A systematic review of contemporary models of shared HIV care and HIV in primary care in high-income settings

Introduction

Human Immunodeficiency Virus (HIV) infection is now a manageable chronic condition with near normal life expectancy for those who are diagnosed early, and with access to antiretroviral therapy (ART) and high-quality medical care. ¹ However, HIV remains incurable, unpredictable and stigmatised, and drug resistance, toxicity and drug–drug interactions can make even routine monitoring a complex task. ² Historically, care has been delivered by HIV specialist services, a model popular with patients as all healthcare needs could be met through the same service; it circumvented issues of confidentiality, perceived prejudice and ignorance of HIV by GPs. ³ This also allowed patients to avoid prescription charges, ⁴ at the start of the epidemic, many people with HIV were not registered with a local GP. ⁵ The model also benefitted specialists as it enabled development of HIV expertise ⁶ and facilitated research opportunities.^5,7 However, some patients perceived specialist clinics to be a more stigmatising environment than community services. ⁸

Reduced HIV-related mortality, ⁹ relatively high incidence as well as increased HIV detection though expansion of testing ¹⁰ are contributing to rising numbers of people with HIV. ¹¹ Healthcare services are facing new challenges including an ageing population with concurrent HIV-related and unrelated conditions. ¹² It has been suggested that an HIV specialist-delivered model may no longer provide optimal, financially sustainable care, particularly if HIV is to be considered as a chronic condition, for which current health policy favours predominately general practice-based care.^2,13

General practice has expertise in many HIV associated co-morbidities such as lipid disturbance and cardiovascular disease ¹³ and there is evidence of increasing disclosure and involvement of GPs in patient care, ¹⁴ in line with national recommendations. ²

Shared care conceptualised as ‘the responsibility for the healthcare of the patient…shared between individuals or teams who are part of separate organizations, or where substantial organizational boundaries exist’ ¹⁵ (p. 8) and ‘the joint participation of GPs and hospital consultants in the planned delivery of care for patients with a chronic condition, informed by an enhanced information exchange over and above routine discharge and referral letters’. ¹⁶ (pp. 447–448) Shared care for asthma and diabetes mellitus has been reported to improve care quality, facilitate knowledge transfer and communication between levels of care and engage the patient with the care process ¹⁵ (p. 262) although findings from a Cochrane Review of the effectiveness of shared care were inconclusive. ¹⁷ HIV shared care might be a feasible alternative to the current specialist-delivered model in the UK. This systematic review aims to determine the evidence for HIV shared care and management of HIV in general practice in high-income settings in terms of clinical, economic and patient-satisfaction outcomes, to inform future HIV healthcare commissioning.

Methods

We conducted a comprehensive search of published and grey literature using Ovid SP MEDLINE, Ovid SP EMBASE, NICE Evidence, the Cochrane Collaboration, Google and specialist websites including those of British HIV Association, Aidsmap, Public Health England, World Health Organization and Terrence Higgins Trust. The search strategy is provided as a supplementary file. We kept inclusion criteria deliberately broad to obtain a diverse selection of literature: studies written in English and published from the year 2000 onwards, to capture well-established treatment regimens and disease management after the introduction of highly active antiretroviral therapy in 1996. Final searches were performed in August 2014.

We excluded studies from low-income countries and settings with healthcare systems which did not offer universal healthcare coverage, free HIV treatment or significantly reduced treatment costs; their main objective was not HIV treatment or because they discussed integrating HIV with another service rather than a model of care shared with general practice.

