Silent Crises, Systemic Gaps: A Critical Review of Eating Disorder Screening and Diagnostic Tools in China

Chen Lin^1,2*, Ang Mei Foong¹ and Mingli Yang^2
*Correspondence: Chen Lin, Faculty of Human Ecology, University Putra Malaysia, Serdang Selangor, Malaysia, Postal Address: Jalan Universiti 1, 43400 Serdang, Selangor, Malaysia, Email:

Keywords

Eating Disorder, Screening, Diagnostic, Instruments, China

Introduction

Eating disorders are common conditions that have gained increasing attention over the last two decades (Qian et al., 2013). Globally, the prevalence is estimated at 1% without Chinese data due to sufficient research (Qian et al., 2013). Since 2013, however, there has been an unexpected increase in this condition in China. By 2021, the number of outpatients seeking treatment for ED at the Shanghai Mental Health Centre (SMHC) had tripled compared to the previous five years (Chen et al., 2021), leading to a severe burden on the current mental healthcare system. Despite the rising trend, early-stage screening for EDs remains inadequate. On average, individuals take seven to ten years to seek professional help (Maher et al., 2022). This delay is largely attributed to the absence of standardized screening tools and established screening practices in China. The consequences of delayed diagnosis are severe: as symptoms worsen, treatment becomes increasingly difficult, leading to reduced quality of life and impaired social functions. Given these challenges, there is a critical need for improved early detection strategies, especially efficient screening instruments, to mitigate the long-term impact of EDs on individuals and the healthcare system.

Prevalence of Eating Disorders in China

Eating disorders (EDs) are classified as severe mental illnesses by the DSM-V, 2013. They are defined as a pattern of eating or eating-related behaviour that alters food intake or absorption and significantly impairs mental or physical functioning. A nationwide survey conducted in 2012 found that, out of all mental illnesses, EDs account for just 0.1% of cases in China. Over 1.5 million people were expected to be affected, given China's sizable population. However, the actual numbers of EDs are underestimated. Because the figure of 0.1% was only calculated for EDs with AN and BN. According to studies, there are four categories of ED groups: ED (AN, BN, BED), ED (AN, BN), ED (any), and ED (unknown). In a systematic review of the investigation of the prevalence of EDs in the general population, the statistics from the Chinese population were severely absent due to large-scale mental epidemiology studies not screening for eating disorders in China (Qian et al., 2013). Since 2013, just 15 studies have been included in the last 30 years in China (Qian et al., 2022). The reported prevalence rate of EDs varies, they ranged from 0.1% in 2012 to 3.8 % in 2013 globally (Qian et al., 2013). In 2021, Qian et al., the same group of researchers, updated the statistics of ED prevalence in China and the features of distribution at various times, areas, and sexes so that the diagnostic criteria targeted the general population. The lifetime prevalence of EDs was 3.6%, which is 0.2% lower than that in 2013 (3.8%), according to the same researchers on the same topic, this was explained by them because the Chinese data was included in the account by 2021 (Qian et al., 2022). Among them, college students aged 20-24 are typical in this illness, the prevalence was up to 43.2% (Yeh et al., 2009).

However, insufficient attention has been given to early-stage screening for eating disorders (EDs), largely due to the lack of effective screening tools, little eating disorder training healthcare professionals, and obstacles to seeking assistance, the low sensitivity of existing tools, and the outdated screening criteria that have not been revised in alignment with updates in the DSM-V Diagnostic Manual. These issues have led researchers to suspect that the actual prevalence rates of EDs may be significantly higher than currently reported.

Importance of Screening and Diagnosis for Eating Disorders

Development of an ED is a gradual process of onset and progression, from mild to severe, from easily curable to a process in which death occurs, from the early signs to the eventual diagnosis (Bryant et al., 2022). The diagnosis of ED is experiencing screening in the initial stage, assessment, and diagnosis (Berg et al., 2012). Screening for early detection is critical cause early identification and intervention could slow the growth of eating disorders and improve their outcomes and prognosis (Rowe, 2017). Firstly, the beginning symptoms of ED are acute and easy to fully recover (50%) (Smink et al., 2013), but if the acute symptoms are not intervened in the early stages, over time, the eating problem not only turns into a chronic condition with regularity and periodicity but can even cause death in some extreme cases (Cheng et al., 2018). Secondly, according to the International Classification of Disease in 2018, high mortality rates are a key feature of ED, which shows the highest (27.4%) of any other mental health disease. Therefore, given the prognostic outcomes of full recovery and the high mortality rate, early identification and differential diagnosis is important for patients with ED. Otherwise, the severe consequences will emerge. However, research into improvement detection and clinician diagnostic skills is extremely limited (Bryant et al., 2022).

