Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-10-31T08:19:48.922Z Has data issue: false hasContentIssue false

Pathways to eating disorder care: A European multicenter study

Published online by Cambridge University Press:  24 April 2023

Alessio Maria Monteleone*
Affiliation:
Department of Psychiatry, University of Campania L. Vanvitelli, Naples, Italy
Eugenia Barone
Affiliation:
Department of Psychiatry, University of Campania L. Vanvitelli, Naples, Italy
Giammarco Cascino
Affiliation:
Department of Medicine, Surgery and Dentistry ‘Scuola Medica Salernitana’, University of Salerno, Salerno, Italy
Ulrike Schmidt
Affiliation:
King’s College London, Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, London, UK South London and Maudsley NHS Foundation Trust, London, UK
Philip Gorwood
Affiliation:
Université Paris Cité, Paris, France GHU Paris Psychiatrie et Neurosciences (CMME), Paris, France INSERM U1266, Paris, France
Umberto Volpe
Affiliation:
Section of Clinical Psychiatry, Department of Clinical Neurosciences/DIMSC, Università Politecnica delle Marche, Ancona, Italy
Giovanni Abbate-Daga
Affiliation:
Eating Disorders Center for Treatment and Research, Department of Neuroscience, University of Turin, Turin, Italy
Giovanni Castellini
Affiliation:
Psychiatry Unit, Department of Health Sciences, University of Florence, Florence, Italy
Marina Díaz Marsá
Affiliation:
Eating Disorder Unit, Hospital Clínico San Carlos, Universidad Complutense, Cibersam, Madrid, Spain
Angela Favaro
Affiliation:
Neurosciences Department, University of Padua, Padua, Italy
Akira Fukutomi
Affiliation:
South London and Maudsley NHS Foundation Trust, London, UK
Sebastien Guillaume
Affiliation:
Department of Emergency Psychiatry and Acute Care, CHU Montpellier and University of Montpellier, Montpellier, France
Petr Minařík
Affiliation:
First Medical Faculty of Charles University and General University Hospital in Prague, Prague, Czech Republic
José Antonio Soriano Pacheco
Affiliation:
Servei de Psiquiatría, Hospital de Sant Pau, Barcelone, Spain
Matteo Panero
Affiliation:
Eating Disorders Center for Treatment and Research, Department of Neuroscience, University of Turin, Turin, Italy
Hana Papežová
Affiliation:
First Medical Faculty of Charles University and General University Hospital in Prague, Prague, Czech Republic
Valdo Ricca
Affiliation:
Psychiatry Unit, Department of Health Sciences, University of Florence, Florence, Italy
Cristina Segura-Garcia
Affiliation:
Department of Medical and Surgical Sciences, University Magna Graecia of Catanzaro, Catanzaro, Italy
Elisabetta Scanferla
Affiliation:
Université Paris Cité, Paris, France GHU Paris Psychiatrie et Neurosciences (CMME), Paris, France
Marta Tyszkiewicz-Nwafor
Affiliation:
Department of Psychiatry, Poznan University of Medical Sciences, Poznan, Poland
Fernando Fernandez-Aranda
Affiliation:
Clinical Psychology Unit, Bellvitge University Hospital-IDIBELL and CIBERobn, ISCIII, Barcelona, Spain Clinical Sciences Department, School of Medicine and Health Sciences, University of Barcelona, Spain
Ulrich Voderholzer
Affiliation:
Schoen Clinic Roseneck, Prien am Chiemsee, Germany Department of Psychiatry and Psychotherapy, University Hospital Munich, Munich, Germany
Janet Treasure
Affiliation:
King’s College London, Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, London, UK South London and Maudsley NHS Foundation Trust, London, UK
Palmiero Monteleone
Affiliation:
Department of Medicine, Surgery and Dentistry ‘Scuola Medica Salernitana’, University of Salerno, Salerno, Italy
*
Corresponding author: Alessio Maria Monteleone; Email: alessiomaria.monteleone@unicampania.it

Abstract

Background

The aim of this study was to assess barriers and facilitators in the pathways toward specialist care for eating disorders (EDs).

Methods

Eleven ED services located in seven European countries recruited patients with an ED. Clinicians administered an adapted version of the World Health Organization “Encounter Form,” a standardized tool to assess the pathways to care. The unadjusted overall time needed to access the ED unit was described using the Kaplan–Meier curve.

Results

Four-hundred-nine patients were recruited. The median time between the onset of the current ED episode and the access to a specialized ED care was 2 years. Most of the participants did not directly access the specialist ED unit: primary “points of access” to care were mental health professionals and general practitioners. The involvement of different health professionals in the pathway, seeking help for general psychiatric symptoms, and lack of support from family members were associated with delayed access to ED units.

Conclusions

Educational programs aiming to promote early diagnosis and treatment for EDs should pay particular attention to general practitioners, in addition to mental health professionals, and family members to increase awareness of these illnesses and of their treatment initiation process.

Type
Research Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2023. Published by Cambridge University Press on behalf of the European Psychiatric Association

