Transfer of primary care patients receiving chronic care: the next step in the continuum of care

Abstract

The burden of chronic conditions is increasing rapidly in low- and middle-income countries. Chronic conditions require long-term and continuous care, including for patients transferring between facilities. Patient transfer is particularly important in the context of health service decentralization, which has led to increasing numbers of primary care facilities at which patients can access care, and high levels of migration, which suggest that patients might require care at multiple facilities. This article provides a critical review of existing evidence regarding transfer of stable patients receiving primary care for chronic conditions. Patient transfer has received limited consideration in people living with HIV, with growing concern that patients who transfer are at risk of poor outcomes; this appears similar for people with TB, although studies are few. There are minimal data on transfer of patients with non-communicable diseases, including diabetes. Patient transfer for chronic conditions has thus received surprisingly little attention from researchers; considering the potential risks, more research is urgently required regarding reasons for and outcomes of transfers, transfer processes and interventions to optimize transfers, for different chronic conditions. Ultimately, it is the responsibility of health systems to facilitate successful transfers, and this issue requires increased attention from researchers and policy-makers.

Introduction

The burden of health conditions that require chronic care is increasing rapidly, particularly in low- and middle-income countries (LMIC).¹ The WHO defines chronic conditions as persistent health problems that require healthcare over time, including non-communicable diseases (NCDs) such as diabetes, and communicable diseases such as HIV and TB.^2,3 By definition, chronic conditions require long-term treatment and retention in care to reduce morbidity and mortality. However, healthcare systems in LMIC have developed to address acute health problems, and provision of chronic care presents a substantial ongoing challenge to these systems, programmes and policy-makers.¹

Significant changes to the health system are required to meet the demands of chronic care.^1,2 The WHO Innovative Care for Chronic Conditions guidelines provide a framework for health systems to help improve chronic care and include interventions at the levels of the patient and family, healthcare organization and policy environment.² These guidelines recognize that, to maintain continuous treatment, patients need care that extends across time, levels of care and providers. This would require efficient patient transfer between facilities, particularly in the context of decentralization of health services, which has led to increasing numbers of primary care facilities at which patients are able to obtain treatment⁴ and high levels of migration,^5,6 which suggest that patients might require access to care at multiple facilities. However, the issue of transfer of stable patients receiving chronic care is not addressed in these guidelines.

Patient transfer may take many forms, but the types, frequency, motivations and outcomes of transfer of patients with chronic conditions in LMIC are not well understood. Transfers are sometimes made as part of a broader process of transition, defined as a set of actions to ensure coordination and continuity of care as patients transfer between locations or between levels of care.⁷ Transfers can occur from lower to higher levels of care (up-referrals), from higher to lower levels of care (down-referrals) or between providers at the same level of care (lateral transfers) (Figure 1). Levels of care to or from which patients may require transfer include community- and home-based care, primary healthcare, and district, secondary, tertiary and specialized hospitals.⁸ Patients in need of complex clinical care may be up-referred to access specialized services or facilities; up-referrals may be urgent or semi-urgent, for example up-referral for hospitalization. Down-referrals may include patient transfer as part of decentralization, which is the movement of care from hospitals to clinics with the aim of improving access to care.⁹ In addition, transfer may be required between private and public services. Transfers may be health system-initiated, e.g. transfer due to clinic closure, or patient-initiated, i.e. based on patient request. Patient movement between sites can be either official or unofficial. Official transfers are known to the health system, while unofficial transfers (also called silent transfers or self-transfers) are unknown to the health system and occur when patients move between facilities without informing the original facility; these patients are often classified as lost to follow-up (LTFU) at the original facility, but are actually in care elsewhere.⁴ Thus there are many types of patient transfer; among these, up-referral,^10–12 down-referral¹³ and transfer of patients with acute problems have received some attention in the literature,^14,15 but lateral transfer of stable patients with chronic problems between primary care facilities has not been equally well studied.

Figure 1.

A typology of transfers for patients receiving care for chronic conditions.

The transfer process is central to providing continuous care to patients with chronic conditions. However, data on patient transfer in the context of chronic care are disjointed and sparse. This article aims to coalesce data on transfer of stable patients with chronic conditions between primary care facilities, in LMIC and globally, and to identify future research needs. Due to the absence of information on transfer of adults with hypertension, asthma, epilepsy and mental disorders in LMIC, this review will focus on patients with HIV, TB and diabetes, for which relatively more information exists. Each of these conditions requires long-term care, high levels of adherence and is prevalent in LMIC: in 2016, there were an estimated 10.4 million incident cases of TB,¹⁶ 36.7 million people living with HIV (PLHIV)¹⁷ and 383.5 million prevalent cases of diabetes.¹⁷ For each disease, we review the number of patients transferring, reasons for and outcomes of transfers and services to support transfers, and suggest key questions for consideration.

