Guidelines for the transfer of people living with HIV attending primary healthcare facilities in South Africa: a scoping review

Abstract

People living with HIV may move between health facilities: this is called ‘transfer’, and includes up- and down-referral based on clinical condition and lateral transfer (e.g. between primary healthcare [PHC] facilities for reasons such as geographic mobility or stigma). Transfers involving PHC facilities occur frequently and are associated with viraemia and disengagement. We reviewed the South African National Department of Health (NDOH) and Southern African HIV Clinicians Society websites and contacted NDOH officials to identify national guidelines applicable to HIV care in South Africa for recommendations on transfers involving PHC facilities. In total, 21/24 (88%) documents mentioned transfer, using the terms ‘referral’, ‘linkage’, ‘transfer’, ‘transition’ and ‘handover’. Guidelines defined ‘linkage to care’ as connecting individuals to care after HIV testing, but other terms were not well defined. Documents emphasised transfers between different levels of the health system, and transfers between PHC facilities received limited attention. The transfer process was delineated for linkage to care, up- and down-referrals, but not for transfers between PHC facilities. Clinical management of patients transferring between PHC facilities and tracing of patients who requested transfers and missed their visits were not specified. Overall, transfers between PHC facilities were not well addressed and require attention to improve HIV treatment outcomes.

Background

Globally, approximately 29.8 million of the 39 million people living with HIV (PLHIV) were on antiretroviral therapy (ART) in 2022,¹ including 5.7 million people in South Africa.^2,3 Provision of long-term care to increasing numbers of people on ART is challenging, particularly in low- and middle-income countries (LMICs), where health systems have developed to provide acute episodic care.⁴

To maintain long-term care, PLHIV may require access to care at multiple health facilities over time; this would require movement between facilities, which we will refer to as ‘transfers’. Transfers can interrupt the continuum of care.⁵ They may be health system-initiated: based on clinical condition, patients may be transferred from higher to lower levels of care (down-referral; e.g. from hospitals to primary healthcare [PHC] facilities), or from lower to higher levels of care (up-referral; e.g. from PHC facilities to hospitals for inpatient or outpatient care). Patients who are tested for a condition may require referral for prevention or treatment, which is sometimes referred to as ‘linkage to care’.⁶ In addition to health system-initiated transfers, transfers may be patient-initiated, for example, because of geographical mobility, which is common in sub-Saharan Africa including South Africa,⁷ stigma⁵ or seeking better clinic services.^8,9 Patient-initiated transfers may be lateral, that is, between facilities at the same level of care (e.g. between PHC facilities). With ongoing integration of HIV care into PHC,⁴ the importance of transfers involving PHC facilities is increasingly recognised.

Transfers of adults on ART involving PHC facilities have been shown to occur frequently and in multiple settings,^10–16 and individuals who transfer may transfer multiple times.¹⁷ Further, transfers involving PHC facilities have been associated with viraemia,⁵ disengagement from care¹⁸ and clinical deterioration.¹⁹ Up- and down-referrals have received some attention from researchers.^20–23 Regarding lateral transfers between PHC facilities, there is evidence that these occur frequently; among 2797 PLHIV on ART in Cape Town, South Africa, who were followed up for a median of 31.6 mo, there were a total of 14 849 transfers, of which 33% were between PHC facilities. Despite this, little attention has been paid to lateral transfers between PHC facilities.²⁴

Transfers are potentially complicated, involving multiple facilities and actors, and have been described by PLHIV in South Africa as confusing and logistically complicated.²⁵ Transfers can be either official or silent. Official transfers occur when patients inform their original facility of the transfer, while silent transfers (also called unofficial or self-transfers) occur when patients transfer without alerting the original facility.¹⁶ Silent transfers may affect programme monitoring and reporting; patients who silently transfer may be misclassified as lost to follow-up (LTFU) at the original facility while attending another facility, leading to an overestimation of LTFU and an underestimation of retention.^11,16 In addition, patients who silently transfer may be started on ART as new patients at the facilities to which they transfer, leading to an overestimation of the numbers ever started on ART.^11,26 Despite these complexities, a lack of clear guidelines on the management of transfers was described for pregnant women living with HIV who may have to transfer between antenatal, postnatal and HIV care,²⁷ and it is unclear how transfers in non-pregnant adults living with HIV are addressed in policies and guidelines. We reviewed national guidelines to describe recommendations regarding the transfer of PLHIV in South Africa, focusing on transfers involving PHC facilities, including lateral transfers.