Introduction

Eating disorders (EDs) are severe mental illnesses with modest rates of remission and frequent relapses [Reference Eddy, Tabri, Thomas, Murray, Keshaviah and Hastings1Reference Leichsenring, Steinert, Rabung and Ioannidis3]. It is widely known that their early detection and treatment lead to a better outcome [Reference Johnson, Cohen, Kasen and Brook4Reference Andrés-Pepiñá, Plana, Flamarique, Romero, Borràs and Julià6] and reduced social burden [Reference Yárnoz‐Esquíroz, Lacasa, Riestra, Silva and Frühbeck7]. The National Institute for Health and Care Excellence (NICE) guidelines [8] recommended that treatment should be provided “at the earliest opportunity.” However, literature studies showed a delay in the access to specialist treatments for patients with either anorexia nervosa (AN) [Reference Neubauer, Weigel, Daubmann, Wendt, Rossi and Löwe9] or other EDs [Reference Austin, Flynn, Richards, Hodsoll, Duarte and Robinson10] that has been estimated between 2 and 5 years. Illness-related factors, such as the lack of patients’ awareness of illness, or the stigma related to mental illnesses, contribute to this delay[Reference Ali, Farrer, Fassnacht, Gulliver, Bauer and Griffiths11]. Several barriers to treatment access also occur and may depend on the characteristics of the clinical pathways that lead individuals with EDs to specialist care although they have not been adequately investigated [Reference Ali, Farrer, Fassnacht, Gulliver, Bauer and Griffiths11, Reference Regan, Cachelin and Minnick12]. Indeed, most of the studies adopted a qualitative method, which did not allow to quantify the importance of each barrier and did not employ validated questionnaires assessing the relative contribution of each barrier [Reference Ali, Farrer, Fassnacht, Gulliver, Bauer and Griffiths11].

The complexity of ED pathways is amplified by the challenging nature of these illnesses, which are associated with high rates of psychiatric [Reference Godart, Perdereau, Rein, Berthoz, Wallier and Jeammet13, Reference Hopwood, Pincus and Wright14] and somatic comorbidities [Reference Voderholzer, Haas, Correll and Körner15] and a high mortality risk [Reference Hoang, Goldacre and James16, Reference Auger, Potter, Ukah, Low, Israël and Steiger17]. Thus, their treatment typically involves several healthcare disciplines (i.e., internal physicians, psychologists, and nutritionists) [Reference Monteleone, Fernandez‐Aranda and Voderholzer18, Reference McGorry, Mei, Chanen, Hodges, Alvarez-Jimenez and Killackey19]. This explains why individuals with EDs make considerable use of mental and physical health services [Reference Patton, Coffey, Carlin, Sanci and Sawyer20] and consult general practitioners more frequently than controls in the five years before their ED diagnosis [Reference Ogg, Millar, Pusztai and Thom21]. A recent study [Reference Tu, Tseng and Chang22] showed that nearly all patients with AN or bulimia nervosa (BN) in Taiwan had sought help for physical problems in the year before the ED diagnosis: in this period, medical wards were more often involved in the hospitalization of these patients than psychiatric wards and gynecologists and family medicine were the most consulted specialists [Reference Tu, Tseng and Chang22]. Furthermore, the leading diagnoses were not ED diagnoses (instead, anxiety and depressive disorders and personality/neurotic/sleep disorders were diagnosed) or were broadly defined EDs [Reference Tu, Tseng and Chang22, Reference Demmler, Brophy, Marchant, John and Tan23]. In sum, the detection of other leading diagnoses is a diagnostic delay that contributes to lack of early referral to treatment, and optimizing early detection and access to specialist services should be clinical and research priorities [Reference Herpertz‐Dahlmann, Bonin and Dahmen24].

A useful tool to explore the clinical pathways of patients with EDs to specialist services is the “pathways to care” approach. The “pathways to care” studies have been widely used to explore the help-seeking behaviors of individuals suffering from severe illnesses [Reference Rogler and Cortes25, Reference Campbell, Hotchkiss, Bradshaw and Porteous26]. More recently, a specific and standardized tool has been developed in collaboration with the World Health Organization to assess the routes followed by psychiatric patients to seek help for their mental health problems [Reference Sartorius, Jablensky, Korten, Ernberg, Anker and Cooper27]. This instrument allowed researchers to assess variations of pathways to mental healthcare across different countries [Reference Volpe, Mihai, Jordanova and Sartorius28].

The aim of this multicenter study was to assess the pathways to specialist care in individuals suffering from EDs in different European countries. First, the number and the type of health professionals involved in the pathway, who suggest seeking care, and the symptoms occurring before the referral to specialist health professionals have been identified. Second, the length of the pathway occurring between the onset of the current ED episode or the access to the first health professional of the pathway up to the referral to specialist ED services has been explored. Third, the barriers interfering with the referral to specialist ED centers have been investigated. Based on previous findings in the Italian population [Reference Volpe, Monteleone, Ricca, Corsi, Favaro and Santonastaso29], we hypothesized that the involvement in the pathways of non-ED specialist healthcare professionals may promote delayed referral to specialist ED services, while the suggestion to seek care coming from relatives may favor earlier referrals. These findings will help to extend previous evidence [Reference Volpe, Monteleone, Ricca, Corsi, Favaro and Santonastaso29] and to develop international educational programs.

Methods

Participants

Patients were recruited from those consecutively seeking care at the following European specialist ED units: University of Campania Luigi Vanvitelli (Italy); General Hospital and 1st Medical Faculty of Charles University in Prague (Czech Republic); CMME, GHU Paris Psychiatrie et neurosciences (France); Université de Montpellier (France); Schoen Clinic Roseneck (Germany); Univeristy of Florence (Italy); University of Padua (Italy); University “Magna Græcia” of Catanzaro (Italy); University of Turin (Italy); Poznan University of Medical Sciences (Poland); Hospital Clínico San Carlos, Universidad Complutense (Spain); Servei de Psiquiatría, Hospital de Sant Pau, Barcelona (Spain); South London and Maudsley NHS Foundation Trust Eating Disorders Service, London (United Kingdom). A specialist ED unit was defined as a center providing a comprehensive multidisciplinary treatment by professionals with long-lasting experience in the treatment of EDs. An invitation to participate in the study was sent to all members of the ED sections of the European Psychiatric Association and of the World Psychiatric Association. Twenty-three members responded and were affiliated with a specialist ED unit meeting the above criteria and were included among the recruiting centers. Twelve out of 23 centers were not able to carry out the survey mainly due to internal technical difficulties (namely, lack of available research staff).

