16]. Available from: https://nursing.lsuhsc.edu/JBI/docs/ReviewersManuals/Scoping-.pdf
https://nursing.lsuhsc.edu/JBI/docs/Revi... strategy. Here, (P) = people living with HIV who take antiretroviral therapy, (C) = instruments on adherence to antiretroviral therapy, and (C) = instruments validated in Brazil. The guiding question of this study was: Are there validated instruments in Brazil to assess adherence to antiretroviral therapy in people living with HIV?

Period

The search for studies was conducted in December 2020 by two researchers independently, avoiding bias in the number of articles.

Data Collection

Major healthcare databases were selected for search: Web of Science (WOS/ISI), Scopus, Medical Literature Analysis and Retrieval Online (Medline/PubMed), Embase, BDENF, The Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Literatura Latino-Americana e do Caribe em Ciências da Saúde (Lilacs). In addition, the Preprints bioRxiv, Google Scholar and OpenGrey servers were checked for their recognition in the academic community, and due to the expressive number of documents available.

Selection Criteria

This search included primary studies, descriptive studies, reviews, editorials, and manuals published from 1996 onwards (the beginning of antiretroviral therapy implementation in Brazil as a universal and public access policy against HIV), without language restriction. The available full texts that answered the research question were selected. Articles repeated in more than one data source were counted only once. All studies found in the search were imported into Rayyan^® software, where the entire analysis and selection process was performed.

Instrument Used to Collect Information

The descriptors used in this research were selected through the “Descritores em Ciências da Saúde” (DeCS) and “Medical Subject Headings” (MESH) databases, which are highlighted in Chart 1.

Data Processing and Analysis

Next, the data extracted by two independent reviewers were pooled, analyzed, and summarized. Questions and inconsistencies were analyzed and discussed by a third reviewer. Data were recorded in Microsoft Office Excel^® spreadsheet, version 2010, and presented as to identification (author and year), objective, method, main results, biases and limitations of the study²⁷27. Ursi ES, Galvão CM. Prevenção de lesões de pele no perioperatório: revisão integrativa da literatura. Rev Lat Am Enfermagem. 2006;14(1):124-31. https://doi.org/10.1590/S0104-11692006000100017
https://doi.org/10.1590/S0104-1169200600... .

RESULTS

The search in scientific literature for these validated instruments that assess patient adherence to antiretroviral therapy in Brazil resulted in the inclusion of three studies. The Figure shows the studies’ search, identification, exclusion, and selection process, according to the Prisma recommendations.

Following were the instruments identified “Questionário para Avaliação da Adesão ao Tratamento Antirretroviral” (Questionnaire for Assessment of Adherence to Antiretroviral Treatment) developed in Porto Alegre and published in 2007²⁸28. Remor E, Milner-Moskovics J, Preussler G. Adaptação brasileira do “Cuestionario para la Evaluación de la Adhesión al Tratamiento Antiretroviral”. Rev Saude Publica. 2007;41(5):685-94. https://doi.org/10.1590/S0034-89102006005000043
https://doi.org/10.1590/S0034-8910200600... ; the “Escala de autoeficácia para adesão ao tratamento antirretroviral em crianças e adolescentes com HIV/Aids” (Self-efficacy Scale for Adherence to Antiretroviral Treatment in Children and Adolescents with HIV/Aids) developed in São Paulo and published in 2008²⁹29. Costa LS, Latorre MRDO, Silva MH, Bertolini DV, Machado DM, Pimentel SR, et al. Validity and reliability of a self-efficacy expectancy scale for adherence to antiretroviral therapy for parents and carers of children and adolescents with HIV/AIDS. J Pediatr (Rio J). 2008;84(1):41-6. https://doi.org/10.2223/JPED.1751
https://doi.org/10.2223/JPED.1751... ; and the “WebAd-Q, um instrumento de autorrelato para monitorar a adesão à terapia antirretroviral em serviços de HIV/Aids no Brasil” (WebAd-Q, a self-report instrument to monitor adherence to antiretroviral therapy in HIV/Aids services in Brazil) developed in São Bernardo do Campo and published in 2018³⁰30. Vale FC, Santa-Helena ET, Santos MA, Carvalho WMES, Menezes PR, Basso CR, et al. Desenvolvimento e validação do Questionário WebAd-Q para monitorar adesão à terapia do HIV. Rev Saude Publica. 2018;52:62. https://doi.org/10.11606/S1518-8787.2018052000337
https://doi.org/10.11606/S1518-8787.2018... . All publications included in the qualitative synthesis of this scoping review were written in Portuguese and English, except the publication by Remor; Milner-Moskovics; Preussler, 2007²⁸28. Remor E, Milner-Moskovics J, Preussler G. Adaptação brasileira do “Cuestionario para la Evaluación de la Adhesión al Tratamiento Antiretroviral”. Rev Saude Publica. 2007;41(5):685-94. https://doi.org/10.1590/S0034-89102006005000043
https://doi.org/10.1590/S0034-8910200600... , published exclusively in Portuguese. The three publications included were found in the Scopus database. The information extracted from these studies on identification, objective, method, main results and biases/limitations are presented on Chart 2.

