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Keywords:

  • antiretroviral therapy;
  • patient education;
  • patient counseling;
  • treatment readiness;
  • adherence;
  • HIV;
  • South Africa
  • thérapie antirétrovirale;
  • éducation du patient;
  • préparation du patient;
  • apprêtement au traitement;
  • adhésion;
  • VIH;
  • Afrique du Sud
  • terapia antirretroviral;
  • educación de pacientes;
  • preparación de pacientes;
  • disponibilidad del tratamiento;
  • adherencia;
  • VIH;
  • Sudáfrica

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

Objective  To investigate patient education and counseling activities prior to the initiation of antiretroviral therapy (ART) at public sector services across Cape Town, South Africa.

Methods  Key informant interviews and programme reviews were conducted with government bodies and non-governmental organisations involved in patient preparation activities.

Results  All 11 organisations in Cape Town involved in training and managing personnel to prepare patients for ART during 2010 participated. Each organisation reported a different approach to patient preparation within public sector clinics and in each aspect of patient preparation activities. The number of patient education sessions ranged from 3 to 7, and the delays to ART initiation introduced by patient preparation ranged from 3 to 6 weeks. Different patient education materials (pamphlets, posters and flipcharts) were used by various programmes, and all programmes reported that shortages in materials meant that patient preparation often took place without any educational materials. Each programme also reported attention to mental illness and alcohol/substance use disorders, but none employed formal screening tools consistently, and the handling of patients with potential mental health- or substance-related problems varied.

Conclusion  Approaches to prepare patients before ART initiation are wide ranging in one part of South Africa. Their relative value requires investigation, as there is little evidence for the impact of varying approaches. Moreover, the risks associated with delayed ART initiation may outweigh any benefits of patient education before the start of treatment.

Objectif:  Investiguer les activités préparatoires des patients avant l’initiation de la thérapie antirétrovirale (ART) dans les services du secteur public à Cape Town, en Afrique du Sud.

Méthodes:  Des entretiens avec les informateurs clés et l’analyse des programmes ont été menés avec des organismes gouvernementaux et des organisations non gouvernementales impliqués dans les activités de préparation des patients.

Résultats:  Toutes les 11 organisations dans la ville de Cape Town, impliquées dans la formation et la gestion du personnel dans la préparation des patients pour l’ART au cours de 2010, ont participéà l’étude. Chaque organisation a rapporté une approche différente dans la préparation du patient au sein des cliniques du secteur public et dans chaque aspect des activités de préparation des patients. Le nombre de séances d’éducation des patients variait de 3 à 7 et les retards impliqués à l’initiation de l’ART par la préparation du patient variaient de 3 à 6 semaines. Différents outils pour l’éducation du patient (brochures, affiches et tableaux) ont été utilisés par les divers programmes et tous les programmes ont rapporté que les pénuries en outils entrainaient souvent la préparation du patient sans aucun matériel pédagogique. Chaque programme a également attiré l’attention sur les maladies mentales et les troubles liés à l’usage d’alcool/drogues, mais aucun n’a utilisé des outils de dépistage officiels de manière cohérente et la prise en charge des patients atteints de potentiels troubles mentaux ou des problèmes liés à des drogues variait.

Conclusion:  Les approches visant à préparer les patients avant l’initiation de l’ART sont de grande envergure dans cette partie de l’Afrique du Sud. Leur valeur relative nécessite une investigation car il y a peu de données sur l’impact des différentes approches. De plus, les risques associés au retard à l’initiation de l’ART peuvent l’emporter sur les avantages de l’éducation du patient avant le début du traitement.

Objetivo:  Investigar sobre las actividades realizadas para preparar a los pacientes para el inicio de la terapia antirretroviral (TAR), en servicios del sector público, a lo largo de Ciudad del Cabo, Sudáfrica.

Métodos:  Se realizaron entrevistas con informadores clave y la revisión de los programas de centros gubernamentales y organizaciones no gubernamentales, involucradas en actividades de preparación de los pacientes.