In accordance with the pathways methods [Reference Gater, Jordanova, Maric, Alikaj, Bajs and Cavic30], one Principal Investigator (PI) was identified in each ED Unit who had to recruit at least 25 patients who had access to the specialistic ED center (inpatient, outpatient, or day-patient). The recruitment was scheduled from September 1, 2020 to October 31, 2020: with respect to usual pathways studies [Reference Gater, Jordanova, Maric, Alikaj, Bajs and Cavic30, Reference Gater, Sousa, Barrientos, Caraveo, Chandrashekar and Dhadphale31] the survey period was extended from one to two working months to ensure each center to collect at least 25 patients. However, the COVID-19 pandemic restrictions limited the access to care all over the world also for individuals with EDs [Reference Monteleone, Cascino, Barone, Carfagno and Monteleone32]. Therefore, the deadline for recruitment was extended to September 2021 to allow each participating center to enroll patients in a period in which the access to specialist care was not affected by the local restrictions imposed for the pandemic. If a center had the possibility to recruit more than 25 patients in the study period, this was allowed. The criteria for patient inclusion were: a) diagnosis of ED according to the DSM-5 criteria [Reference First, Gaebel, Maj, Stein, Kogan and Saunders33], confirmed by the Structured Clinical Interview for DSM-5 –Clinician Version (SCID-IP) [Reference First34]; b) acceptance to join the study. Exclusion criterion was the referral to one of the participating ED centers directly from another ED specialist center.

The study was approved by the Ethical Committee of the Coordinating Center (i.e., the University of Campania “L. Vanvitelli,” Naples, Italy, number of protocol: 0015734/i 01/07/2020). Each participant was asked to give his/her written informed consent to participate into the study after being properly informed with a complete description of the study aims and methods.

Materials and procedure

A pathway to care starts when a person develops a psychological problem, or a health problem with an important psychological component, and the first decision is taken to seek care from a health professional. Subsequently, any number of different (including mental) health professionals may be involved, but the pathway ends with the current consultation at the specialist ED unit. A diagram of the overall pathway to care for participants has been provided in Figure 1.

Figure 1. Diagram of the general pathway to care for participants. Point “x” indicates one of the health professionals who were seen before the access to the ED unit.

In order to define the pathways to care of individuals with EDs, a face-to-face structured interview (the “Encounter Form,” EF) [Reference Gater, Sousa, Barrientos, Caraveo, Chandrashekar and Dhadphale31] was employed. This is a slightly modified version of the original tool developed by the World Health Organization and has been described in the Supplementary material S1.

Statistical analysis

Descriptive statistics were used to summarize study variables. The number of months elapsing between the onset of the symptoms of the current ED episode and the access to a specialist ED unit, the number of months elapsing between the first contact with a health professional of the specialist pathway and the arrival at the ED unit, and the number of health professionals included in the specialist pathway for ED care were reported as median values as the distribution of these variables was significantly skewed. The prevalence of each variable measured at the time of referral to the specialist pathway was compared with that measured at the referral to the specialist ED unit through McNemar’s test for non-parametric data. Differences among countries were calculated by means of chi-square test for categorical variables and one-way ANOVA followed by Tukey’s post-hoc test for continuous variables.

The unadjusted overall time to access to ED units was described using the Kaplan–Meier curve. Multivariate Cox proportional hazards regression was used to assess associations, measured as hazard ratios (HRs), between covariates and time [Reference Bradburn, Clark, Love and Altman35, Reference Bradburn, Clark, Love and Altman36]. Patients’ age, marital status, country, social position, presence of ED specific symptoms or somatic symptoms or general psychopathology, current ED diagnosis, history of access at another ED unit, the previous carer, and who suggested the patient to seek help were the covariates entered in the model. In the “general psychopathology” variable anxious and depressive symptoms, interpersonal and behavioral problems, suicide attempts, and sleep disturbances were included in a unique category. In the “who suggested the patient to seek help” variable patient, family/partner, friends/workmates, health professionals (previous carer, nutritionist, psychologist, general practitioner) were included as categories. The time elapsing from the onset of the current ED episode to the access to the specialist ED unit was included as the outcome of the model.

Significance level was set at p <0.05. Analysis was performed using R, version 4.2 [37].

Results

Demographic characteristics of the sample

The final sample was composed of 409 individuals (383(94.3%) females, 26(5.7%) males) with a diagnosis of an ED (213(52.1%) with AN, 89(21.8%) with BN, 41(10%) with binge-ED, 66(16.1%) with other specified feeding or EDs). Mean age was 26.6 ± 11.2 years. Most of the participants were recruited in Italy (45%), were single (74%), on average social status (61%), Caucasian (86%), and with no history of previous care in a specialist ED unit (73%). The demographic and clinical characteristics of the study sample are reported in Table 1.

Table 1. Demographic and clinical characteristics of the sample.

Characteristics of the pathways to care

The main variables characterizing the pathways to care are reported in Table 2. The median time elapsing between the onset of symptoms of the current ED episode and the access to a specialist ED unit was 2 years (Min=0; Max=36).

Table 2. Characteristics of the pathways to care.

The average number of health professionals included in the specialist pathway for ED care was 2 (Min=0; Max=10); most of the participants (92%) did not directly access the specialist ED unit. The most frequent first health professionals on the pathway (Figure 1, point A) to specialist ED care were psychiatrists (26.2%), general practitioners (24.7%), and psychologists (17.1%). The psychiatrists were also the most prevalent (34.2%) health professionals who were seen before the access to the specialist ED unit (Figure 1, point X), followed by general practitioners (21.8%), psychologists (17.1%), nutritionists (8.5%) and hospital doctors (8.3%). The prevalence of general practitioners as the first health professional of the pathway (24.7%) was higher than that of general practitioners as the health professionals before the referral to the ED unit (21.8%) (p = 0.012).