In summary, all studies included in this review validated their instruments, indicating statistically acceptable values regarding the psychometric qualities of each instrument. The main bias/limitation observed regards sample specificity, i.e., they suggest caution in using the instruments when verifying adherence to therapy by people from other regions of Brazil.

DISCUSSION

This scoping review was driven by the mapping of instruments to measure adherence to antiretroviral therapy by people living with HIV validated in Brazil. To the best of our knowledge, this is the first study that has gathered the strategies that could be used in Brazil. The identification of these instruments is the main finding of our study, and may guide the production of relevant knowledge for health service planning and management. This review also advances the field of adherence to ART by analyzing and compiling the instruments that, based on the results achieved, can be accurately and safely interpreted, in light of the psychometric rigor of each proposal.

Considering the positive impact on the quality of life of people living with HIV who present adequate adherence to antiretroviral therapy, as well as the harms of irregularity or discontinuation of treatment, it is important to highlight that adherence is a collaborative process linked to the principle of autonomy, which implies active participation of the patient in healthcare. This cooperation between the person living with HIV and the multiprofessional team promotes the acceptance and incorporation of the therapeutic scheme into the daily treatment routine³¹31. Santos AP, Alves TC, Navarro AM, Machado DRL. O desafio da adesão: a perspectiva do profissional de Educação Física. In: Bollela VR, Primo LP, Mauriz RCLF, Morejón KML, organizadores. Adesão: o presente e o futuro na luta para o controle do HIV/Aids. Ribeirão Preto, SP: FUNPEC-Editora; 2016. p. 57-76..

In studies involving public health in Brazil, the instruments presented in this review²⁸28. Remor E, Milner-Moskovics J, Preussler G. Adaptação brasileira do “Cuestionario para la Evaluación de la Adhesión al Tratamiento Antiretroviral”. Rev Saude Publica. 2007;41(5):685-94. https://doi.org/10.1590/S0034-89102006005000043
https://doi.org/10.1590/S0034-8910200600... may improve understanding of the prevalence, incidence, and risk factors for poor adherence to ART, as well as propose strategies to improve drug adherence. In addition, the use of validated instruments will contribute to health professionals’ interventions in healthcare and better outcomes on the overall well-being of people living with HIV. The questions in the instruments included in our review include the five determinants that act negatively or positively on long-term treatment adherence established by the World Health Organization: social and economic factors, health system/team, treatment, disease, and patient-related factors¹³13. World Health Organization. Diet, nutrition, and the prevention of chronic diseases: report of a joint WHO/FAO expert consultation. Geneva (CH): WHO; 2003 [cited 2021 Jul 16]. (WHO Technical Report Series; Nº 916). Available from: http://apps.who.int/iris/bitstream/handle/10665/42665/WHO_TRS_916.pdf;jsessionid=2DC8A9F3975036E927DA4EAB3FDD4ED7?sequence=1
http://apps.who.int/iris/bitstream/handl... .