Barriers to Screening and Diagnosis of Eating Disorder

Eating disorders, unlike other psychiatric illnesses, may be healed. Around half of the people completely recover (Smink et al., 2013), whereas 20-30% have a chronic course (Eddy et al., 2017). It is important to detect early as data strongly supports that early detection and intervention offer a better long-term prognosis. Eating disorder identification rates are consistently low, treatment needs are high, and the associated disease burden is high due to a lack of screening and diagnosis practices, inadequate training for healthcare professionals, and barriers to seeking help (Bryant et al., 2022).

One of the obvious barriers is limited screening practices, tools, and procedures. A new systematic review shows research into detection and screening (only 38% relating to screening) is extremely limited in both high-risk (Worsfold & Sheffield, 2018) and general populations (Bryant et al., 2022) compared to 62% to assessment diagnosis. Additionally, these reports are mainly from the U.S., Australia, and European countries instead of China. Furthermore, experts have questioned the feasibility of existing screening procedures to detect all DSM-5 EDs, implying that potential cases may be over- or under-diagnosed (Maguen et al., 2018). The potential harm to the target population caused by currently available screening tools cannot be ignored. The potential harm of poor screening instruments, for example, SCOFF with low sensitivity and specificity, has false-positive screening results that lead to unnecessary referrals or labelling of the population (Feltner et al., 2022), can also lead to economic burden and time-consuming.

Even though ED screening tools are used to detect at both individual and population levels, the effectiveness of screening is not optimistic due to personal reluctance to seek care (unsure how serious their needs or time-poor) (Lipson et al., 2017), negative attitudes towards seeking- help, low motivation to change which is another important barrier of screening EDs. According to research, university students are a typical demographic that develops ED, and screening in these samples shows a high incidence. There was one research conducted at a university that showed nearly 60% of students screened were identified as being at high risk of ED onset or having an ED (Fitzsimmons-Craft, Balantekin, et al., 2019), but only small gains in help-seeking in studies that followed up post-screen (Bryant et al., 2022). Likewise, around 20% of college students who test positive for an eating issue get treatment, according to research (Eisenberg et al., 2011), and only 17% of college students are accepted to be referred to an ED clinic.

Low rates of ED detection were also caused by a lack of recognition, denial, and failure to perceive the severity of illness (Feltner et al., 2022). Eating disorders do not have the same obvious physical signs as other mental illnesses, most people with bulimia have no signs of obesity. They make their weight appear normal through excessive exercise or the use of diuretics and laxatives, and they engage in binge eating behaviors covertly where no one can see them, which makes eating disorder patients have more denial problems than other mental illnesses, according to DSM-V. Previous screening scales have often had invasive problems, and the screening results have tended to be negative. Research has also shown that self-recognition is linked to seeking professional help (Eisenberg et al., 2011).

Post-screen is also an important barrier that influences the effectiveness of ED detection initially, suggestions for online screening efforts should address strategies to boost motivation for help-seeking (seeking assistance), treatment-uptake, and pursuing change (Bryant et al., 2022). The last reason causing low rates of ED screening at an individual and population level is the lack of early identification in primary care, which means opportunities to intervene early are frequently missed.

Types of ED Screening and Diagnosis Instruments

Eating disorders are complicated mental health conditions. For eating disorders to be appropriately and promptly treated, accurate diagnosis and identification are essential. To identify and evaluate eating disorders early on, several screening and diagnostic tools have been developed. Screening is a “brief assessment procedure designed to identify who should receive more intensive diagnosis or assessment” (Meisels & Provence, 1989). As per the World Health Organization (2020), screening serves the objective of identifying individuals who are more susceptible to a particular illness so that intervention or treatment can be provided to minimize harm. Eating disorder screening is the first step in the process of gathering information about individuals suspected of this mental illness (Bryant et al., 2022). Assessment and diagnosis, on the other hand, identify issues precisely to enable high-quality care (LeBlond, 2015). Diagnosis is the same evaluation process as assessment; the purpose is to determine appropriate treatment options and measure treatment progress (LeBlond, 2015). ED diagnosis Internationally has interview-type scales and self-administered scales (LeÈ›i et al., 2020).

Screening Instrument

The screening test can be conducted through different methods, including university and online screening processes, primary care and specialist healthcare settings, mental health and specialist psychiatric services, and general hospitals [2]. Various screening tools are employed to identify individuals at high risk for eating disorders. Commonly used instruments include the Sick, Control, One, Fat, and Food (SCOFF) questionnaire developed in 1999, the Screen for Disordered Eating (SDE) introduced in 2018, and the Eating Disorder Screen (EDS) from 2003 (Cotton et al., 2003; Maguen et al., 2018).