We imported the search results into EndNote X7 to manage the data and remove duplicates. One researcher manually screened titles and abstracts to eliminate unsuitable and irrelevant studies. A second researcher independently screened a random 10% of items returned in the initial search to check robustness of the initial screening with good concordance. The remaining studies were read in full and assessed according to eligibility criteria. One researcher manually searched cited references in papers to expand the literature base and used a snowball sampling procedure to further increase data for the review. Two researchers read full texts of selected studies and made comparisons according to agreed study parameters using a specifically designed data extraction form to minimise the impact of the heterogeneity of the returned literature. Parameters for comparison included: study design; objectives; location/setting; client group; links to specialised care, GP involvement and other services; funding, training, professional support; patient satisfaction or any clinical, economic or acceptability outcome. We used principles of the Critical Appraisal Skills Programme frameworks ¹⁸ to guide appraisal of peer-reviewed studies and the AACODS (Authority, Accuracy, Coverage, Objectivity, Date, Significance) checklist ¹⁹ for assessment of grey literature.

Results

Searches of all data sources returned 2621 results of which 428 duplicates were removed (see Figure 1). After a two-stage screening process to exclude studies not relevant to this review based on the eligibility criteria, eight remaining studies detailed nine models of shared care from five different countries: Australia, Switzerland, Germany, Canada and UK (see Tables 1 and 2 in supplementary material). ‘Shared care’ was not a term used to describe all of the models; the CHAIN ²¹ referred to their service as a ‘collaborative model’, the Canadian study ²² detailed implementation of the chronic care model for HIV care and other studies focused on the expansion of the role of primary care^4,23 within HIV care provision. OPEN IN VIEWER

Six of the nine models came from peer-reviewed literature with a range of study designs: prospective cohort,^22,24 a cross-sectional study using quantitative and qualitative data, ⁷ observational work ²¹ and service case studies.^6,25 Data collection and analysis methods, where relevant, were briefly described making quality assessment of results more difficult and only two studies^22,24 included statistical significance tests with reported p values. The two case studies^6,25 provided insights into implementation of shared care to treat marginalised groups but reported no outcome data.

Common elements of shared care included established relationships between HIV specialists, GPs and people living with HIV, and shared decision-making about treatment and care. Empirical service development was often driven by patient need^6,7 particularly when traditional specialist services were not well accessed by certain groups. The UK models^4,23 described barriers to using local GP services. The Swiss cohort study ²⁴ reported that only 7.5% (n = 8/106) chose shared care and 10.4% (n = 11/106) changed their treatment setting: the majority moved away from shared care, despite good patient satisfaction and clinical outcomes. Adapting the chronic care model ²² resulted in statistically significant improvements in clinical indicators although 14.5% (n = 39/269) of participants died during the study period. Stable housing had the greatest effect on mortality, highlighting the need to take a comprehensive approach to HIV care.

Lack of adequately trained HIV specialists drove development of shared care in some settings. ²¹ The need for adequate training for participating healthcare professionals was acknowledged, irrespective of professional discipline. Appropriate and timely communication was recognised as a facilitator to shared care arrangements and was achieved through both formal and informal partnerships between GPs and specialists (as well as public and private care). Small professional networks helped coordinate care effectively and build relationships and characterised all except the German model of GPs ⁴ which was reported in insufficient detail to evaluate meaningfully. Five models^7,21,23–25 reported some data on additional funding requirements from government or health insurers; one NHS service specification ²³ detailed cost data. The Care and Prevention Programme ⁷ was financially unsustainable despite GPs taking lower personal incomes which are likely to impact the feasibility of similarly funded programmes.

Only two studies^22,24 reported clinical outcomes with supporting data. These included: CD4 count, viral load, ART uptake, previous AIDS diagnoses and an assessment of treatment success and feasibility. Generally reported outcomes, although not well quantified, were reported to benefit both patients and providers, and included improved management of people with complex HIV infection, better access to services and expert knowledge, patient empowerment and engagement, high patient satisfaction and quality of life, and better health outcomes compared to traditional care models. There are no known independent evaluations of any of the included models; Page et al. ²⁴ included an integrated patient satisfaction scale into their study and although one other study ⁶ mentioned the integrated data monitoring and evaluation capacity of the service, there is no outcome data known to the authors.