The “Cuestionario para la Evaluación de la Adhesión al Tratamiento Antirretroviral” (CEAT-VIH), built in 2002³²32. Remor E. Valoración de la adhesión al tratamiento antirretroviral en pacientes VIH+. Psicothema (Oviedo). 2002 [cited 2021 Jul 16];14(2):262-7. Available from: http://www.psicothema.com/psicothema.asp?id=718
http://www.psicothema.com/psicothema.asp... , is a simplified instrument comprising 20 questions applicable to adults living with HIV. In addition to its validation in Brazil²⁸28. Remor E, Milner-Moskovics J, Preussler G. Adaptação brasileira do “Cuestionario para la Evaluación de la Adhesión al Tratamiento Antiretroviral”. Rev Saude Publica. 2007;41(5):685-94. https://doi.org/10.1590/S0034-89102006005000043
https://doi.org/10.1590/S0034-8910200600... , the CEAT-HIV has been validated in Canada³³33. Godin G, Gagné C, Naccache H. Validation of a self-reported questionnaire assessing adherence to antiretroviral medication. AIDS Patient Care STDS. 2003;17(7):325-32. https://doi.org/10.1089/108729103322231268
https://doi.org/10.1089/1087291033222312... , Portugal³⁴34. Reis AC, Lencastre L, Guerra MP, Remor E. Adaptação portuguesa do questionário para a avaliação da adesão ao tratamento anti-retrovírico-VIH (CEAT-VIH). Psicol Saude Doenças. 2009 [cited 2021 Jul 16];10(2):175-91. Available from: https://scielo.pt/pdf/psd/v10n2/v10n2a02.pdf
https://scielo.pt/pdf/psd/v10n2/v10n2a02... and Peru³⁵35. Tafur-Valderrama E, Ortiz C, Alfaro CO, García-Jiménez E, Faus MJ. Adaptación del “Cuestionario de Evaluación de la Adhesión al Tratamiento antirretroviral” (CEAT-VIH) para su uso en Perú. Ars Pharm. 2008 [cited 2021 Jul 16];49(3):183-98. Available from: https://revistaseug.ugr.es/index.php/ars/article/view/4967
https://revistaseug.ugr.es/index.php/ars... , suggesting its usefulness and validity to assess adherence to antiretroviral therapy in different contexts. In the validation study in Brazil, a significant and positive association was observed between the number of pills and viral load (r = 0.32; p = 0.01), suggesting that the number of pills of the therapy may be a hindering aspect for treatment adherence. Administration of a number ≤ 10 tablets is associated with better adherence. A significant inverse association was also observed between the degree of adherence to antiretroviral therapy and viral load (r = -0.48; p = 0.000). The optimal cutoff point suggested by the analysis is ≥ 76. The values below indicate insufficient adherence to treatment, and association with a detectable viral load. Viral load is the clinical indicator most adopted in studies evaluating the accuracy of instruments to assess adherence to ART, indicating the relevance of drug adherence for a better prognosis of disease recovery¹⁷17. Garbin CAS, Gatto RCJ, Garbin AJI. Adesão à terapia antirretroviral em pacientes HIV soropositivos no Brasil: uma revisão da literatura. Arch Health Investig. 2017;6(2):65-70. https://doi.org/10.21270/archi.v6i2.1787
https://doi.org/10.21270/archi.v6i2.1787... ,³⁶36. Simoni JM, Kurth AE, Pearson CR, Pantalone DW, Merrill JO, Frick PA. Self-report measures of antiretroviral therapy adherence: a review with recommendations for HIV research and clinical management. AIDS Behav. 2006;10(3):227-45. https://doi.org/10.1007/s10461-006-9078-6
https://doi.org/10.1007/s10461-006-9078-... . Most items of the CEAT-VIH met the expected quality criteria, and there were no lost values. It suggests that all questions were understood by patients and could be answered.