Materials and methods

We conducted a scoping review to provide an overview of current guidelines. The review follows the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) and was conducted according to the five stages described by Arskey and O'Malley.^28,29

The research question was formulated as follows: What are the national policies and guidelines regarding the transfer between healthcare facilities of adults living with HIV attending PHC?

Search strategy

We reviewed the South African National Department of Health (NDOH) website and contacted officials working at the Department to identify relevant documents. We also reviewed the Southern African HIV Clinicians Society (SAHCS) website, which catalogues and provides access to NDOH guidelines related to HIV care. In addition, a literature search was conducted in PubMed using terms for transfers identified in previous reviews on patient transfer (Supplementary File 1).^27,30 The search covered existing publications in English, had no time restrictions and was last conducted on 6 March 2023.

Screening and eligibility

Titles and abstracts were screened by one researcher (JO), who identified potentially relevant records. Full texts were obtained and read, and eligibility criteria applied. Policies, circulars, strategic plans, guidelines, standard operating procedures (SOPs), manuals, clinical decision-making tools and job aids that were authored and/or published by the NDOH were eligible for inclusion. Duplicates, provincial guidelines, frameworks, media releases, forms, patient education materials, draft guidelines, guidelines applicable to paediatric and adolescent populations only and documents published in languages other than English were excluded. Among potentially eligible documents, those that addressed any aspect of HIV testing, management or prevention were included; this included documents that also addressed management of other conditions. However, documents focused solely on antiretroviral drugs including drug interactions or changes in ART regimens were excluded. Documents focused on health facility or health systems management that were applicable to HIV testing or management of PLHIV were included. When a guideline had been updated over time, the most recent version was included.

Charting the data

Included documents were re-read iteratively and information was captured onto a data-charting form including how the document was accessed; year of publication; whether it was an update of a previous document/replaced a previous document versus a new document; terms used to refer to transfers and their definitions; and recommendations regarding transfer processes. Information regarding transfers from PHC facilities to hospitals, hospitals to PHC facilities and between PHC facilities was extracted, and data related to transfers for HIV-specific care and for other care among PLHIV were included.

Analysis

Characteristics of the included documents were captured and tabulated in Microsoft Excel (Microsoft Corporation, Redmond, Washington, United States) and expressed as frequencies and percentages, including terms used to refer to transfers and recommendations regarding transfer processes, which were categorised as related to the macro-level (policy level), meso-level (organisation and community level) or micro-level (patient interaction level) of the health system.

Results

Eligible documents were identified on the NDOH (n=15) and SAHCS websites (n=8; Figure 1). A PubMed search identified 468 records; none were included as none were authored or published by the NDOH. An additional document suggested by an NDOH official was eligible for inclusion, making up 24 documents included in the final review.

Figure 1.

Eligibility of documents.

Of the 24 included documents, six (25%) addressed HIV testing, management and/or prevention,^31–36 two (8%) addressed adherence among people with HIV, TB and/or non-communicable diseases (NCDs)^37,38 and three (13%) addressed clinical management of common conditions including HIV (Supplementary Table S1).^39–41 Nine (38%) documents provided guidance regarding health facility or health systems management that was applicable to HIV testing or management;^42–50 of these, three formed part of the Ideal Health Facility programme, which aims to improve the quality of care at PHC facilities, and one, the national referral policy, was the only document that focused solely on transfers between health facilities.^43–45 Four (17%) documents addressed management of specific patient populations, including the management of HIV.^51–54 Of the included documents, 12 (50%) were updates of previous documents or replaced previous documents.^{31,34,36,38–41,43,44,46,48,51}