Discussion

Although models of HIV shared care and HIV in primary care have been described in high-income settings, none have been explored in the context of robust trials. Overall, there is insufficient evidence to determine whether HIV shared care is able to consistently deliver high-quality outcomes, is acceptable to patients or is cost effective. There are no published health economic analyses of HIV shared care other than reported partial costs in one UK-based study. ²³ Data from the UK are scarce; the few models described in the international literature are driven by patient^6,7 or provider ²¹ need and are highly context specific. The shared care models reviewed here tended to utilise professional networks^7,21,22,25 to share knowledge and skills among providers and/or a primary care centre of excellence approach in which existing facilities developed HIV specialist capacity internally with links to other specialist services.^6,7,22 Factors which appear to be associated with well-functioning models of HIV shared care include good communication between primary and specialist providers,^4,21 partnership working,^7,21,22,25 patient choice,^4,24 adequate staff training^{4,6,7,21,23–25} and robust care protocols.^4,6

Barriers to sharing the care of HIV patients were less commonly described but when mentioned, funding was a significant issue for services^7,21,25 Rogers et al. ⁷ considered maintaining the skillset of the clinical workforce and the vulnerable political situation as additional threats to the long-term feasibility of shared care.

This review provides a timely analysis of models of HIV shared care and HIV in primary care in a policy climate of ‘care closer to home’, ²⁶ in which a growing role for GPs in the management of many chronic conditions is advocated. Although national guidance recommends involvement of primary care in the management of people with HIV,^13,27 there is no accepted scope or model for its delivery. For the purposes of this review, we used a broad definition of shared care^15,16 and applied it to the HIV setting. This meant that we maintained sufficient studies in the review but comparison of outcomes across different models of care was not appropriate and much of our analysis was, by necessity, descriptive. Terminology can have different meanings in different healthcare settings and relevant studies which used alternative nomenclature may have been overlooked. In line with current service provision in the UK, this review adopted a more specialist-centric perspective which influenced data extraction, interpretation and synthesis of results and may have limited the scope of the conclusions drawn. In an attempt to be as comprehensive as possible, we included grey literature in this review but comparison of findings was challenging.

The findings from this study are in contrast to a systematic review by Wong et al. ²⁷ which focuses more on the role of primary care in providing HIV shared care. The review included three cost-effectiveness studies as well as randomised controlled trials and the authors concluded that primary care has an important and effective role in shared care HIV diagnosis and management and it is cost effective to undertake HIV screening in primary care. The inclusion criteria for studies were broader than for this review, particularly in defining primary care and how services linked to HIV specialists and evidence were also included from lower income countries and the USA. Although drawing more cautious conclusions about the effectiveness of shared care for HIV management, this review supplements the findings of Wong et al. ²⁷ by collating evidence with a focus on more specialised services implementing shared care and the type of models that already exist or have been proposed and targeted towards high-income countries with good health service access and affordability.

There remains a lack of clarity about what constitutes shared care. The definition^15,16 used to guide this review focuses on sharing the care of the patient rather than sharing the management of the disease. In many high-income countries including USA,^28,29 Germany, ⁴ Switzerland ²⁴ and Australia,^6,7,21,25 patient care and disease management are linked and the health system allows freedom of choice to select different providers, enabling the development of HIV centres of excellence in primary care. Many health systems (excluding UK) require patients to pay a set fee, such as a co-payment, for each healthcare service visit, placing the patient and the quality of their care at the forefront of provider services and providing an existing mechanism to enable potential financial viability for models of shared care. In the UK the contract for HIV care is between providers and the state with few additional mechanisms for paying for HIV-related services provided in the community ²³ and distancing the patient from decisions about their care.

Guidance from national HIV specialist bodies^2,13 and other organisations ⁴ overwhelmingly supports greater GP involvement in the care of HIV-positive people. Findings from a London survey ³⁰ suggest that people with HIV have a high level of satisfaction with their specialist HIV care providers and the vast majority had disclosed their HIV status to their GP.

