Over a period of three decades, the number of cases of anorexia nervosa in the Netherlands has remained stable; nevertheless, during the COVID-19 pandemic, the diagnostic incidence of anorexia in Western countries was higher in 2020 and steadily increased from March 2020 to 1.5 by the end of that year [1]. However, there seems to be an improvement in the recognition of eating disorders, possibly through greater public awareness and better diagnostic tools [2]. A significant proportion of people diagnosed with anorexia nervosa develop a longer duration of the disorder, despite treatment according to guidelines [3]. These patients reported negative effects of therapy and admission to a psychiatric institution [4]. Unfortunately, the risk of dying because of an eating disorder is high [5, 6]. Recent research has shown that the mortality rate of people with AN can be up to five times higher [2], with one in five people dying by suicide [5]. Approximately half of people with an eating disorder experience partial recovery [7,8,9]. A Dutch study [3] described partial recovery in adolescents on the basis of a reduction in clinical symptoms, such as BMI, degree of functional disability and need for supervision in anorexia nervosa specifically, as described in the Eating Disorder Examination (EDE) [10, p. 265–308]. However, 30% continue to have one or more symptoms, and 20–25% have a long-lasting form of anorexia nervosa in which both physical and psychological complications have a negative impact on quality of life [7, 11, 12].

There is also an ongoing debate about the definition of severe and enduring eating disorders [4]. A recent meta-analysis posed alternative conceptualisations of the issue, considering treatment options and complex intra- and interpsychic processes of SEED-AN [13]. In our study, we use the term SEED-AN to exclude other types of long-lasting eating disorders to improve the approach [14]. Owing to a lack of international consensus, this study used the criteria in the Dutch Eating Disorders Standard; individuals are considered to have a chronic illness if AN is present continuously for 5 years or intermittently for 10 years [15].

Living with SEED-AN can have a serious impact on an individual’s quality of life, leading to psychological problems such as depression and anxiety, as well as problems with memory, concentration, eating, weight and appearance [16]. The poor nutritional status associated with anorexia can lead to serious physical complications, such as heart problems, irritation of the bowel and esophagus, and erosion of tooth enamel [14, 17]. In addition, living with SEED-AN has a negative effect on an individual’s social life [18]. Patients may feel that they are a burden to those around them and to healthcare providers [18,19,20,21,22]. Many patients are unable to study or work, which can lead to social isolation. As a result, they become dissatisfied with their lives in many areas, including health, sexuality, finances, leisure and social status. Some patients therefore live in poor physical, psychological and social conditions [18, 22, 23]. A quotation published in 2019 illustrates this:

“Dear friends,

No one has failed to notice that my health is getting worse, despite my attempts to feel better in all sorts of ways. Sometimes I seem to have found the solution, but 10 steps forward always seem to end up in 20 steps back.”

Sandy, 2019 [18, p. 35].

Overall, eating disorders are serious but treatable illnesses. Early treatment, such as family-based therapy (FBT) [24] for young people, has good outcomes. Although long-term outcomes are limited, early treatment reduces risk factors such as body dissatisfaction and low self-esteem but also promotes help-seeking behaviour and symptom recognition [25, 26].

Unfortunately, eating disorders are also the most common chronic disorders among young people [3]. The Health Council of the Netherlands has therefore recommended a unified national approach focusing on prevention and early treatment [27]. Evidence-based treatment methods are still limited; the Dutch guidelines [15] suggest an individualised plan that includes collaboration with family caregivers and/or expertise care. Current treatment options include psychological interventions, the treatment of physical complaints, pharmacotherapy, or a combination of these approaches. These treatments are available in a specialist setting (specialised eating disorder unit [SEDU]). Treatment for AN initially focused on restoring physical health and normalising weight and eating behaviour, and current treatment programmes address mainly the physical and psychological symptoms of patients with a more acute form of anorexia nervosa. These treatments seem to be more effective in younger patients with a shorter duration of illness; therefore, they do not fully address the needs of patients with SEED-AN [28, 29], namely, reducing persistent negative effects on quality of life [13, 14, 18, 23, 24].

In addition, SEDU professionals are increasingly confronted with the demand for nonspecific medical and sometimes palliative support from persons suffering from SEED-AN [30]. On the basis of the findings concerning who strongly influences quality of life, it seems reasonable that persons with SEED-AN require a different approach. Touyz et al. [22] adapted the Specialist Supportive Clinical Management Model (SSCM) [31, 32] to SEED-AN and compared the approach with CBT-E [10]. An adapted treatment paradigm was proposed; the focus should shift from complete recovery to improving quality of life and avoiding experiences of treatment failure [22, 33].