Morgan and colleagues' 5-item Sick, Control, One, Fat and Food (SCOFF) questionnaire was introduced in 1999. The five -items (related to self-control, weight loss, body image, and the role of food) are addressed to patients in primary care units by clinicians to facilitate if there is a suspicion of a screening of women at risk for AN and BN. Similarly, Screen for Disordered Eating (SDE) employs 5-item questions to determine the status of the eating problem (Maguen et al., 2018). SDE is the first primary care ED screener for all categories of DSM-5 eating disorders to identify patients who may need additional treatment. In the clinical setting, both SCOFF and SED are frequently used. The key difference between them is that SCOFF is only used for screening women, and SDE is used for both genders. SCOFF is less accurate than the SED, as its classifying criteria for ED are based on the DSM-4, which focuses only on differentiating between anorexia and bulimia. In contrast, SDE, developed in the last 5 years, provides a more detailed classification of sub-ED than SCOFF. Additionally, SCOFF had a poor sensitivity of 84% and specificity of 80% in detecting adults, with even lower accuracy among adolescents (Feltner et al., 2022).

Eating Disorder Screen (EDS) is a five-question related to eating behaviors, patients’ family, and personal history of EDs tool, which used both in university and primary care settings, as well as to determine if a more extensive evaluation of a probable eating problem is necessary (Cotton et al., 2003). Similarly, an Eating Disorder Screen for Primary Care (EDS-PC) is a four-item indicate AN or BN (Maguen et al., 2018). The disadvantage of both tools is that applicability for more diverse populations is unknown (Cotton et al., 2003; Maguen et al., 2018). When comparing existing screening tools, studies have shown that the ESP has lower invasiveness compared to SCOFF (Kagan & Melrose, 2003). The sensitivity and specificity of EDS-PC are 100% and 71%, respectively.

The Eating Attitudes Test (EAT-26) is a self-reported screening tool that measures symptoms and concerns of ED risk. EAT-26 can be used both in non-clinic and clinic settings (Garner et al., 1983). It is used to determine, according to several dimensions of body image, body weight, binge eating behaviour, and self-controlled eating attitudes, if an individual should be referred to a specialist for evaluation for an ED, intended mainly for adolescents and adults. The EAT-26 is relatively simple and takes 5-10 minutes to complete.

A higher EAT-26 score doesn’t mean severe symptoms in ED, but further clinical evaluation is needed.

Assessment criteria are available in Hong Kong, but there is a lack of information in mainland China because it may not be equally valid across different cultures, as eating norms can vary significantly (Papini et al., 2022).

The Eating Disorder Diagnostic Scale (EDDS) is a 22-item self-report questionnaire created in 1994 to evaluate the symptomatology of AN, BN, and BED in line with the DSM-IV diagnostic criteria (Stice et al., 2000). It is designed for adolescents and adults of both genders, from ages 13 to 65 years old. It is mainly used to differentiate binge eating, compensatory behaviors, and weight concerns (Stice et al., 2000). The EDDS has the benefit of being simple and quick to complete, as well as being adaptable in that it could be used as a screened tool for assessment, a diagnostic tool to supplement eating disorder diagnostic criteria, and ultimately, for treatment monitoring and evaluation (Stice et al., 2000). In at least one study (Lee et al., 2007), one of the shortcomings of EDDS was shown to produce a large number of "false positives," indicating a lack of specificity. It can be used in both clinical and non-clinical population.

The Questionnaire for the Diagnosis of Eating Disorders (Q-EDD) is a self-report measure designed to capture the diagnostic criteria for eating disorders included in the DSM-IV (Mintz et al., 1997). It is a quick and efficient way of screening and aiding in making differential diagnoses, making it practical for both clinical and research settings. However, since the DSM-5 was updated in 2013, the Q-EDD is based on DSM-IV criteria. This means the questionnaire may not fully capture the current diagnostic criteria.

The Healthy Body Image (HBI) Program is an online screening and intervention program used to identify individuals’ risk for EDs, categorizing them as low-risk, high-risk, or already having an ED. Based on the result, it provides tailored support, including evidence-based digital intervention like Student Bodies-EDs, SB-ED, online guided self-help cognitive-behavioral therapy, or referral to the clinics for further diagnosis, depending on the individual’s risk level or clinical needs (Fitzsimmons-Craft, Eichen, et al., 2019; Jones et al., 2014). The screening instrument used by this program is the Stanford-Washington University Eating Disorder Screen (SWED). The HBI has some limitations, and it was difficult to draw definitive conclusions about the long-term impact of the HBI program for males (Svantorp-Tveiten et al., 2021). Furthermore, the effects (effect sizes) were modest, raising questions about the practical or clinical significance of the HBI program. Due to the format of the program (presence of teachers) sensitive information like body dissatisfaction was underreported (Sundgot-Borgen et al., 2018).