The most common symptoms that promoted the referral to the first health professional of the pathway (Figure 1, point A) were eating-related symptoms (68.4%), followed by depressive (27.9%), anxiety (22.7%), and somatic (14.2%) symptoms. The most common symptoms that promoted being seen at the specialist ED unit (Figure 1, point E) were eating-related symptoms (87.7%), followed by depressive (43.8%), anxi (41.1%), and somatic (31.3%) symptoms. All these symptoms were more frequent at the referral to the specialist ED unit than at the referral to the first health professional of the pathway (all p <0.01).

The suggestion to seek care that promoted the access to the specialist pathway (Figure 1, point A) came from family (53.2%) or from patients themselves (39.1%). In the remaining cases (less than 10%) general practitioners, friends, partners, workmates or other health professionals suggested seeking care. The suggestion to seek care that promoted being seen at the specialist ED unit (Figure 1, point E) came from patients themselves (42%) or family (40.3%) in most of the cases: the involvement of the family was less frequent in comparison to that observed at the referral to the first health professional of the pathway (p <0.01). In the remaining cases, friends (4.7%) and partners (3.4%) were the most frequent categories in the suggestion to seek care at the ED unit.

Differences among countries

  • - Median time elapsing between the onset of symptoms of the current ED episode and the access to a specialist ED unit. Spain showed a delayed access of patients to ED units in comparison to all the other countries: these differences remained significant (p <0.001) after Bonferroni correction in the comparison with Poland, Italy, and UK. The same findings were observed in terms of the length of the pathway (namely, the months elapsing between access to the first health professional of the pathway and the access to the ED unit).

  • - Number of health professionals. The Czech Republic and Germany reported a higher (p <0.001) number of health professionals in the ED pathway to care than the other European countries.

  • - Health professionals who were seen before the access to the ED unit: general practitioners were less frequent in Italy (11.8%) than in France (35.8%), Spain (29.1%), and UK (68%). The prevalence of general practitioners was higher in UK (68%) than in the other countries. No differences among countries emerged for psychiatrists, while psychologists were more common in Germany (60%) than in other countries except Poland (20%) and Czech Republic (34.6%).

  • - First health professionals of the pathway to specialist ED care. General practitioners were less frequent in Italy (9.7%) and more frequent in UK (84%) than in other European countries (Figure 2). No differences among countries emerged for psychiatrists, while psychologists were more common in Germany (44%) than in the other countries (Figure 3).

  • - Symptoms that promoted the arrival at the specialist ED unit. Eating-related symptoms were less common in France (62.5%) than in Czech Republic (100%), Italy (91.4%), Spain (98.2%), and Germany (87.7%). General psychiatric symptoms were more common in Czech Republic (100%) than in Poland (60%), Italy (57.5%), UK (32%), and Germany (48%). In UK general psychiatric symptoms were less common than in France (80%) and Spain (80%). Somatic symptoms were more frequent in Czech Republic (88.5%) and less frequent in Germany (4%) and in UK (4%) than in other countries.

  • - Suggestion to seek care at the specialist ED unit. In Poland families and partners (88%) were more involved than in other European countries, while health professionals (4%) were less involved than in France (40.3%) and Spain (43.6%) and patients themselves sought care less frequently in Poland (24%) than in Spain (67.3%).

Figure 2. Color-coded map with a prevalence of general practitioners at the initiation of the eating disorder pathways to care in each participating European country.

Figure 3. Color-coded map with a prevalence of psychologists at the initiation of the eating disorder pathways to care in each participating European country.

Predictors of the length of the pathway to care

Longer time between the onset of symptoms of the current ED episode and access to a specialist ED unit was associated with treatment in a non-Italian center (HR 0.69, p = 0.01), higher age (HR 0.90, p <0.001), general psychiatric symptoms (HR 0.69, p = 0.01), low social class (HR 0.58, p = 0.008), suggestion to seek help by friends (HR 0.37, p = 0.019) or by health professionals (HR 0.49, p <0.001). The occurrence of somatic symptoms was associated with a shorter time from symptom onset to referral to the ED unit (HR 1.51, p = 0.004). Among non-Italian centers, Spain (HR 0.46, p <0.001), Czech Republic (HR 0.38, p <0.001), and Germany (HR 0.40, p = 0.002) were associated with delayed access to ED units, while UK had an earlier access (HR 1.91, p = 0.017).

Discussion

This is a multicenter study exploring the specialist pathway to ED care in European countries. Most patients reached a specialist ED unit after seeing two other health professionals. Psychiatrists, general practitioners, and psychologists were the most common health professionals who either started the specialist pathway to ED care or directly referred to the specialist ED unit. Eating, depressive, anxious, and somatic symptoms promoted the activation of a specialist pathway to ED care and were even more common at the referral to the ED unit. The suggestion to seek care at a specialized ED unit came most frequently from relatives and patients themselves. Pathway-related variables (namely, suggestion to seek care by friends or by health professionals and the occurrence of general psychiatric symptoms that promoted seeking care), higher age, and low social class predicted a delayed access to the ED unit.