Approximately 20% of the persons diagnosed with AN remain chronically ill [9]). Unfortunately, there is no evidence-based treatment for SEED-AN [34]. Some SEDUs offer specialised help, such as group sessions, often led by a therapist and/or experienced individuals, with the aim of recognising and acknowledging the common issues (e.g., problems responsible for a diminished quality of life, physical healthcare issues) within SEED-AN [35]. Furthermore, clinical pathways are offered on the basis of SSCM [31, 32]. SSCM can improve motivation and quality of life to support recovery from the core pathology of anorexia. However, there is still insufficient knowledge about which SEED patients benefit from weight restoration versus focusing on quality of life alone. SSCM offers the opportunity to treat existing comorbidities with the primary aim of improving quality of life [36]. There are approximately twenty SEDUs in the Netherlands. These SEDUs offer a stepped-up, stepped-down strategy of care to all eating disorder patients, including those in the SEED-AN [1]. However, not every SEDU offers treatment to individuals with SEED-ANs. In addition, follow-up contact in the patient’s own region after the end of treatment is often suggested. For patients who live a long way from an existing eating disorder programme, this follow-up process is not always possible if a suitable solution cannot be found. In addition, the physical condition of the SEED-AN patient also plays a role, which makes travelling to an SEDU challenging. Early findings from a recent study focusing on peer support were hopeful, and a reduction in feelings of isolation and hopelessness was observed [37]. Therefore, it seems logical to provide follow-up treatment after the end of SEDU contact through a regional outreach programme to prevent relapse and to work towards improving quality of life.

In the Netherlands, there is a separate mental health care system for people with severe mental illness (SMI). SMI is characterised by a persistent and severe mental disorder accompanied by limitations in social and societal functioning [38, 39]. A flexible assertive community treatment (FACT) approach has been developed and broadly implemented in the Netherlands [40]. In the Netherlands, one FACT team is responsible for the mental health care of an average of 200 SMI patients in a postcode area of approximately 50,000 people, focusing on goals related to physical, psychological, social and societal aspects as well as (partial) recovery and rehabilitation. FACT teams provide support in the person’s own environment and social network [40]. The FACT method is a well-researched, evidence-based intervention that has been implemented in many countries [41]. FACT offers a similar philosophy, such as harm reduction approaches [42, 43], for instance, the HARMONI programme (HARm MinimalisatiON In chronic anorexia nervosa) [42]. However, a difference is the stepped-up, stepped-down philosophy as a main issue in FACT. FACT care then offers support in patients’ own environment and, if needed, in patients’ own home. Finally, FACT teams are composed of a variety of professionals, including psychiatrists, social workers and nurses, providing a broad range of expertise. It promotes a holistic approach where physical, psychological and social aspects remain central [44]. Given the complexity of mental health conditions and the discontinuity of care, coordinated care is indicated for persons with SEED-AN [44]. According to Delespaul (2013), persons with SEED-AN fulfil the criteria for SMI [45], and recent study findings underpin this statement [38]. Then, the (after)care for SEED-AN can be permanently improved by implementing active collaboration between the SEDU and FACT teams [18]. In practice, however, persons with SEED-AN are often excluded from FACT services because of the association between underweight and other serious health risks.

Despite the lack of exact numbers of presented SEED-AN patients benefiting from appropriate therapy in the Netherlands, it is assumed that not every SEED-AN patient receives appropriate support. This assumption is based on a small sample of the two mental health organisations involved in this research, the Parnassia Psychiatric Institute and Emergis, both located in the southwestern Netherlands. To explain this, a thorough look was taken at the following: (1) the current therapy offered by the SEDU programmes accessible to SEED-AN patients, and (2) the presence of the DSM-5 diagnosis of eating disorders in the patient bases of the FACT teams.

In the explanation of issue (1) Scrutinising the SEDU programmes revealed the following: There is an (outpatient) clinical therapy service for SEED-AN, provided within the network by Emergis. Ten beds are available, and outpatient (follow-up) care is provided for a period of up to 2 years. The treatment offered is supraregional; potentially, every Dutch SEED-AN patient can benefit from this treatment. However, this is a difficult issue; there is often a need for structural aftercare, which cannot always be provided because of distance. Then, issue (2) The sampling was carried out in the two mental health organisations involved. The DSM-5 code was searched within the patient base of the FACT teams. For privacy reasons, patient numbers and/or other personal characteristics that could be associated with individuals were not visible. The sample from Emergis included 2 people diagnosed with AN who received care at FACT Emergis. At the Parnassia Psychiatric Institute, samples were taken from two FACT care bases (PG-FACT Haaglanden and PG-FACT Rijnmond). The sample included 22 people diagnosed with comorbid AN (private administrative data, 2021). In total, 24 people diagnosed with AN were treated by FACT teams operating in the Dutch regions of Zuid-Holland and Zeeland in 2021. It is assumed that a substantial number of SEED-AN patients are not represented in FACT care.

This study aims to systematically examine the experiences of professionals and patients regarding existing care for SEED ANs across two settings in two health districts in the Netherlands. Namely - Specialised ED Unit and FACT.

The following research question was formulated: Can, and if so, how do FACT teams contribute to the treatment of patients suffering from SEED-AN from the perspective of professionals and SEED-AN patients?

Its objectives were as follows:

Create a deeper understanding of how patients with SEED-AN already perceived support from the FACT service;

To gain a deeper understanding of the beliefs and attitudes of both FACT professionals and SEDU professionals towards SEED-AN;

Identify the perceived barriers experienced by both FACT and SEDU professionals in approaching patients suffering from SEED-AN;