Resultados:  Participaron en el estudio todas las 11 organizaciones de Ciudad del Cabo involucradas durante el 2010 en el entrenamiento y el manejo del personal sanitario responsable de la preparación de pacientes para el TAR. Dentro del sector público, cada organización reportó tener un enfoque diferente sobre la preparación de los pacientes en general, así como en cada aspecto de las actividades de preparación. El número de sesiones de educación del paciente estaba entre 3 y 7, y los retrasos para iniciar el TAR debidos a la preparación del paciente estaban entre las 3 y las 6 semanas. Varios programas utilizaban diferentes materiales educativos (panfletos, posters y rotafolio), y todos los programas reportaron que por la escasez de los materiales necesarios para la preparación de los pacientes a menudo tenían que realizar la preparación sin materiales educativos. Cada programa también reportó prestar atención a las enfermedades mentales y a desórdenes por consumo de alcohol/otras sustancias, pero ninguno utilizaba herramientas de detección de forma consistente, y variaba el manejo de los pacientes con posibles problemas mentales o de consumo de sustancias.

Conclusión:  En esta región de Sudáfrica existe un amplio rango de formas para preparar a los pacientes antes del inicio del TAR. Su valor relativo debería investigarse, puesto que hay poca evidencia sobre el impacto de cada una de ellas. Más aún, los riesgos asociados a un retraso en el inicio del TAR podría sobreestimar los beneficios de pacientes con educación antes de comenzar el tratamiento.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

Patient preparation before antiretroviral therapy (ART) initiation is considered a key determinant of treatment adherence, and ‘treatment readiness’ is described in international guidelines as a requirement before ART can be started (Thompson et al. 2010). In South Africa, more than 1.5 million individuals have been started on ART, making it the largest public sector ART programme in Africa, with unprecedented resources invested in this programme (Johnson 2012). ART programmes across South Africa emphasise intensive patient education prior to ART initiation (Gebrekristos et al. 2005). As elsewhere in sub-Saharan Africa, patient preparation efforts in South Africa take the form of patient education delivered by counsellors prior to ART initiation. This approach is commonly thought to contribute to high levels of treatment adherence (Kwaan et al. 2010), and intensive patient preparation before ART initiation has become a widespread convention within South African ART services.

In Cape Town, South Africa, ART services have been available at public sector facilities since 2004. By the end of 2010, approximately 85 000 adults had started therapy. Many ART services have developed individually over time in this setting, with a range of approaches to patient preparation and support (Pienaar et al. 2006). However, there is little understanding of the different approaches to patient preparation and support that exist in Cape Town, and in turn whether any such variation may influence programme performance or patient outcomes. We investigated the different approaches to patient preparation to achieve treatment readiness in public sector ART services across Cape Town. Specifically, this study documented the training of counsellors, who implement patient preparation activities, and the treatment readiness requirements in public sector ART services.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

At the end of 2010, we surveyed government programmes and all 11 non-governmental organisations involved in patient preparation for ART in the greater Cape Town area. Key informant interviews with Department of Health officials focused on the training of ART counsellors and on the history of ART patient preparation. Non-governmental organisations were identified from a list of institutions that (i) train counsellors to prepare patients for ART initiation and/or (ii) deliver patient preparation services. The list was augmented using snowball sampling to ensure that all relevant institutions were included. Telephonic and in-person interviews were conducted with the counsellor training manager in each organisation using a simple question guide to capture key constructs of interest including patient preparation content, structure and requirements. In total, interviews were conducted with 11 non-governmental organisations and 7 members of the provincial and municipal Departments of Health.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

All 11 organisations that provide pre-ART patient education in Cape Town participated in the survey (Table 1). All organisations employed lay health workers, most commonly referred to as counsellors or patient advocates. These counsellors conducted almost all patient preparation in the clinics and were all trained by a central training centre within the provincial Department of Health. Most organisations said that nurses and/or doctors were also involved in patient preparation, although clinicians’ roles in patient preparation were not structured.