HIV

High levels of adherence to antiretroviral therapy (ART) are required to prevent morbidity, mortality and HIV transmission.^18,19 Access to ART has improved substantially, but high rates of drop out from ART programmes have been documented.²⁰ While mortality and LTFU have been identified as causes of attrition within ART programmes, transfers between facilities have received less attention.²¹ To achieve the 90-90-90 targets of initiating ART in 90% of those eligible and ensuring viral suppression in 90% of those on ART, patients who transfer may become an important group on which to focus.

How many patients transfer out?

A ‘cascade of care’ framework is commonly used to evaluate HIV programmes.^18,22 The traditional cascade is a linear pathway from HIV testing and diagnosis to treatment initiation and viral suppression,²³ and allows identification of the stages at which patients are lost from care (Figure 2). However, this pathway does not account for people moving in and out of care, including transfers.^22,24 It has been shown to overestimate the number of people out of care, as those who unofficially transfer may be misclassified as LTFU.^22,24 In addition, while numbers transferred out are recorded, data on those who transfer in are amalgamated with those already in care at that facility, making it difficult to discern the numbers transferred in.²⁵

Figure 2.

HIV cascade of care and patient transfer.

A number of analyses have assessed the proportion of patients in HIV care programmes who are officially transferred out, including a record review of 390 603 PLHIV accessing care in sub-Saharan Africa between 2005 and 2011 that reported 5% transferred out at 12 months.²⁶ In addition to official transfers, a substantial proportion of PLHIV unofficially transfer: a systematic review of 10 806 patients who were successfully traced after LTFU from ART facilities in sub-Saharan Africa estimated that 19% (95% CI 16–22%) had unofficially transferred.²⁷ It has also been suggested that the frequency of transfers could increase for a number of reasons, including decentralization.^4,21,27 Considering the substantial proportions of PLHIV who transfer, and that this might increase, ensuring good outcomes in these patients becomes important, particularly if we are to attain the 90-90-90 goals.

Outcomes of patient transfer

As per the traditional HIV care cascade, data on patients who transfer in are amalgamated with those already in care at that facility, making it difficult to separate outcomes for patients transferred in.²⁵ Despite this, there are a number of analyses on outcomes in PLHIV who transfer. Among patients down-referred after closure of a President's Emergency Plan for AIDS Relief (PEPFAR) funded hospital-based clinic in South Africa, an estimated 18% did not link to the receiving clinics.²⁸ Evidence of discontinuity of medication or poor adherence at the time of official transfer was obtained in a study in South Africa, where 20% of patients on ART who were transferred out had a viral load ≥1000 copies/mL.²¹ Further, in a large cohort in South Africa, mortality risk was three times higher among those transferred out compared with those retained in care.²⁹ In Kenya, delays in re-engagement in care, suggesting treatment interruptions, were documented in both officially and unofficially transferred patients, but were of longer duration in unofficially transferred patients.⁴ Both official and unofficial transfers are associated with risks to patients, underscoring the need for health systems to address this topic.

Reasons for transfer

Data on reasons for patient-initiated transfer in PLHIV are sparse; most studies have investigated patients who transferred unofficially and contained small numbers. Among 112 unofficially transferred patients in Uganda, Tanzania and Kenya, the most common reasons were transport difficulties, distance to the clinic and family obligations.³⁰ In contrast, in Nairobi, patients who unofficially transferred were found to be of higher socioeconomic status than those who remained in care, and reasons were slightly different, with 50% relocating, 32% moving to a clinic closer to home and 18% transferring for better clinic services.³¹ Socioeconomic factors and patient preference have thus been identified as reasons for transfer, but more research in different settings is required to understand why PLHIV transfer.

TB

Standardized short-course treatment for drug-susceptible TB, which lasts 6–9 months, is highly effective.^19,32 However, poor adherence and failure to complete therapy are associated with continued transmission, poor treatment outcomes including treatment failure and relapse, and drug resistance.¹⁹ To achieve the WHO END TB strategy targets of a 95% reduction in TB deaths and a 90% reduction in the TB incidence rate by 2035, regular clinic attendance and good adherence to treatment are vital, including for patients who transfer.

How many patients transfer out?