Terms and definitions

Overall, 21/24 (88%) documents mentioned either refer/referral, link/linkage, transfer, handover and/or transition when discussing transfers of PLHIV,^{31,33–44,47–54} with some using multiple terms. Of the 21 documents that did mention at least one of the terms related to transfers, 20 (95%) mentioned refer/referral,^{31,34–41,43–45,47–54} three (14%) mentioned active referral,^34,36,38 15 (71%) mentioned links/linkages,^{33–39,41,47–49,51–54} 10 (48%) mentioned transfer,^{31,34,37,38,43–45,49,51,54} three (14%) mentioned handover^43,44,49 and one (5%) mentioned transition.⁵¹ While paediatric and adolescent populations were not included in the review, we note that two documents used ‘transition’ to denote the transfer of adolescents from paediatric to adult HIV services.^48,52 Further, some of the above terms were used outside of the context of patient transfer (e.g. transition between regimens), but these uses were not tabulated. Four documents provided definitions of the terms used: ‘referral’ was defined in one document,⁴⁹ ‘active referral’ in two,^34,36 ‘transfer’ in one⁴⁹ and ‘linkage’ in three.^34,36,37 Neither ‘transition’ nor ‘handover’ was defined in any of the documents.

The national referral policy defined ‘transfer’ as the management process involved in moving a patient between facilities (Box 1).⁴⁹ The same document defined ‘referral’ as ‘processes of professionals and institutions communicating and working together to protect, promote and restore the health of an individual’, with upward, downward and lateral referrals included as types of referrals.⁴⁹ ‘Lateral referral’ was defined as referral between hospitals for the same specialty, but movement between PHC facilities was not mentioned.⁴⁹ The Ideal Clinic and Community Health Centre (CHC) manuals did not define referral or transfer, but use of ‘referral’ related to ensuring access to a full range of health professionals and ‘transfer’ to movement of patients between facilities and emergency medical services.^43,44 Transfer thus appeared to denote the process of patient movement, while referral was used in terms of facilitating access to the care required to ensure patient health, but the distinction was not clear and they were sometimes used interchangeably.^39,45 Active referral was more clearly defined in two guidelines as initiation of the referral by the healthcare worker (HCW), including scheduling of the appointment,³⁶ provision of a referral letter³⁴ and/or accompanying the patient to the appointment.³⁶

Box 1. Definitions of terms.

Transfer

1. Referral policy for South African health services and referral implementation guidelines⁴⁹:

   • - ‘A management process used to move a client from one facility to another.’

   • -In the same document, transfer is also categorised as a type of referral and is defined as: ‘The clinical responsibility for patient management is transferred to the most appropriate practitioner as warranted by the patient's condition.’

Link/linkage

1. National Consolidated Guidelines for the Management of HIV in Adults, Adolescents, Children and Infants and Prevention of mother-to-child transmission of HIV³⁴ and National HIV testing Services: Policy³⁶:

   Process of actions and activities that support people testing for HIV and people diagnosed with HIV to engage with prevention, treatment and care as appropriate for their HIV status.

   • - For people living with HIV, it is the period from HIV diagnosis to enrolment in HIV care and treatment.

   • - For people testing HIV-negative, it is the period from HIV testing to enrolment in preventative health services.

2. Adherence guidelines: Education on illness and treatment³⁷:

   • Process of linking or connecting a person with a disease to appropriate prevention, treatment, care and support services.

Refer/referral

1. National Consolidated Guidelines for the Management of HIV in Adults, Adolescents, Children and Infants and Prevention of mother-to-child transmission of HIV³⁴:

   • Active referral: a referral in which the official referring the patient makes an appointment for the patient and provides a referral letter/form.

2. National HIV Testing Services: Policy³⁶:

   • Active referral: a referral where the person performing an HIV test makes an appointment for the client or accompanies the client to an appointment including an appointment for co-located services and enrolment into HIV clinic care.