The median time between ED symptoms onset and access to a specialist ED unit was 2 years. This is in line with findings from previous Italian pathways to ED care study [Reference Volpe, Monteleone, Ricca, Corsi, Favaro and Santonastaso29] and with international findings [Reference Austin, Flynn, Richards, Hodsoll, Duarte and Robinson10]. Most (92%) patients did not directly access a specialist ED unit and usually saw two other health professionals first. Only one out of four patients consulted a psychiatrist before seeking help at a specialist ED unit in spite of the central role that psychiatrists should play in the multidisciplinary treatment of EDs [Reference Monteleone, Fernandez‐Aranda and Voderholzer18]. Along with psychiatrists and psychologists, general practitioners were among the most frequent health professionals in the ED pathway. This corroborates the importance of non-mental health professionals in the early diagnosis of EDs and in their referral to specialist care [Reference Demmler, Brophy, Marchant, John and Tan23]. However, data from the literature reveal low rates of recognition for AN and BN by specialized medical professionals [Reference Tu, Tseng and Chang22, Reference Demmler, Brophy, Marchant, John and Tan23] and general practitioners [Reference Hudson, Hiripi, Pope and Kessler38Reference Higgins and Cahn40]. The involvement of general practitioners in the ED pathways was less frequent in Italy and more common in UK than in the other countries, while psychologists were most frequently involved in the pathway in Germany. These differences may reflect the local organization of health services, as in UK general practitioners are gate keepers of access to specialist care and most specialist ED services do not accept self-referrals.

The most frequent symptoms occurring when patients asked for help were eating-related, anxious, depressive, and somatic symptoms. This is in line with the high rate of comorbid affective disorders in individuals with EDs [Reference Spindler and Milos41] and with the high relevance of these symptoms in the ED psychopathology [Reference Monteleone and Cascino42Reference Lahey, Moore, Kaczkurkin and Zald44]. General psychiatric symptoms were associated with a delayed access to ED unit, whereas somatic symptoms reduced the time to specialist ED care. The presence of other than EDspecific symptoms may prompt people to seek help more broadly and this aligns with the high rate of medical hospitalizations [Reference Tu, Tseng and Chang22] and of central nervous system and gastrointestinal drugs prescriptions [Reference Demmler, Brophy, Marchant, John and Tan23] received during the two years before the ED diagnosis. Interestingly, a notable proportion of patients also sought care to feel less depressed or less overwhelmed by emotional problems [Reference Hepworth and Paxton45, Reference Gulliksen, Nordbø, Espeset, Skårderud and Holte46]. This may be because there is shame or fear of being stigmatized for the ED, or the anosognosia that is often reported associated with many aspects of the illness [Reference Regan, Cachelin and Minnick12]. Indeed, individuals with EDs often deny having a problem or are reluctant to disclose information about their eating behaviors [Reference Gulliksen, Nordbø, Espeset, Skårderud and Holte46, Reference Becker, Hadley Arrindell, Perloe, Fay and Striegel-Moore47].

The role of others in prompting individuals to seek care is nuanced. Prompting from friends and workmates was associated with a delayed access to ED units whilst prompting from family members and partners with a shortened access time. While previous studies have suggested a facilitator role for a wider group of social networks including friends and peers [Reference Ali, Farrer, Fassnacht, Gulliver, Bauer and Griffiths11, Reference Wacker48], we found a specific role of family members and partners, who seem to play a more active role in likely encouraging the individuals to seek help in the entire course of ED treatment [Reference Monteleone, Cascino, Salerno, Schmidt, Micali and Cardi49, Reference Treasure, Parker, Oyeleye and Harrison50].

Two further factors were associated with the length of the ED pathway. First, the country where the treatment was conducted: Spain, Czech Republic, and Germany were associated with delayed access to ED units in comparison to Italy, while UK had an earlier access. These findings are in line with the heightened length of the pathway in Spain and the higher number of health professionals included in the pathway in Germany and may reflect differences in the organization of healthcare systems among European countries [Reference Lane, GJM, Cook and Salmon51]. Second, belonging to a lower social class was a barrier to ED unit access: this may be due to the cost of treatment, or to the inaccurate stereotypes that are held about EDs that they are a problem only in the higher social classes [Reference Huryk, Drury and Loeb52].

The main strength of this study is the use of a standardized and quantitative method to assess the pathways to care for EDs, while previous research was mainly focused on personal barriers to treatment (i.e. denial of the illness, treatment perception or stigma problems), consisted of qualitative studies and used not-validated instruments [Reference Ali, Farrer, Fassnacht, Gulliver, Bauer and Griffiths11, Reference Regan, Cachelin and Minnick12]. Also, this is the first study to assess the strength of the relationships between the various treatment barriers and the delay in the access to specialist treatment. Future studies which focus on denial of illness, stigma towards EDs, severity and type of symptoms assessed through standardized tools, perception [Reference Swift, Mullins, Penix, Roth and Trusty53], and cost of treatment or time spent in waitlist might be relevant [Reference Griffiths, Rossell, Mitchison, Murray and Mond54].

Some limitations of the study need to be acknowledged. First, the recruiting centers did not cover the entire Europe zone, limiting generalizability. Second, some of the study findings may be at least partially affected by the organization of ED services and of the healthcare systems that can differ between European countries. Third, the patients were enrolled after the first wave of COVID-19 pandemic restrictions, and this may have affected the study results.

Clinical implications include increasing clinical competence of health care providers early in the care pathway, primarily general practitioners who were more frequently seen at the start of the specialist pathway than before the access to the ED unit. Brief screening measures that do not focus on ED symptoms alone but also on broader affective and somatic symptoms may be useful. Second, social media campaigns or school-based education programs [Reference Fusar‐Poli, Correll, Arango, Berk, Patel and Ioannidis55] may turn to family members as playing a key role in prompting care seeking and need to be informed about warning signs of EDs pathways to refer their loved one to specialist ED care. Third, governments and politicians should turn greater attention to patients belonging to lower social classes, whose access to ED units seems delayed, and health professionals need to be educated about the links between low socio-economical states and EDs. These suggestions may help to improve public health interventions. Indeed, a recent public intervention was not effective in shortening the duration of untreated illness and the time to the first contact with health care professionals, although the authors suggested that the failure was due to methodological limitations (i.e., the intervention did not achieve the target group, or the exposure period was not sufficient) [Reference Gumz, Weigel, Wegscheider, Romer and Löwe56]. Therefore, current findings point to the need for a more tailored target of public health interventions.