Patient outcomes are recorded and reported as per the WHO standardized reporting framework for TB, which does not track the number of patients transferred out from facilities. As per these guidelines, a patient transferred out from the facility at which they are registered should initially be classified as transferred out at the registration facility (Figure 3).³ For these patients, the original registration facility maintains responsibility for reporting final treatment outcomes. The receiving facility should follow the patient up and report the final outcome to the registration facility, where the patient should be reclassified from transferred out to the final outcome. Patients who are transferred out, but for whom the final outcome is unknown, remain classified as transferred out.³³ A number of reviews of routine data report numbers transferred out; these, however, do not indicate all patients moving between facilities, but only those for whom the final outcome is unknown.

Figure 3.

TB reporting framework and patient transfer.

In keeping with this, few studies have documented the actual number of patients on TB treatment officially transferred. In a countrywide study of 24 908 TB patients registered in Malawi in 1999, 2586 (10%) were officially transferred.³⁴ More studies report only the numbers transferred without final outcomes and provide a minimum figure for the total numbers transferred out, with estimates ranging from 0.2% among culture-positive TB patients in Taipei³⁵ to 53% of smear-positive TB patients at a TB centre in Afghanistan.³⁶ In Zimbabwe, among 225 adults with recurrent TB, of whom 135 (60%) were HIV-positive, 32 (14%) transferred out.³⁷ Data on unofficial transfers are also few. In England, 101 of 199 LTFU patients were successfully traced: 47 (47%) had transferred abroad and 13 (13%) had transferred to another clinic in the UK.³⁸ More studies on the numbers of patients on TB treatment officially and unofficially transferred are needed.

A phenomenon that has been identified in TB programmes is high proportions down-referred when TB is diagnosed at hospitals or centralized facilities. In Pakistan, among 3129 patients diagnosed with smear-positive TB at hospital outpatient facilities, 444 (14%) were down-referred.³⁹ Among 1006 inpatients diagnosed with TB at a South African hospital, 595 (59%) were referred to clinics.⁴⁰ Patients with TB who are diagnosed at higher levels of care and subsequently down-referred are thus an important group in whom to track outcomes.

Outcomes of patient transfer

Outcomes among people with TB who transfer have received less attention than among PLHIV who transfer. In Ethiopia, outcomes were traced in 457 patients who requested referral from a hospital-based clinic to surrounding facilities within 180 km: 54 (12%) did not arrive at receiving facilities and, among the 403 who did link to care, high proportions subsequently died (20, 5%) or were transferred out again (56, 14%).⁴¹ Among patients with HIV-associated TB in South Africa, those down-referred from a hospital-based clinic were more likely to default than those retained, primarily at the time of transfer and, while down-referred patients had higher treatment success and lower mortality, this is likely because retained patients had more severe disease.⁴² Overall, down-referred patients are at risk of LTFU at the point of down-referral, and might be at risk of poor TB treatment outcomes, but this requires more data.

The TB reporting framework is distinctive in that it includes back-reporting of TB treatment outcomes of transferred patients from the receiving to the original registration facilities; this is possible because it is a curable condition with final outcomes. Despite this, there are high proportions of patients with TB who are transferred out, but have unknown final outcomes. This could be due to inadequate implementation of current reporting procedures: patients who transfer out should have their final treatment outcome relayed back to the registration facility. However, this is often poorly done, leading to unknown outcomes.^41,43 Tracing outcomes in this group thus becomes important, but few studies have done so. In Afghanistan, among 170 transferred outpatients with unknown outcomes, 149 had arrived at receiving facilities, of whom 19 (13%) subsequently defaulted.³⁶ In Pakistan, 74 of 104 (71%) transferred out patients with unknown outcomes were found to have attended receiving clinics, of whom 14 (19%) failed treatment.⁴⁴ These results suggest that patients who transfer out and have unknown TB treatment outcomes are at risk of LTFU or treatment failure; improved follow-up and tracking of these patients is warranted. In addition to outcomes in patients on TB treatment who transfer, reasons for transfer have been poorly researched and require investigation.

Diabetes

Good adherence to treatment for type 2 diabetes is required to reduce morbidity and mortality.⁴⁵ However, poor adherence and high levels of non-attendance at healthcare visits have both been documented among patients with diabetes.^45,46 The Sustainable Development Goals aim to reduce deaths due to NCDs by one third by 2030 would require improved adherence to treatment. While a number of disease-related, personal and environmental factors have been identified as possible causes of poor adherence, the effect of patient transfer has been sparsely investigated.

How many patients transfer out?