3. Referral policy for South African health services and referral implementation guidelines⁴⁹:

   • - Referral: processes of professionals and institutions communicating and working together to protect, promote and restore the health of an individual. This movement of a patient to another level of care could be internal, upward, downward or lateral for continuity of care.

   • - Lateral referral: referral between hospitals for the same specialty.

Transition and handover

Not defined.

All three definitions of ‘linkage’ involved connecting individuals to care after screening or testing for a disease.^34,36,37 Two guidelines that were specific to HIV management defined linkage as connecting those who tested HIV-positive to HIV care and those who tested HIV-negative to preventative care.^34,36 One guideline that applied to HIV, TB and NCDs defined linkage more generically as connecting someone diagnosed with a disease to prevention, treatment and support services.³⁷ However, in some documents, other terms were used for this concept, including ‘referral’.³⁵ ‘Transition’ was used to indicate movement between types of service delivery (e.g. transition from postnatal to standard adherence clubs),⁵¹ while ‘handover’ referred to the process of moving patients between health facility and transport staff,^43,44,49 and to handover of patients between staff at shift changes.⁴⁴

Recommendations

Recommendations regarding transfers were found in 21 documents and were grouped into macro-, meso- and micro-level recommendations. When making specific recommendations regarding transfers, few of the included documents referenced other documents. Overall, three documents mentioned the national referral policy when discussing transfer processes.^43,44,50

Macro-level

The first national referral policy was published in 2020 after the COVID-19 pandemic exposed difficulties with referrals between levels of the health system.⁴⁹ It applied to national, provincial and district levels and aimed to provide HCWs and managers with an approach to referral of patients to the appropriate health service, based on clinical condition, while ensuring timely access to comprehensive healthcare and maintaining continuity of care. Recommendations were made for referral processes in general, but processes for lateral transfers between PHC facilities were not mentioned.

Meso-level

Referral pathways

Five documents promulgated clear referral pathways to ensure access to higher or lower levels of care based on clinical condition.^{43,44,49,50,53} District-level SOPs describing the referral network including names and contact details of facilities providing specific services should be available, and a list of referral pathways should be displayed. Referral pathways between PHC facilities and the availability of contact information for PHC facilities to which patients may request a transfer were not mentioned.

Communication between facilities

The national referral policy and the Ideal Clinic and CHC documents stated the importance of completing referral forms for patients who are being referred.^43,44,49 Other documents emphasised the use of referral forms for linkage to care among people diagnosed with HIV,³⁴ for people living with HIV, TB and NCDs who are travelling or relocating^37,38 and for women living with HIV who are postdelivery and will receive ART elsewhere.^34,51 Three documents stated that referral forms should be available in all consultation rooms.^43–45

The national referral policy also recommended scheduling of appointments with receiving facilities.⁴⁹ Four additional documents recommended scheduling of appointments in specific situations: three applied to linkage to care among PLHIV,^34,36,48 and one applied to people with HIV, TB or NCDs being referred back to the facility after missed visits and to PLHIV being referred to community structures for support.³⁸ Two documents suggested that, where feasible, patients being linked to care after HIV testing should be accompanied to the receiving facility,^34,48 with one specifying that patients be introduced to their new HCWs.³⁴

Regarding digital communication between facilities, the National Digital Health Strategy aimed to establish an integrated platform for health information systems with a unique patient identifier used across facilities to allow linkage of patient-level systems, development of a complete electronic health record, safe sharing of information between facilities and tracking of patient movement.⁴⁶

Recording and reporting

Four documents stated that transfers should be recorded in referral registers; three of these documents applied to all patients^43,44,49 and one to treatment and prevention of HIV among sex workers.⁴⁷ One document stated that logbooks should be used to monitor linkage to care among people tested for HIV and identify missed visits.³⁴

The national referral policy listed indicators to monitor referrals, including hospital referral rate and down-referral rate, but did not include transfers between PHC facilities.⁴⁹ One document stated that pregnant women categorised as LTFU patients who are traced and found to have self-transferred to another facility should have their classification changed to transferred out.³⁴

Training on transfer processes

Only the Ideal Clinic and CHC manuals addressed training on transfers stating that all HCWs should be trained on referral processes.^43,44 The content of training was not specified.