To conclude, this multicenter European study suggests health care system organization that general practitioners, psychiatrists and psychologists, and family members play an important role in the early access to specific ED treatment. Affective and somatic symptoms are important in care seeking. If confirmed by future studies, these findings may contribute to developing educational programs that may help to increase the awareness of EDs and reduce delays in accessing specialist ED services.

Supplementary material

The supplementary material for this article can be found at https://doi.org/10.1192/j.eurpsy.2023.23.

Acknowledgments

The authors thank Margaret Walker and Lara Grosso Sategna, working at the administrative office of the European Psychiatry Association, for their support in the production of the figures. US and JT receive salary support from the National Institute of Health Research (NIHR) Mental Health Biomedical Research Centre (BRC) at South London and Maudsley NHS Foundation Trust (SLaM) and King’s College London (KCL). US is also supported by an NIHR Senior Investigator Award. The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the NIHR, or the UK Department of Health. FF-A is supported by ISCIII (PI17/01167, PI20/132, and CIBERobn is an initiative from ISCIII) and FEDER, by Generalitat de Catalunya-CERCA program and by EU Grants (PRIME 847879, Eat2benice 728018, and COST 19115).

Author contributions

Alessio Maria Monteleone and Palmiero Monteleone designed the study. All authors contributed to acquisition, analysis, and interpretation of the findings. Alessio Maria Monteleone drafted the first version of the manuscript, all authors critically revised it for important intellectual content. All authors approve the final version of the work. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Financial support

This research received no specific grant from any funding agency, commercial or not-for-profit sectors

Competing interest

P.G. received during the last 5 years fees for presentations at congresses or participation in scientific boards from Angelini, Janssen, Lundbeck and Otsuka. F.F.A. received consultancy honoraria from Novo Nordisk, and he received several national and international Grants (FIS-ISCIII and EU-H2020). The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results. A.M.M. received honoraria as associate editor of the European Eating Disorders Review. The others authors declare none.