Some national studies used the CEAT-VIH, such as the one developed in the city of Fortaleza (CE)³⁷37. Galvão MTG, Soares LL, Pedrosa SC, Fiuza MLT, Lemos LA. Qualidade de vida e adesão à medicação antirretroviral em pessoas com HIV. Acta Paul Enferm. 2015;28(1):48-53. https://doi.org/10.1590/1982-0194201500009
https://doi.org/10.1590/1982-01942015000... , another in the mid-western region of the state of Rio Grande do Sul³⁸38. Primeira MR, Santos EEP, Züge SS, Magnago TSBS, Paula CC, Padoin SMM. Avaliação da adesão ao tratamento antirretroviral de pessoas vivendo com HIV. Saude Pesq. 2018;11(2):307-14. https://doi.org/10.17765/1983-1870.2018v11n2p307-314
https://doi.org/10.17765/1983-1870.2018v... , and in five specialized healthcare services in the state of Pernambuco³⁹39. Cabral JR, Cabral LR, Moraes DCA, Oliveira ECS, Freire DA, Silva FP, et al. Fatores associados à autoeficácia e à adesão da terapia antirretroviral em pessoas com HIV: teoria social cognitiva. Cien Cuid Saude. 2021;20:e58781. https://doi.org/10.4025/cienccuidsaude.v20i0.58781
https://doi.org/10.4025/cienccuidsaude.v... . Low adherence to antiretroviral therapy was observed in these different contexts. This reality that legitimizes the use of the CEAT-HIV as a tool to be used by health professionals in planning healthcare and intervention in situations that interfere with adherence.

To date, the study on validation and reproducibility of a self-efficacy scale for adherence to ART in parents or caregivers of children and adolescents living with HIV/Aids is the first in the Brazilian context. The good internal consistency of the scale in the total sample of children and adolescents (α = 0.87) showed high association between the scale items, suggesting that it is reliable to measure self-efficacy in children and adolescents with HIV/Aids, considering the perspective of parents/caregivers. It was also observed that children/adolescents adherent to antiretroviral therapy have higher expectancies of self-efficacy than those with insufficient adherence. This indicates that higher self-efficacy is associated with better TCD 4+ lymphocyte responses (r = 0.28; p = 0.040). The article on validation suggests that self-efficacy score 2 be used in clinical routine, as it is calculated by a predefined and easily applicable formula. On the other hand, score 1 - also presented in the article - is a score made up of the questions that most correlate with the questions in the scale, requiring the researcher to be familiar with factor analysis, in addition to the use of a statistical package.

Some national studies have used score 2 of the self-efficacy scale to assess adherence of children and adolescents to antiretroviral therapy, among them a study conducted in Brasilia-DF⁴⁰40. Guerra CPP, Seidl EMF. Adesão em HIV/AIDS: estudo com adolescentes e seus cuidadores primários. Psicol Estud. 2010 [cited 2021 Jul 16];15(4):781-9. Available from: https://www.scielo.br/j/pe/a/sHz6CRWjc8BnYJHFdhp7m9h/?lang=pt
https://www.scielo.br/j/pe/a/sHz6CRWjc8B... and another in the city of São Paulo⁴¹41. Lopes LK. A adesão ao tratamento antirretroviral por crianças e adolescentes com HIV/Aids [tese]. São Paulo: Faculdade de Saúde Pública da USP; 2012 [cited 2022 Feb 15]. Available from: https://www.teses.usp.br/teses/disponiveis/6/6132/tde-22012013-114651/publico/TESE.pdf
https://www.teses.usp.br/teses/disponive... . The study published in 2010⁴⁰40. Guerra CPP, Seidl EMF. Adesão em HIV/AIDS: estudo com adolescentes e seus cuidadores primários. Psicol Estud. 2010 [cited 2021 Jul 16];15(4):781-9. Available from: https://www.scielo.br/j/pe/a/sHz6CRWjc8BnYJHFdhp7m9h/?lang=pt
https://www.scielo.br/j/pe/a/sHz6CRWjc8B... observed difficulties related to taking medication outside the home environment, missed doses, and delays in taking the medication. In the study published in 2012⁴¹41. Lopes LK. A adesão ao tratamento antirretroviral por crianças e adolescentes com HIV/Aids [tese]. São Paulo: Faculdade de Saúde Pública da USP; 2012 [cited 2022 Feb 15]. Available from: https://www.teses.usp.br/teses/disponiveis/6/6132/tde-22012013-114651/publico/TESE.pdf
https://www.teses.usp.br/teses/disponive... , a high rate of adherence to ART was identified, regardless of the sociodemographic profile of parents/caregivers. The self-efficacy scale to assess adherence of children and adolescents to drug therapy consists of 21 questions. This scope of information allows greater detailing of the aspects that hinder non-adherence, as well as those that facilitate therapeutic adherence.

