Delayed diagnosis, gaps in services and subsequent delays in specialist care and treatment lead to poorer health outcomes for individuals with eating disorders [EDs] and drive significant government healthcare expenditure. Given the significant disease burden associated with EDs, it is imperative that current implementation research is summarised to identify gaps in care and enable refinement for optimal patient outcomes. This review aimed to provide an updated synthesis on models of care for EDs in developed healthcare systems.
Methods
This paper was conducted as part of a series of Rapid Reviews [RRs] to be published in a special series in the Journal of Eating Disorders. To provide a current and rigorous review, peer-reviewed articles published in the English language between 2009 and 2021 across three databases [ScienceDirect, PubMed and Ovid/Medline] were searched, with priority given to higher level evidence [e.g., meta-analyses, large population studies, Randomised Control Trials [RCTs]]. The current review synthesises data from included studies investigating models of care for people with EDs.
Results
Sixty-three studies [4.5% of the original RR] were identified, which included several diagnostic populations, the most common being Anorexia Nervosa [AN] [30.51%]. Across EDs, specialist care was found to improve patient outcomes, with many patients effectively being treated in outpatient or day programs with multi-disciplinary teams, without the need for lengthy inpatient hospitalisation. Few studies investigated the interaction of different ED services [e.g., inpatient, community services, primary care], however stepped care models emerged as a promising approach to integrate ED services in a targeted and cost-effective way. Issues surrounding low treatment uptake, underdiagnosis, long waiting lists and limited hospital beds were also evident across services.
Conclusion
Findings suggested further research into alternatives to traditional inpatient care is needed, with partial and shorter ‘hospitalisations’ emerging as promising avenues. Additionally, to tackle ongoing resource issues and ensure timely detection and treatment of EDs, further research into novel alternatives, such as active waiting lists or a greater role for primary care clinicians is needed.
Plain English summary
This paper is part of a larger Rapid Review series carried out to guide Australia’s National Eating Disorders Research and Translation Strategy 2021–2031. Rapid reviews aim to thoroughly summarise an area of research over a short time period, typically to help with policymaking in this area. This Rapid Review summarises the evidence relating to how we care for people with eating disorders in Western healthcare systems. Topics covered include inpatient/hospital care, residential care, day programs, outpatient/community care, and referral pathways. Findings suggested specialist eating disorder services may enhance detection, referral, and patient care. Stepped care models presented as a cost-effective approach which may help with linkage between different eating disorder services. There was a trend towards shorter hospital stays and approaches which allow for greater connection with the community, such as day programs. Evidence was also found of treatment delays, due to system issues [long waiting lists, lack of accurate assessment and diagnosis] and patient-related barriers [stigma, recognition]. Upskilling and involving primary care clinicians in diagnosis and referral as part of a stepped care model may help to address some of these concerns. Further efforts to improve mental health literacy and de-stigmatise help-seeking for eating disorders are needed.
Introduction
Eating disorders [EDs], including Anorexia Nervosa [AN] and Bulimia Nervosa [BN], are serious mental illnesses, characterised by severe disturbances in eating behaviours [] and are particularly difficult to treat, with poor treatment outcomes for some [], including high relapse rates []. Disordered eating is on the rise [] and has been associated with increased risk of developing threshold EDs [], and the lifetime prevalence of the latter has been reported to be 8.4% for females and 2.2% for males []. However, fewer than one in four of those with diagnosable EDs seek treatment [], and those who do may live with the illness for up to 10 years for BN and 15 years for AN, before starting treatment []. This is in part due to a number of patient-related factors, such as illness stigma or shame, fear of losing control and poor mental health literacy [], but also, clinician and healthcare delivery factors, such as limited ED services leading to long wait times, low engagement and drop-out [,,,]. Around half of all ED cases take a protracted course [, ], this proves to be an additional challenge for clinicians, who report high rates of burnout [,,], and at a cost of the wider health system. Being a potentially chronic illness [], EDs are particularly difficult and expensive to treat, associated with a myriad of medical complications [, ]. Delayed diagnosis, gaps in services and subsequent lack of availability in specialist care and treatment services all extend the duration for which the condition is untreated and lead to poorer health outcomes for the individual and significant government healthcare expenditure []. Further, EDs are associated with significant disease burden [] and an elevated mortality rate among the highest of all psychiatric illnesses []. Hence it is vital that we evaluate the implementation of current treatments for EDs in practice to determine gaps in service delivery for refinement to optimise care and maximise cost effectiveness.
Similar to other complex conditions, those with EDs benefit from clearly defined referral pathways and comprehensive care provided by multidisciplinary teams [MDTs][, ]. MDTs frequently include psychiatrists, psychologists, primary care physicians, dietitians and nurses who work together to address both the physical and psychological needs of the individual []. Specialist ED services are comprised by a MDT of medical and non-medical staff [e.g., psychologists] with expertise in treating EDs and the recommended treatments, who work together to set holistic treatment goals for the individual in care [, ,,]. Individuals with EDs may be treated in numerous settings, including primary [e.g., GPs/physicians], inpatient/hospital and outpatient/community care. Inpatient or hospital care refers to the hospitalisation [in general or specialised wards []] of patients to treat medical complications related to their ED []. Sometimes patients are also admitted without a medical emergency, rather to improve ED symptoms [e.g., break binge/purge cycle] [], meet weight objectives for safety, or in the case of suicidal ideation []. When care is not received voluntarily, patients may be compelled to inpatient care under local legislation [, ]. Similar treatment modalities to inpatient care include residential care – where medical monitoring, meal support and therapy [individual and group] are offered in a residential setting [] – and day programs, where patients receive supervised meal support, individual and group therapy during the day but continue residence in their homes []. These alternatives aim to improve patient experiences and outcomes by improving quality of life [QoL] [] and allowing the individual to maintain connected with their social supports and day-to-day settings [], respectively. Community or outpatient services are a step-down in intensity from day programs, typically consisting of a MDT which provides assessment and treatment, with referral to higher level care [e.g., inpatient] if needed []. These lower intensity alternatives [e.g., outpatient services, day programs] may allow individuals to practice their newly learned skills in their home settings, increasing generalisation of skills obtained in treatment [].