Micro-level

Indications for transfers

The national referral policy stated that up-referral is required when the necessary care cannot be provided at the original facility.⁴⁹ Six documents provided indications for up-referral.^{31,34,39–41,51} Two documents recommended down-referral to support adherence,^40,41 and the referral of stable chronic patients to community-based services was emphasised.^43,44 Regarding lateral transfers, the national referral policy stated that patients who relocate may be referred to a facility at the same level of care, specifying referrals from one tertiary facility to another as an example,⁴⁹ and a document outlining interventions to support linkage to care, adherence and retention in care for people living with HIV, TB and NCDs included travel as a reason to obtain a referral letter.³⁸ A counselling aid for use when counselling patients with HIV, TB and/or NCDs stated that patients should be told that if it becomes difficult to attend their health facility (e.g. due to relocation) then they should inform the facility and request a transfer letter.³⁷ However, none of the full guideline documents included patient choice or request as a reason for transferring.

Clinical management

At least four documents stated that no-one who has run out of treatment should be denied care, regardless of whether they have a transfer letter or not.^31,34,49,51 Clinical management of acutely ill patients being up-referred was described in a few clinical guidelines, including management prior to and during the transfer process.^40,41 However, clinical management of patients who officially transfer or self-transfer between PHC facilities was not specified in any guideline.

Information provided to patients

Post-test counselling to facilitate linkage to care was emphasised.^34–36 The document outlining interventions to support linkage to care, adherence and retention in care among people living with HIV, TB and/or NCDs stated that pre-ART counselling should include that patients should inform the health facility before travelling and receive a referral letter and/or sufficient treatment.³⁸ If unable to do this, patients should attend the nearest health facility as soon as possible after arriving at their destination with evidence of their diagnosis and treatment.³⁸

Patient support

Interventions to support linkage to care post-HIV testing included enhanced post-test counselling, patient accompaniment to ART initiation services, peer support and additional psychosocial support for patients who require tracing before linking to care.^34,36 If at increased risk of not linking to care (e.g. patients who have previously delayed ART initiation), telephonic follow-up and/or home visits were recommended.³⁶ Outside of linkage to care, provision of sufficient treatment was recommended for patients who are travelling,³⁸ but there were minimal other interventions suggested for PLHIV on ART who transfer between PHC facilities.

Tracing and follow-up of transfers

Tracing people who miss appointments would identify those who have self-transferred or are in the process of self-transferring. Seven documents stated that patients who miss appointments should be traced, without mentioning their transfer status: two applied to all patients attending PHC facilities,^43,44 two to patients with HIV, TB or NCDs,^37,38 one to PLHIV³⁴ and two to pregnant women.^34,51

Regarding tracing and the follow-up of patients who transfer, one document recommended tracing PLHIV who did not link to care³⁴ and another recommended tracing down-referred patients who missed their appointment.⁴⁵ Tracing patients on ART who officially transferred between PHC facilities and missed their appointment was not specifically mentioned.

Discussion

Numerous documents discussed the transfer of PLHIV attending PHC facilities, emphasising transfers between levels of the health system, including linkage to care, up-referral and down-referral to community structures. PLHIV may want to transfer between facilities for personal reasons, including lateral transfers between PHC facilities, yet patient request as an indication for transferring received minimal attention and the process of transfer between PHC facilities was not clearly discussed.

The terms referral, transfer and linkage were most frequently used. Most documents did not define the terms used. Overall, transfer related more to the process of patient movement, while referral related to HCWs facilitating access to the required care to ensure patient health, but the distinction was unclear, and terms were sometimes used interchangeably. Linkage was most consistently defined as connecting individuals to care after screening or testing for a disease; however, other terms were sometimes used in this context and linkage was also used in other contexts. Transition and handover were used but not defined. The lack of clear definitions may hamper access to and exchange of research and information regarding transfers.⁵⁵ As further research regarding transfers is conducted, standardisation of terms is vital.