References

Eddy, KT, Tabri, N, Thomas, JJ, Murray, HB, Keshaviah, A, Hastings, E, et al. Recovery from anorexia nervosa and bulimia nervosa at 22-year follow-up. J Clin Psychiatry. 2017;78(2):184–9.CrossRefGoogle ScholarPubMed
Treasure, J, Hübel, C, Himmerich, H. The evolving epidemiology and differential etiopathogenesis of eating disorders: implications for prevention and treatment. World Psychiatry. 2022;21(1):147–8.CrossRefGoogle ScholarPubMed
Leichsenring, F, Steinert, C, Rabung, S, Ioannidis, JPA. The efficacy of psychotherapies and pharmacotherapies for mental disorders in adults: an umbrella review and meta-analytic evaluation of recent meta-analyses. World Psychiatry. 2022;21(1):133–45.CrossRefGoogle ScholarPubMed
Johnson, JG, Cohen, P, Kasen, S, Brook, JS. Eating disorders during adolescence and the risk for physical and mental disorders during early adulthood. Arch Gen Psychiatry. 2002;59(6):545–52.CrossRefGoogle ScholarPubMed
Fernández‐Aranda, F, Treasure, J, Paslakis, G, Agüera, Z, Giménez, M, Granero, R, et al. The impact of duration of illness on treatment nonresponse and drop‐out: exploring the relevance of enduring eating disorder concept. Eur Eat Disord Rev. 2021;29(3):499513.CrossRefGoogle ScholarPubMed
Andrés-Pepiñá, S, Plana, MT, Flamarique, I, Romero, S, Borràs, R, Julià, L, et al. Long-term outcome and psychiatric comorbidity of adolescent-onset anorexia nervosa. Clin Child Psychol Psychiatry. 2020;25(1):3344.CrossRefGoogle ScholarPubMed
Yárnoz‐Esquíroz, P, Lacasa, C, Riestra, M, Silva, C, Frühbeck, G. Clinical and financial implications of hospital malnutrition in Spain. Eur Eat Disord Rev. 2019;27(6):581602.CrossRefGoogle ScholarPubMed
National Guideline Alliance (UK). Eating disorders: recognition and treatment. London: National Institute for Health and Care Excellence (NICE); 2017.Google Scholar
Neubauer, K, Weigel, A, Daubmann, A, Wendt, H, Rossi, M, Löwe, B, et al. Paths to first treatment and duration of untreated illness in anorexia nervosa: are there differences according to age of onset? Eur Eat Disord Rev. 2014;22(4):292–8.CrossRefGoogle ScholarPubMed
Austin, A, Flynn, M, Richards, K, Hodsoll, J, Duarte, TA, Robinson, P, et al. Duration of untreated eating disorder and relationship to outcomes: a systematic review of the literature. Eur Eat Disord Rev. 2021;29:329–45.CrossRefGoogle ScholarPubMed
Ali, K, Farrer, L, Fassnacht, DB, Gulliver, A, Bauer, S, Griffiths, KM. Perceived barriers and facilitators towards help‐seeking for eating disorders: A systematic review. Int J Eat Disord. 2017;50(1):921.CrossRefGoogle ScholarPubMed
Regan, P, Cachelin, FM, Minnick, AM. Initial treatment seeking from professional health care providers for eating disorders: a review and synthesis of potential barriers to and facilitators of “first contact. Int J Eat Disord. 2017;50(3):190209.CrossRefGoogle ScholarPubMed
Godart, NT, Perdereau, F, Rein, Z, Berthoz, S, Wallier, J, Jeammet, P, et al. Comorbidity studies of eating disorders and mood disorders. Critical review of the literature. J Affect Disord. 2007;97(1–3):3749.CrossRefGoogle ScholarPubMed
Hopwood, CJ, Pincus, AL, Wright, AGC. A clinically useful model of psychopathology must account for interpersonal dynamics. World Psychiatry. 2023;22(1):152–4.CrossRefGoogle ScholarPubMed
Voderholzer, U, Haas, V, Correll, C, Körner, T. Medical management of eating disorders: an update. Curr Opin Psychiatry. 2020;33(6):542–53.CrossRefGoogle ScholarPubMed
Hoang, U, Goldacre, M, James, A. Mortality following hospital discharge with a diagnosis of eating disorder: national record linkage study, England, 2001–2009. Int J Eat Disord. 2014;47(5):507–15.CrossRefGoogle ScholarPubMed
Auger, N, Potter, BJ, Ukah, UV, Low, N, Israël, M, Steiger, H, et al. Anorexia nervosa and the long‐term risk of mortality in women. World Psychiatry. 2021;20(3):448.CrossRefGoogle ScholarPubMed
Monteleone, AM, Fernandez‐Aranda, F, Voderholzer, U. Evidence and perspectives in eating disorders: a paradigm for a multidisciplinary approach. World Psychiatry. 2019;18(3):369–70.CrossRefGoogle ScholarPubMed
McGorry, PD, Mei, C, Chanen, A, Hodges, C, Alvarez-Jimenez, M, Killackey, E. Designing and scaling up integrated youth mental health care. World Psychiatry. 2022;21(1):6176.CrossRefGoogle ScholarPubMed
Patton, GC, Coffey, C, Carlin, JB, Sanci, L, Sawyer, S. Prognosis of adolescent partial syndromes of eating disorder. Br J Psychiatry. 2008;192(4):294–9.CrossRefGoogle ScholarPubMed
Ogg, EC, Millar, HR, Pusztai, EE, Thom, AS. General practice consultation patterns preceding diagnosis of eating disorders. Int J Eat Disord. 1997;22(1):8993.3.0.CO;2-D>CrossRefGoogle ScholarPubMed
Tu, C, Tseng, MM, Chang, Y. Paths to the first‐time diagnoses of anorexia nervosa and bulimia nervosa in Taiwan. Int J Eat Disord. 2021;54(1):5968.CrossRefGoogle Scholar
Demmler, JC, Brophy, ST, Marchant, A, John, A, Tan, JOA. Shining the light on eating disorders, incidence, prognosis and profiling of patients in primary and secondary care: national data linkage study. Br J Psychiatry. 2020;216(2):105–12.CrossRefGoogle ScholarPubMed
Herpertz‐Dahlmann, B, Bonin, E, Dahmen, B. Can you find the right support for children, adolescents and young adults with anorexia nervosa: access to age‐appropriate care systems in various healthcare systems. Eur Eat Disord Rev. 2021;29(3):316–28.CrossRefGoogle Scholar
Rogler, LH, Cortes, DE. Help-seeking pathways: a unifying concept in mental health care. Am J Psychiatry. 1993;150:554–61.Google ScholarPubMed
Campbell, H, Hotchkiss, R, Bradshaw, N, Porteous, M. Integrated care pathways. BMJ. 1998;316(7125):133–7.CrossRefGoogle ScholarPubMed
Sartorius, N, Jablensky, A, Korten, A, Ernberg, G, Anker, M, Cooper, JE, et al. Early manifestations and first-contact incidence of schizophrenia in different cultures: a preliminary report on the initial evaluation phase of the WHO collaborative study on determinants of outcome of severe mental disorders. Psychol Med. 1986;16(4):909–28.CrossRefGoogle Scholar
Volpe, U, Mihai, A, Jordanova, V, Sartorius, N. The pathways to mental healthcare worldwide: a systematic review. Curr Opin Psychiatry. 2015;28(4):299306.CrossRefGoogle ScholarPubMed
Volpe, U, Monteleone, AM, Ricca, V, Corsi, E, Favaro, A, Santonastaso, P, et al. Pathways to specialist care for eating disorders: an Italian multicentre study. Eur Eat Disord Rev. 2019;27(3):274–82.CrossRefGoogle Scholar