Monitoring and reporting on routine care and outcomes of patients with diabetes is sparse, particularly in LMIC.^47,48 It follows that data on transfer of patients with diabetes are lacking. Estimates of numbers officially transferred out are provided by a few studies assessing implementation of electronic medical record systems to monitor patients with diabetes in routine care. In Malawi, among 1864 diabetic patients registered over the course of a year, 3 (0.2%) were documented to be transferred out at the end of the year; however, duration of follow-up was not specified and all visits were not captured.⁴⁷ In Korea, a study of 457 975 patients with diabetes with at least two health facility visits in 1 y assessed the number of patients who officially and unofficially transferred over a 1 y period: 6% used two providers, 2% used three providers and <1% used five or more providers.⁴⁹ Interestingly, 53% of patients who switched transferred laterally between primary care services. Few studies have traced outcomes in patients with diabetes who were LTFU. In London, among 47 patients who had not attended a hospital outpatient facility for 13 months, 39 (83%) had subsequently received care elsewhere.⁵⁰ These studies indicate that transfer among patients with diabetes does occur, but this needs to be assessed in other settings, particularly LMIC. Overall, data on care of diabetic patients, including numbers transferred out, are urgently needed in different settings to monitor and improve services. In addition, data on reasons for official and unofficial transfer among stable adults with diabetes are lacking and require investigation.

Outcomes of patient transfer

Research on transfer outcomes among patients with diabetes has focused on outcomes after hospital discharge. For example, linkage post-discharge was assessed in 658 inpatients discharged from a hospital in the USA: 69% attended outpatient follow-up, 15% had acute care follow-up and 16% had no follow-up.⁵¹ There is a lack of evidence on outcomes among patients down-referred from outpatient facilities and among patients laterally transferred, and this requires investigation. In addition, research on longer term outcomes and on outcomes in varied settings is needed.

Services to support transfer out

Considering the evidence regarding risks in patients who transfer, improvements to the transfer process and services to support patients who transfer are required. This requires data on current transfer practices, which are, however, lacking. For HIV, a study in rural South Africa described logistical barriers to transfer, including patients having to restart treatment at receiving facilities due to lack of paperwork.⁵² In the same study, patients described the transfer process as confusing. For HIV and diabetes, most of the research on the transfer process is in adolescents. Most interventions have been tested in diabetic adolescents;⁵³ these include structured transition programmes and the use of transition coordinators, who provide resources and support, and arrange the transfer.

Few studies have evaluated interventions to support the transfer process in adults: most have assessed changes to TB-reporting methods to decrease the numbers transferred out with unknown outcomes. In Vietnam, for example, implementation of standardized registration and reporting procedures, including evaluation of quarterly reports and comparison of patient records with the records of supervisors, led to a decrease in those transferred out with unknown outcomes from 16% in 1996 to 2% in 1998.⁵⁴ Changes to the transfer process itself were evaluated for patients with TB in Hong Kong: provision of health education and assistance with the transfer, follow-up of LTFU patients and communication with the receiving dispensary led to decreased proportions unofficially transferring, improved rates of successful transfer (not defined) and decreased proportions re-registered at the receiving facility.⁵⁵ Overall, data on transfer processes for patients receiving chronic care and how these can be improved are extremely limited and require investigation.

Future research needs

There is evidence that transfers occur frequently among PLHIV, and that those who transfer are at risk of poor outcomes. This appears similar for patients on TB treatment, although data are few. Research on transfer of diabetic patients is limited, and, for all three diseases, documentation of the transfer process and assessment of services to support transfers are minimal.

Ultimately, if we are to improve outcomes for transfer patients and strengthen chronic care, more research is needed. For TB, diabetes and chronic diseases in general, research is needed on the numbers who transfer, particularly between primary health care facilities and in LMIC, and on risks in patients who transfer (Table 1). HIV-positive patients who transfer have been found to be at risk of LTFU, poor adherence and increased mortality; these risks need to be investigated for other chronic diseases. In addition, while LTFU patients with HIV have been shown to include a number of patients in care at other clinics, work is needed in order to determine true outcomes for LTFU patients with other chronic diseases. In HIV, further characterization of longer term outcomes and associations with poor outcomes is required.

Table 1.