The WebAd-Q instrument is a self-administered questionnaire developed in services targeted to people living with HIV. In the development and validation study³⁰30. Vale FC, Santa-Helena ET, Santos MA, Carvalho WMES, Menezes PR, Basso CR, et al. Desenvolvimento e validação do Questionário WebAd-Q para monitorar adesão à terapia do HIV. Rev Saude Publica. 2018;52:62. https://doi.org/10.11606/S1518-8787.2018052000337
https://doi.org/10.11606/S1518-8787.2018... a high level of test-retest agreement and good agreement between the responses and other indicators of adherence were observed. Similar to the two other instruments included in this scoping review²⁸28. Remor E, Milner-Moskovics J, Preussler G. Adaptação brasileira do “Cuestionario para la Evaluación de la Adhesión al Tratamiento Antiretroviral”. Rev Saude Publica. 2007;41(5):685-94. https://doi.org/10.1590/S0034-89102006005000043
https://doi.org/10.1590/S0034-8910200600... ,²⁹29. Costa LS, Latorre MRDO, Silva MH, Bertolini DV, Machado DM, Pimentel SR, et al. Validity and reliability of a self-efficacy expectancy scale for adherence to antiretroviral therapy for parents and carers of children and adolescents with HIV/AIDS. J Pediatr (Rio J). 2008;84(1):41-6. https://doi.org/10.2223/JPED.1751
https://doi.org/10.2223/JPED.1751... , the scale of insufficient adherence obtained by WebAd-Q showed moderate association when compared to the clinical outcome (viral load), i.e., the lower the adherence to antiretroviral therapy, the higher the viral load found. The WebAd-Q considers only the patient dimension within the five determinants associated with adherence to long-term treatment established by the World Health Organization¹³13. World Health Organization. Diet, nutrition, and the prevention of chronic diseases: report of a joint WHO/FAO expert consultation. Geneva (CH): WHO; 2003 [cited 2021 Jul 16]. (WHO Technical Report Series; Nº 916). Available from: http://apps.who.int/iris/bitstream/handle/10665/42665/WHO_TRS_916.pdf;jsessionid=2DC8A9F3975036E927DA4EAB3FDD4ED7?sequence=1
http://apps.who.int/iris/bitstream/handl... . It assesses whether all medications were taken at the prescribed times and doses during the last week, with good reliability.

The WebAd-Q was used to assess adherence to ART in a non-representative sample survey conducted in the five regions of Brazil⁴²42. Santos MA, Guimarães MDC, Santa Helena ET, Basso CR, Vale FC, Carvalho WMES, et al. Monitoring self-reported adherence to antiretroviral therapy in public HIV care facilities in Brazil: a national cross-sectional study. Medicine. 2018;97(1 Suppl):S38-45. https://doi.org/10.1097/MD.0000000000009015
https://doi.org/10.1097/MD.0000000000009... . A high proportion of non-adherence to antiretroviral therapy was observed. According to the authors, the WebAd-Q is a tool that can be quickly applied, favoring the routine care to people living with HIV, allowing the identification of gaps in the provision of counseling and guidance on therapy, and also allows the development of innovative strategies to prevent non-adherence.

We highlight the following strengths of the three studies included in this scoping review: (1) the measurement instruments involve simplified and objective questions, contributing to their understanding and facilitating the response; (2) adequate values of the psychometric analysis validation process, thus ensuring valid and accurate instruments to assess the adherence of people living with HIV to antiretroviral therapy in Brazil; and (3) situational diagnostic capacity regarding therapeutic adherence. The instruments enable continuous monitoring, contributing to decision-making together with the patient towards their effective adherence to the ART.