Gater, R, Jordanova, V, Maric, N, Alikaj, V, Bajs, M, Cavic, T, et al. Pathways to psychiatric care in Eastern Europe. Br J Psychiatry. 2005;186(6):529–35.CrossRefGoogle ScholarPubMed
Gater, R, Sousa, DBAE, Barrientos, G, Caraveo, J, Chandrashekar, CR, Dhadphale, M, et al. The pathways to psychiatric care: a cross-cultural study. Psychol Med. 1991;21(3):761–74.CrossRefGoogle Scholar
Monteleone, AM, Cascino, G, Barone, E, Carfagno, M, Monteleone, P. COVID-19 pandemic and eating disorders: what can we learn about psychopathology and treatment? A systematic review. Curr Psychiatry Rep. 2021;23:115.CrossRefGoogle ScholarPubMed
First, MB, Gaebel, W, Maj, M, Stein, DJ, Kogan, CS, Saunders, JB, et al. An organization‐and category‐level comparison of diagnostic requirements for mental disorders in ICD‐11 and DSM‐5. World Psychiatry. 2021;20(1):3451.CrossRefGoogle ScholarPubMed
First, MB. SCID-5-CV : structured clinical interview for DSM-5 disorders, clinician version. Arlington, VA: American Psychiatric Association; 2016, p. 95.Google Scholar
Bradburn, MJ, Clark, TG, Love, SB, Altman, DG. Survival analysis part III: multivariate data analysis–choosing a model and assessing its adequacy and fit. Br J Cancer. 2003;89(4):605–11.CrossRefGoogle Scholar
Bradburn, MJ, Clark, TG, Love, SB, Altman, DG. Survival analysis part II: multivariate data analysis–an introduction to concepts and methods. Br J Cancer. 2003;89(3):431–6.CrossRefGoogle ScholarPubMed
R Core Team. R: a language and environment for statistical computing. Vienna, Austria: R Foundation for Statistical Computing; 2016.Google Scholar
Hudson, JI, Hiripi, E, Pope, HG, Kessler, RC. The prevalence and correlates of eating disorders in the national comorbidity survey replication. Biol Psychiatry. 2007;61(3):348–58.CrossRefGoogle ScholarPubMed
Godart, NT, Legleye, S, Huas, C, Coté, SM, Choquet, M, Falissard, B, et al. Epidemiology of anorexia nervosa in a French community-based sample of 39,542 adolescents. Open J. Epidemiol. 2013;3:31847.CrossRefGoogle Scholar
Higgins, A, Cahn, S. Detection of anorexia nervosa in primary care. Eat Disord. 2018;26(3):213–28.CrossRefGoogle ScholarPubMed
Spindler, A, Milos, G. Links between eating disorder symptom severity and psychiatric comorbidity. Eat Behav. 2007;8(3):364–73.CrossRefGoogle ScholarPubMed
Monteleone, AM, Cascino, G. A systematic review of network analysis studies in eating disorders: is time to broaden the core psychopathology to non specific symptoms. Eur Eat Disord Rev. 2021;29(4):531–47.CrossRefGoogle ScholarPubMed
Watson, D, Levin-Aspenson, HF, Waszczuk, MA, Conway, CC, Dalgleish, T, Dretsch, MN, et al. Validity and utility of hierarchical taxonomy of psychopathology (HiTOP): III. Emotional dysfunction superspectrum. World Psychiatry. 2022;21(1):2654.CrossRefGoogle ScholarPubMed
Lahey, BB, Moore, TM, Kaczkurkin, AN, Zald, DH. Hierarchical models of psychopathology: empirical support, implications, and remaining issues. World Psychiatry. 2021;20(1):5763.CrossRefGoogle ScholarPubMed
Hepworth, N, Paxton, SJ. Pathways to help‐seeking in bulimia nervosa and binge eating problems: a concept mapping approach. Int J Eat Disord. 2007;40(6):493504.CrossRefGoogle ScholarPubMed
Gulliksen, KS, Nordbø, RHS, Espeset, EMS, Skårderud, F, Holte, A. The process of help-seeking in anorexia nervosa: patients’ perspective of first contact with health services. Eat Disord. 2015;23(3):206–22.CrossRefGoogle ScholarPubMed
Becker, AE, Hadley Arrindell, A, Perloe, A, Fay, K, Striegel-Moore, RH A qualitative study of perceived social barriers to care for eating disorders: perspectives from ethnically diverse health care consumers. Int J Eat Disord. 2010;43(7):633.CrossRefGoogle ScholarPubMed
Wacker, EC. Barriers and facilitators to seeking treatment for subclinical eating disorders: the importance of supportive relationships. J Fam Psychother. 2018;29(4):292317.CrossRefGoogle Scholar
Monteleone, AM, Cascino, G, Salerno, L, Schmidt, U, Micali, N, Cardi, V, et al. A network analysis in adolescent anorexia nervosa exploring the connection between both patient and carer reactions and outcome. Eur Eat Disord Rev. 2023;31:6575.CrossRefGoogle ScholarPubMed
Treasure, J, Parker, S, Oyeleye, O, Harrison, A. The value of including families in the treatment of anorexia nervosa. Eur Eat Disord Rev. 2021;29(3):393401.CrossRefGoogle ScholarPubMed
Lane, BR, GJM, Read, Cook, L, Salmon, PM. A systems thinking perspective on the barriers to treatment access for people with eating disorders. Int J Eat Disord. 2020;53(2):174–9.CrossRefGoogle ScholarPubMed
Huryk, KM, Drury, CR, Loeb, KL. Diseases of affluence? A systematic review of the literature on socioeconomic diversity in eating disorders. Eat Behav. 2021;43:101548.CrossRefGoogle ScholarPubMed
Swift, JK, Mullins, RH, Penix, EA, Roth, KL, Trusty, WT. The importance of listening to patient preferences when making mental health care decisions. World Psychiatry. 2021;20(3):316.CrossRefGoogle Scholar
Griffiths, S, Rossell, SL, Mitchison, D, Murray, SB, Mond, JM. Pathways into treatment for eating disorders: a quantitative examination of treatment barriers and treatment attitudes. Eat Disord. 2018;26(6):556–74.CrossRefGoogle ScholarPubMed
Fusar‐Poli, P, Correll, CU, Arango, C, Berk, M, Patel, V, Ioannidis, JPA. Preventive psychiatry: a blueprint for improving the mental health of young people. World Psychiatry. 2021;20(2):200–21.CrossRefGoogle ScholarPubMed
Gumz, A, Weigel, A, Wegscheider, K, Romer, G, Löwe, B. The psychenet public health intervention for anorexia nervosa: a pre–post-evaluation study in a female patient sample. Prim Health Care Res Dev. 2018;19(1):4252.CrossRefGoogle Scholar
Figure 0

Figure 1. Diagram of the general pathway to care for participants. Point “x” indicates one of the health professionals who were seen before the access to the ED unit.

Figure 1

Table 1. Demographic and clinical characteristics of the sample.

Figure 2

Table 2. Characteristics of the pathways to care.

Figure 3

Figure 2. Color-coded map with a prevalence of general practitioners at the initiation of the eating disorder pathways to care in each participating European country.

Figure 4

Figure 3. Color-coded map with a prevalence of psychologists at the initiation of the eating disorder pathways to care in each participating European country.

Supplementary material: File

Monteleone et al. supplementary material

Monteleone et al. supplementary material

Download Monteleone et al. supplementary material(File)
File 35 KB
Submit a response

Comments

No Comments have been published for this article.