Future research needs regarding transfer of stable patients with chronic conditions in LMIC

Domain	Policy and programme issues	Possible research questions
Epidemiology	Frequency of transfers	How many patients with chronic conditions transfer between facilities?
		What are the trends in the number of patients who transfer, considering decentralization and universal healthcare?
		What are the factors commonly associated with transfer?
		What proportion of patients classified as lost to follow-up have unofficially transferred?
	Transfer outcomes	What are the short- and long-term outcomes in patients who transfer including linkage to care, adherence, retention in care, markers of disease severity and mortality?
		What are the risk factors for poor outcomes in patients who transfer?
Clinical	Clinical criteria for transfer	What is the clinical status of patients who transfer out and transfer in?
		Are there clinical criteria that should be met prior to transfer? If yes, what are they?
	Clinical monitoring strategies in patients who transfer	How should patients who transfer be clinically monitored to detect worsening disease status, considering cost–benefit ratios?
Social and behavioural	Reasons for patient-initiated transfer	What are the reasons that patients transfer including socioeconomic reasons, e.g. poor social support, poverty and employment, and factors related to specific facilities, e.g. staff attitudes or waiting times? How can these factors be addressed?
		Why do patients unofficially transfer instead of officially transfer?
	Adherence and retention in patients who transfer	What are the levels of adherence and retention in care during and post-transfer?
		What are the factors that affect adherence and retention in patients who transfer and how can these be addressed?
	Interventions to improve transfer	Does patient education regarding transfer processes improve transfer outcomes?
		Does patient counselling, including adherence counselling, improve transfer outcomes?
		Do clinician behaviours and attitudes affect patient transfer? How can these be addressed, if necessary?
Health systems	Current transfer processes	What are the current transfer processes and how do these differ across conditions and locations?
		What policies currently exist for transfer of patients with chronic conditions and to what extent are these implemented?
		What are healthcare workers’ and patients’ experiences of current transfer processes and how do they think transfer processes be improved?
	Optimizing the transfer process	What interventions can be implemented to assist patients with the transfer process, e.g. patient education, counselling and assistance with transfer by patient advocates?
		How much medication should be dispensed in patients who transfer?
		How should patients who transfer be followed up to ensure linkage at receiving facilities? How should those who do not link to care be followed up?
		Does removal of logistical barriers to transfer and to accessing care at new facilities improve transfer outcomes?
		What methods of sharing clinical information between facilities work best in different settings, e.g. shared electronic medical records, patient health cards and telephone calls?
		What reporting and information systems can be implemented to track patients who transfer? How can current reporting systems be modified to account for patients who transfer?

Research on reasons for transfer, the transfer process and interventions to optimize transfers is also needed for chronic diseases. For HIV, a number of improvements to the transfer process have been suggested, but have not been tested; these include simplification of transfer processes, increasing patient understanding of transfer procedures, increasing flexibility of the health system to accommodate transfers at short notice,⁵² tracking of patient outcomes⁵⁶ and the use of unique patient identifiers to facilitate tracking and transfer of information between facilities.⁵⁷ Potential interventions should consider contextual factors including the reasons for transfer, reasons for poor outcomes and the feasibility of the intervention in different settings. In patients with diabetes, interventions have largely been assessed within adolescent cohorts. Considering the large numbers of adults on treatment for diabetes, the focus on transfer of adolescents should be leveraged to the general diabetic population.

Overall, there are more data available on the transfer of stable adult patients with HIV and TB than other chronic conditions. In sub-Saharan Africa, investments have been made to address communicable diseases including TB and HIV, but NCDs have not been addressed systematically.^2,48,58,59 It has been proposed that NCDs could build from frameworks developed for HIV and TB programmes in LMIC.⁴⁸ In Malawi, for example, an electronic medical record system based on the system used for TB was implemented for diabetes.⁴⁷ However, current reporting systems for HIV and TB do not adequately account for transfers, and modifications to these and other chronic disease reporting systems to allow tracking of patients who transfer should be considered.

While this review has focused on HIV, drug-susceptible TB and diabetes, we suggest that patient transfer be considered as part of chronic disease management as a whole. Most chronic diseases require long-term care and good adherence to treatment, regardless of cause; in addition to TB, HIV and diabetes, examples include asthma, hypertension, epilepsy and mental illness. While disease-specific research is required, and certain processes may differ by condition, patient transfer should be addressed as part of integrated chronic care programmes and policies.

Conclusions

The increasing burden of patients living with chronic conditions in LMIC necessitates health systems that are able to provide continuous and long-term care. However, the management of transfer for patients with chronic conditions has been largely ignored. Research on patient transfers and interventions to support these in the context of different chronic conditions is urgently needed. Ultimately, strategies to optimize outcomes in patients who transfer are required, and this issue requires increased attention from researchers and policy-makers.

Authors’ contributions: JO and LM conceived the review; JO conducted the searches, researched the data and drafted the manuscript; LM critically revised drafts of the manuscripts; JO and LM approved the final version. JO and LM are guarantors of the paper.

Acknowledgements: None.

Funding: Research reported in this publication was supported by the Fogarty International Centre of the National Institutes of Health under Award Number D43 TW010559. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Competing interests: None declared.

Ethical approval: Not applicable.