Table 1.   Key features of patient preparation before ART initiation in Cape Town, South Africa, by patient programme
ProgrammeSessions before ART initiationType of sessionTypical delay from first visit to ART initiationPatient education materialsUse of treatment partnersTraining for treatment partnersApproach to alcohol/substance useApproach to depression
A31-on-1 counselling6 weeksCustom-made patient materialsRecommendedPartners attend sessions 2 and 3No delay in ART initiation; patient referred to separate servicesPatient referred to care
B21-on-1 counselling2–3 weeksDepartment of Health and national NGO materialsRecommendedPartners attend session 2 onlyNot able to start ART; referred to separate services Patient able to start, but referred to care
C41-on-1 counselling3 weeksDepartment of Health and national NGO materials with custom-made materialsRecommendedSeparate training for partnersNot able to start ART; referred to separate services Patient able to start, but referred to care
D31-on-1 counselling4 weeksDepartment of Health and national NGO materialsRequiredPartners attend sessions 2 and 3Not able to start ART; referred to separate services Patient able to start, but referred to care
E31-on-1 counselling2–4 weeksDepartment of Health and national NGO materialsRecommendedPartners attend session 3No delay in ART initiation; on-site counsellingPatient referred to care
F31-on-1 counselling3 weeksCustom-made and international NGO materialsRecommendedPartner may come if patient prefersNo delay in ART initiation; patient referred to separate servicesPatient able to start, counselled on site
G31-on-1 counselling2–4 weeksDepartment of Health materialsRecommendedPartners attend session 3No delay in ART initiation; on-site counsellingPatient referred; initiation determined by doctor
H7Group sessions4–6 weeksDepartment of Health and national NGO materialsRecommendedPartners attend session 1No delay in ART initiation; on-site counsellingPatient referred to social worker who determines when ready to initiate
I31-on-1 counselling2–4 weeksDepartment of Health and national NGO materialsRecommendedPartners attend sessions 2 and 3No delay in ART initiation; on-site counsellingPatient initiation determined by doctor
J41-on-1 counselling & group sessions5 weeksCustom-made materials with Department of Health and national NGO materialsRecommendedPartners attend all sessionsNo delay in ART initiation; on-site counsellingPatient referred to care
K31-on-1 counselling3 weeksDepartment of Health and national NGO materialsRequiredPartners attend session 3 and initiationNo delay in ART initiation; patient referred to separate servicesPatient able to start

Each organisation reported a different structured programme of patient education within the clinics, typically comprised of 3 sessions before ART initiation (maximum, 7) (Table 1). Completion of all sessions was generally required prior to patient initiation onto ART. These sessions were distributed over a 3- to 6-week period, although most organisations reported a ‘fast track’ approach to patient preparation for urgent cases. One-to-one counselling was employed by most programmes, although some organisations supplemented these with group sessions. Counsellors worked with patients on a range of HIV-related subjects to ensure patient ART adherence: the basics of HIV/AIDS including its effect on the human body, ARVs and side effects, and positive living and condom use. Four of the 11 programmes stated that they required visits to patients’ homes before or soon after ART commencement.

A variety of printed materials were used to assist in patient education, with many programmes reporting use of posters, pamphlets and wall charts. Patient education materials were either generated by the Department of Health, international, national and local NGOs, and the specific content of materials varied. Most NGOs reported that counsellors also made their own patient preparation posters at times. However, almost all organisations noted that the availability of patient education materials was irregular and that patients were frequently counselled without any formal materials.

ART adherence facilitators and barriers were managed differently across Cape Town. ‘Treatment partners’ were mandatory in two programmes and strongly recommended by all others, with variable training required of the ‘treatment partner’. This training generally included attending counselling sessions with the ART-eligible patient, but one organisation conducted monthly treatment partner training sessions. Home visits by community health workers or similar personnel were mandatory in some but not all organisations.

All programmes reported a specific approach to managing patients with mental health concerns (usually focusing on depression) or alcohol/substance use disorders; but none reported that they used formal screening tools to identify these individuals. When individuals with possible mental health concerns were identified, the management plans varied from referral to local primary mental health services (e.g. the psychologist or mental health nurse working at a nearby clinic) without any change to the patient ART preparation routine, to requiring mental health or substance abuse to be resolved before ART initiation. Generally, these concerns required documented evaluation with a management plan, but not resolution, before HIV treatment could start (Table 1).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

This simple review demonstrates considerable diversity in the current approaches to prepare patients to achieve ‘treatment readiness’ before ART initiation in South Africa. Patient education, the use of materials and treatment partners, and patient requirements are managed differently by each of the organisations reviewed here. The lack of standardised approaches means that individuals’ experiences of patient education programmes within public sector ART services in Cape Town vary considerably depending on the service they attend.

These results should be generalised with caution. The healthcare system in the Western Cape Province is relatively robust compared with other parts of South Africa, and the South African public sector health service is among the best resourced on the continent. Clearly, additional research is required in other settings to understand the different approaches to patient preparation before ART initiation that have evolved in various settings.

Delays to ART initiation may be associated with considerable morbidity and mortality in individuals with tuberculosis, advanced HIV disease or pregnant women (Lawn et al. 2008; Abdool Karim et al. 2010; Stinson et al. 2010). Across Cape Town, most eligible patients are delayed for several weeks before ART initiation while patient education takes place. While patient education in an attempt to enhance treatment readiness could possibly contribute to improved treatment outcomes, the risks and benefits of delaying ART for patient education require careful consideration. Alternative patient education strategies that minimise delays to treatment deserve particular attention in circumstances where rapid initiation of ART is critical to achieving optimal outcomes, such as ART initiation in pregnancy for preventing the mother-to-child transmission of HIV while promoting maternal health (Myer 2011).