However, the instruments also present some weaknesses. As for the CEAT-HIV²⁸28. Remor E, Milner-Moskovics J, Preussler G. Adaptação brasileira do “Cuestionario para la Evaluación de la Adhesión al Tratamiento Antiretroviral”. Rev Saude Publica. 2007;41(5):685-94. https://doi.org/10.1590/S0034-89102006005000043
https://doi.org/10.1590/S0034-8910200600... , sample size bias is its weak point. In this study, we could identify whether the sample size considered is ideal for studies involving instrument validation. It is worth remembering that the established cutoff point should be used with caution as the questionnaire is a self-administered instrument. The proposed validation and reproducibility of a self-efficacy scale for adherence of children and adolescents to the ART²⁹29. Costa LS, Latorre MRDO, Silva MH, Bertolini DV, Machado DM, Pimentel SR, et al. Validity and reliability of a self-efficacy expectancy scale for adherence to antiretroviral therapy for parents and carers of children and adolescents with HIV/AIDS. J Pediatr (Rio J). 2008;84(1):41-6. https://doi.org/10.2223/JPED.1751
https://doi.org/10.2223/JPED.1751... considered the responses of parents or caregivers rather than the perception of the target study population. This is so far the only instrument validated in Brazil that assesses adherence of children and adolescents to antiretroviral therapy.

The WebAd-Q³⁰30. Vale FC, Santa-Helena ET, Santos MA, Carvalho WMES, Menezes PR, Basso CR, et al. Desenvolvimento e validação do Questionário WebAd-Q para monitorar adesão à terapia do HIV. Rev Saude Publica. 2018;52:62. https://doi.org/10.11606/S1518-8787.2018052000337
https://doi.org/10.11606/S1518-8787.2018... instrument, unlike the other two studies included, considers only the patient-related determinant associated with adherence. Finally, as these are self-administered instruments, they are subject to the Hawthorne’s effect, i.e., respondents may be influenced in their answers when considering the presence and/or possible “judgment” of the professional who will receive the answers regarding adherence to the ART. We highlight the fact that the studies were validated in people living with HIV in Brazil; however, the scope in the use of the questionnaires should be understood with caution, as instruments were validated considering the reality of a specific region or service in the country. In this sense, one should verify the feasibility of using the instruments in the scope of a national study, seeking to reflect the heterogeneity of both people under treatment in the country, and the traits of the services that assist them.

Even with the intrinsic limitations of this review, especially considering the large volume of studies that used different instruments to measure adherence of patients to antiretroviral therapy in Brazil, only three studies were validated from psychometric analyses for the national context. Thus, the quantity and methodological specificities of each study identified make it impossible to compare the realities and contexts in which instruments were validated. However, it reinforces the need for additional investments; that is, being (re)used in different settings. Furthermore, we believe that the results of this paper depict the scientific literature in this time and space, considering the consultation of the six main databases for the compilation of instruments to measure adherence to ART, validated in Brazil. For safety purposes, searches on the Preprints and gray literature servers were included.

We emphasize that this scoping review could gather and present, in a simplified and accessible way, the instruments validated in Brazil that assess adherence of people living with HIV to antiretroviral therapy. The studies included in this review enable the assessment of adherence of children, adolescents and adults living with HIV. In this sense, health professionals working in the care of these people can frequently identify and monitor their adherence and propose specific strategies for each person, in order to consolidate good adherence and intervene in the treatment of those not engaged in therapy. In summary, the use of validated instruments to measure adherence to long-term treatment can support public measures, as well as determine the influence or not of the determinants that act negatively on adherence, as established by the World Health Organization.

CONCLUSION

The instruments to assess adherence to antiretroviral therapy for people living with HIV included in this scoping review are strategies validated for the Brazilian context. However, their (re)use in different settings and contexts of the nation should be expanded. The use of these instruments by health professionals can improve the understanding of factors that act negatively or positively on adherence to ART, and the proposition of strategies intended to consolidate good adherence and intervene in the treatment of patients with low therapeutic engagement. We emphasize the need for further studies to develop an instrument for national use, which has its validation process in more cities and regions of Brazil.

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