Much of the focus of the reviewed guidelines was on linkage to care post-HIV testing, which is vital to ensure ART initiation in people testing HIV-positive. However, the number of people on ART has increased, and supporting adherence and retention has become increasingly important.^56,57 Most PLHIV in LMICs present to PHC facilities, which are considered best placed to provide the required continuity of care and care coordination,⁴ yet transfers between PHC facilities of PLHIV on ART received minimal attention. Relocation and travel were mentioned as reasons for transferring in different documents^37,38 and a counselling aid stated that patients should be told to inform their facility if it becomes difficult for them to attend that facility and that they should request a transfer letter.³⁸ However, patient request or preference was not mentioned as a reason for transferring in any of the full guideline documents. Clinical management of PLHIV on ART transferring between PHC facilities was not detailed in any one place. Factors such as regimen, previous blood results and disengagement may affect treatment, investigations and follow-up, and guidelines for clinical management based on these factors are required. Importantly, numerous guidelines stated that individuals without transfer letters must not be refused care.^31,34,49,51 Protocols regarding management in the absence of transfer letters are also required.

Disengagement has been documented among PLHIV who officially and silently transfer.^15,58 The national referral policy stated that all patients who miss visits should be traced;⁴⁹ this would identify people who have self-transferred or are in the process of self-transferring to another facility. We did not find mention of follow-up of patients who officially transferred, unless their visit at the receiving facility was missed, and this applied to linkage to care and down-referred patients. Scheduling of appointments and sharing of appointment information with receiving facilities would allow identification of missed appointments by the receiving facility, but these steps were not clearly specified for transfers between PHC facilities. Considering the risk of disengagement, follow-up of patients who officially transfer prior to the occurrence of missed visits should be considered. In addition, PLHIV transferring between PHC facilities who miss their visits should be traced and this process should be clearly outlined. Research to further understand risks in patients who officially vs self-transfer is also required.

Overall, recommendations regarding transfers appear in different documents, applying to different situations and populations. For example, the national referral policy focused on referrals between levels of the healthcare system and did not mention transfers between PHC facilities.⁴⁹ The national referral policy may be a document in which guidelines regarding transfers could be consolidated in one place, including a clear approach to transfers between PHC facilities. It could then serve as a document to which other guidelines refer regarding transfers.

This review focused on one country, South Africa, with specific mobility patterns and a health system that may differ from other countries. However, these findings may be relevant to other LMICs with high levels of mobility.²⁷ The extent to which these guidelines are implemented is unclear and there may be differences in implementation at a local level. Current transfer practices thus require investigation in different settings, including qualitative research among HCWs and patients to understand experiences of transfers and barriers to successful transfers. Considering the prevalence of other chronic conditions in LMICs, transfer guidelines should be examined for other chronic conditions.

Maintaining continuity and care coordination during the transfer process is critical for ensuring good health in PLHIV. Transfers between PHC facilities occur frequently and are associated with poor outcomes, but are not well addressed in guidelines. The national referral policy focuses on referrals between different levels of the healthcare system, but does not address transfers between PHC facilities. The development of a single document providing clear guidance regarding different types of transfers including transfers between PHC facilities should be considered.

Authors’ contributions

JO and LM conceptualised the study; JO conducted the literature search and abstracted the data; JO, TKP, CH and LM interpreted the data; JO wrote the original manuscript draft, and JO, TKP, CH and LM reviewed and revised the manuscript.

Funding

JO received training in research that was supported by the Fogarty International Centre of the National Institutes of Health under Award Numbers D43 TW010559 and D43 TW00934D.

Competing interests

There are no competing interests to report.

Ethical approval

Not required.

Data Availability

The data underlying this article are available in the article and in its online supplementary material.