Reviews of current service delivery for EDs have typically explored different models of care for particular ED subtypes, including primary care [in AN, BN, BED; ], and inpatient care for AN [] and Avoidant/Restrictive Food Intake Disorder [ARFID] []; as well as compulsory treatments [], day programs [] and the relative benefits of inpatient versus outpatient care for AN and BN []. Many of these reviews have relied exclusively on randomised controlled trial [RCT] data which, despite providing high quality evidence for the effectiveness of different treatments, are not without their limitations. In particular, RCTs are expensive and logistically difficult to conduct among individuals with EDs, whose urgent medical needs preclude ethical randomisation to true control conditions [e.g., waitlist, placebo] and rarity of illness, particularly for AN, complicates recruitment []. Further, high treatment drop-out rates in ED can lead to biased results even with best practice intent-to-treat analyses, while the highly stringent eligibility criteria of RCT investigations [e.g., no other comorbid conditions, full threshold ED diagnosis] also means that diverse or more complex ED cases are not represented in these study types []. Including alternate study types [e.g., cohort or case-control design] in reviews of ED models of care may provide important insights into the progression of individuals with EDs through the health system and a better representation of the types of individuals who present to care for ED.
The aim of this Rapid Review [RR] is to synthesise the literature on models of healthcare delivery for EDs across a broad range of settings [e.g., inpatient, day programs, community/outpatient] and study types [e.g., RCTs, cohort studies]. This RR forms one of a series of reviews scoping the field of EDs commissioned to inform the Australian National Eating Disorders Research and Translation Strategy 2021–2031 []. The objective is to evaluate the current practices for ED treatment to identify gaps in current models of care and thus enable further improvement of healthcare delivery for people with EDs.
Methods
The Australian Government Commonwealth Department of Health funded the InsideOut Institute for Eating Disorders [IOI] to develop the Australian Eating Disorders Research and Translation Strategy 2021–2031 [] under the Psych Services for Hard-to-Reach Groups initiative [ID 4-8MSSLE]. The strategy was developed in partnership with state and national stakeholders including clinicians, service providers, researchers, and experts by lived experience [including consumers and families/carers]. Developed through a two-year national consultation and collaboration process, the strategy provides the roadmap to establishing EDs as a national research priority and is the first disorder-specific strategy to be developed in consultation with the Australian National Mental Health Commission. To inform the strategy, IOI commissioned Healthcare Management Advisors [HMA] to conduct a series of RRs to assess broadly, all available peer-reviewed literature on the six DSM-5 listed EDs.
A RR protocol [] was utilised to swiftly synthesise evidence in order to guide public policy and decision-making [3]. This approach has been adopted by several leading health organisations including the World Health Organisation [] and the Canadian Agency for Drugs and Technologies in Health Rapid Response Service [], to build a strong evidence base in a timely and accelerated manner, without compromising quality. A RR is not designed to be as comprehensive as a systematic review – it is purposive rather than exhaustive and provides actionable evidence to guide health policy [].
The RR is a narrative synthesis and adheres to the PRISMA guidelines []. It is divided by topic area and presented as a series of papers. Three research databases were searched: ScienceDirect, PubMed and Ovid/Medline. To establish a broad understanding of the progress made in the field of eating disorders, and to capture the largest evidence base from the past 12 years [originally 2009–2019, but expanded to include the preceding two years], the eligibility criteria for included studies into the rapid review were kept broad. Therefore, included studies were published between 2009 and 2021, in English, and conducted within Western healthcare systems or health systems comparable to Australia in terms of structure and resourcing. The initial search and review process was conducted by three reviewers between 5 and 2019 and 16 January 2020. The re-run for the years 2020–2021 was conducted by two reviewers at the end of May 2021.
The RR had a translational research focus with the objective of identifying evidence relevant to developing optimal care pathways. Searches therefore used a Population, Intervention, Comparison, Outcome [PICO] approach to identify literature relating to population impact, prevention and early intervention, treatment, and long-term outcomes. Purposive sampling focused on high-level evidence studies such as: meta-analyses; systematic reviews; moderately sized randomised controlled studies [RCTs] [n > 50]; moderately sized controlled-cohort studies [n > 50], and population-based studies [n > 500]. However, the diagnoses ARFID and UFED necessitated less stringent eligibility criteria, due to a paucity of published articles. As these diagnoses are newly captured in the DSM-5 [released in 2013, within the allocated search timeframe], the evidence base is emerging, and fewer studies have been conducted. Thus, smaller studies [n = 2000 kCal a day] and lower [