However, there are many reported barriers to involving their GP in their care including lack of availability of prompt appointments, poor documentation of clinical information and perceived prescribing errors. Some survey respondents also reported that a lack of continuity of care and poor communication meant they acted as the ‘go-between’ ³⁰ (p. 53) between GPs and HIV specialists. These concerns are acknowledged by advocacy groups which have suggested that routine management of HIV as a chronic condition in primary care may not be appropriate and sharing care can fragment care when multiple providers are involved. ³¹ Of note, it may be difficult for new models of HIV care to deliver the excellent clinical outcomes which have been a feature of UK specialist HIV care since introduction of effective antiretroviral therapy.

Many specialist providers of HIV care offer telephone or email-based ‘stable patient’ services which appear popular with patients. Offering this type of care either more flexibly or more cheaply in primary care settings may be challenging.

Some GPs have expressed a desire to deliver more care for people with HIV, whilst acknowledging that appropriate education is necessary for the whole primary care team. ³² Accessibility and availability of core services, such as phlebotomy, may dictate where patients choose to access care. The need to run longer appointment times and open practice boundaries has been highlighted ² and is currently being piloted in a number of major conurbations in England. ³³ It is also worth noting that as HIV is less ubiquitous than many other chronic conditions treated in primary care, effective management may necessitate a minimum number of patients per practitioner, a stipulation of the NHS Sussex service specification. ²³ Areas with a higher prevalence and/or risk of contracting HIV would be well suited to concentrated management in selected primary care centres. However, areas with fewer HIV patients would need to adopt different models of HIV shared care.

A NHS service specification for adults with HIV has been published recently. ³⁴ Although it details requirements for specialised care, it does not address any related services such as general practice, which are commissioned locally.

We have framed the topic of shared care using the existing UK service delivery model through specialist services as the basis for future models; this approach tends to consider primary care as an additional service element gradually taking on some of the more routine care duties traditionally carried out by specialist services rather than an inter-disciplinary model of care. In fact one of the key drivers for sharing HIV care with primary care services is the response of the majority of patients to ART ³⁵ ; HIV is now a manageable infection with patients maintaining good health and any medical issues arising are likely to relate to co-morbidities which could be well managed in the community.

Broadening the scope of HIV care would better justify the role of primary care in a future model of shared care. HIV screening, counselling and treatment have already been shown to be as effective in primary care as specialist care, ²⁷ and a broader care remit would also encompass prevention of transmission, retention in care, reduction in late HIV diagnosis and managing co-morbidities.

UK national guidance proposes a number of theoretical models ¹³ of shared HIV care which include GP management of HIV in stable patients with annual specialist review; GP management of non-HIV related conditions and conditions in which they have expertise such as cardiovascular and lipid pathologies; GP outreach within HIV specialist services, and specialists working outreach sessions alongside GPs in primary care. Although these models may confer benefit, our review could not provide evidence to suggest that shared care can provide similar outcomes to specialist care or which elements and models would be effective. Even with a substantial shift of HIV management to primary care, specialist services would need to be maintained with sufficient expertise and resource to take on more complex care needs.

While there appears to be widespread support for greater involvement of GPs in the care of people with HIV, HIV shared care remains a developing concept without a universally accepted definition. Some, disparate models exist,^{4,6,7,21–25} and a number have been proposed,^4,13,36 which include variable elements of primary care delivered HIV care and networks of professionals to provide education and training opportunities as well as ongoing clinical support. These approaches may guide the development of future models of shared care and although encouraging, these models have not been extensively evaluated, cost effectiveness has not been established and service user opinions are lacking. The success and popularity of HIV specialist services in the UK^4,30 together with the risks of inadequate follow up and failure to retain people with HIV in care must be considered when new models of care are proposed as well as the division of responsibility locally and associated clinical governance. Robust evaluations of properly funded and well-defined models of HIV shared care, which include comparison with specialist services, measuring clinical outcomes, cost effectiveness and patient acceptability are crucial to determine whether and what type of HIV shared care models are appropriate for future service delivery. Pre-implementation modelling may be a sensible first step to help determine the public health consequences and healthcare costs of this type of shift of care.