Although ART services in this setting are delivered through public sector facilities, most programmes interviewed reported drawing on different sets of patient education materials. While many services reported using materials from the National Department of Health, these were not available on a regular basis. Other materials were drawn from a number of different sources, including materials from international or local NGOs, with widely varying content and structure. Other organisations reported that they often had no resources available for use with patients when their supplies were out of stock. This situation further inhibits standardised training of patients to ensure treatment adherence. Providing standardised patient education materials (posters, charts, pamphlets) to all ART services would be a simple and cost-effective way to ensure a minimum set of health education and health promotion messages that all patients commencing ART are exposed to. Indeed, there are efforts underway to standardise patient education materials in the Western Cape Province through a flip chart developed by one of the first ART services in Cape Town.

The absence of a widely accepted approach to identifying and addressing substance use and mental disorders represents another missed opportunity in patient care. Both alcohol abuse and depression are prevalent among HIV-infected individuals and in South Africa specifically, and both are recognised as potential causes of non-adherence to ART (Michel et al. 2010; Gonzalez et al. 2011). Yet practical screening tools to identify individuals with these disorders in the context of chronic care services such as ART, and an effective approach to manage the patients identified as having substance use and mental disorders, are clearly not standardised. There have been important developments in this area, including attention to the potential role of cognitive–behavioural therapy for HIV-infected individuals with depression (Daughters et al. 2010), an important area for intervention development and application.

The diversity in counselling services for ART preparation across Cape Town raises questions around the need to harmonise patient training programmes delivered by public sector services. Preliminary efforts at this, in the form of a single flip chart-based counselling aid, are underway, as are innovative approaches to structure patient–counsellor interactions with multimedia interventions (Remien et al. 2010). Standardising patient ART preparation is an important challenge, given the diverse origins of ART programmes (with many services originating in international donor aid that predated the public sector ART roll-out). In addition, there may be a window of opportunity in South Africa in the light of shrinking reliance on international donors to fund ART services (allowing the national and provincial Departments of Health greater control over ART services, and in turn the opportunity for coordination across services) along with efforts to implement a universal community health worker model for the country (Schneider et al. 2008).

There may be important advantages to standardising ART preparation approaches across services. From a policy and programmatic perspective, a single model of patient preparation would facilitate health services planning and budgeting of staff for counsellors to support ART services. There is increasing attention to the transferring of patients between ART services (e.g. because of patients’ geographic relocation); from a service- and patient-level perspective, it would be valuable to ensure that patients transferred between clinics have received some uniform HIV/AIDS and ART education. But while coordination of approaches for patient preparation for ART across services in given location (here, Cape Town) seems logical, it is also important to note that there may not be a single ‘best’ approach that can be applied universally. Standardised schemes for patient preparation before ART initiation need to incorporate flexibility to adapt to specific contexts, such as perceived level of stigma and social support, previous disclosure of HIV status and/or clinical condition at the time of initiation. For example, home visits are unlikely to be necessary for all patients, and patients with mental health concerns will have unique support needs. Thus, the optimal strategy for patient preparation may seek to balance a core of standard content (and possibly standard materials for patient preparation) with some ability to adapt to patients’ circumstances.

Of note, there is little evidence to support the use of any of the counselling programmes and materials described here. Hence, there is little understanding of the effectiveness or acceptability of different counselling models in improving adherence and retention in care (Nordqvist et al. 2006). More generally, while many researchers, clinicians and programme personnel would probably agree that patient preparation before ART initiation is an important component of effective ART programmes, the evidence base for different forms of pre-treatment preparation improving treatment outcomes is surprisingly sparse (Grimes & Grimes 2010). With growing concern around the ability of ART programmes to retain very large numbers of patients over time, both in South Africa and more generally (Cornell et al. 2010), this highlights a potential gap in urgent need of additional investigation.

In summary, these data demonstrate heterogeneity in the ART preparation models used across Cape Town, South Africa. This diversity has potentially important implications for missed opportunities for appropriate patient preparation and, ultimately, patient outcomes over time. Developing a consistent, evidence-based ART preparation programme remains an important need in the ongoing efforts to provide optimal ART services.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References
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