Last but not least, the Stanford-Washington University Eating Disorder Screen (SWED) is a quick and comprehensive screening test for ED behaviours, weight and shape, and impairment (Graham et al., 2019). The screening tool was designed according to DSM-5 ED disorder diagnostic categories and to classify individuals into four types, which are high or low risk, sub or full syndrome of eating disorders (Graham et al., 2019). The SWED includes 11 questions, items are adapted from Eating Disorder Examination-Questionnaire, EDE-Q (Fairburn & Beglin, 1994), Eating Disorder Diagnostic Scale, EDDS (Stice et al., 2000). Weight Concerns Scale, WCS (Killen et al., 1994) The response of the questionnaire is binary, with yes or no answer choices to determine if participants participated in eating disorder behaviours. Responses are used to categorize individuals into one of seven possible DSM-5 diagnoses or two risk categories: 1) AN; 2) BN; 3) BED; 4) subclinical bulimia nervosa (sub-BN); 5) subclinical binge eating disorder (sub-BED); 6) unspecified feeding or eating disorder (UFED); 7) avoidant/restrictive food intake disorder (ARFID); 8) high risk for an eating disorder; or 9) not at risk for an eating disorder (Graham et al., 2019). The frequency of abnormal eating behaviour is at least 2 times a week in a month or 1 time a week in 2 months (Graham et al., 2019) (Table 1).

Diagnosis Instrument

Early differential diagnosis of eating disorders requires simple and accurate differential tools. Self-administered scales and interview-type scales are the two methods for diagnosis that are currently used internationally (Leți et al., 2020). The interview scales are primarily designed for diagnosis in children and for paediatricians. The self-administered scales are designed for adults. The main diagnosis ED instruments include the Eating Attitudes Test (EAT-26), Eating Disorder Inventory (EDI), Eating Disorder Inventory -3 (EDI-3), and Eating Disorder Examination (EDE).

Eating Disorder Examination (EDE) is the interview questionnaire (Fairburn et al., 2008). The duration of the interview EDE is 45 minutes to 1 hour and 15 minutes (Fairburn & Beglin, 1994). For Investigator-based interviews, interviewees need to be trained before the interview to ensure that they can correctly understand the questions asked and the purpose of the interview (Dalle Grave et al., 2014). However, a key limitation is the shortage of primary care resources for ED; possible reasons could be a lack of funding, professional trainers, and time. As a result, delivering -quality interviews impacts the accuracy of the assessment.

The Eating Disorder Examination Questionnaire (EDE-Q) is adapted from the EDE interview, a 28-item self-report questionnaire designed for ages 14 and over for both genders. It measures the range and severity of symptoms associated with an ED diagnosis using subscales and total scores for restraint, eating concerns, shape concerns, and weight concerns (Jennings & Phillips, 2017). EDE-Q has four subscales, including restriction, eating concern, shape concern, and weight concern, and was developed based on the DSM-III-R diagnostic scale criteria. The advantage of EDE-Q is that it is a short and inexpensive questionnaire used for research and therapeutic reasons. It generally takes 10 minutes to complete the scale, and the latest version translated into Chinese is EDE 6.0, but reliability information has not been published. The weakness of EDE-Q is that this is a self-report assessment, and people who answer the questions may not grasp the terminology of ED symptoms, and EDE-Q does not detect anorexia nervosa (Jennings & Phillips, 2017). It also lacks measurement consistency across some ethnic groups, which affects the accuracy of its results (Kelly et al., 2017). The reported Cronbach’s alpha ranged from .74 to .93 for both genders (Rose et al., 2013).

Morgan-Russell Outcome Scale is a multilevel assessment tool for clinical outcomes in patients with anorexia nervosa (Morgan & Hayward, 1988). It was introduced by Morgan and Russell in 1975. This scale covers various factors, including food intake, menstrual status, mental status, psychosexual status, and psychosocial status respectively (Morgan & Hayward, 1988). The scale is easy to use; the raters do not require special training. It can be used in large-scale epidemiological surveys. While widely used, the Morgan-Russell scale has limitations, particularly when applied to younger populations. For example, those items related to sexual relationships and financial independence are not relevant to children and adolescents (Nagamitsu et al., 2019). However, the Morgen-Russell scale is an important tool in ED clinical diagnosis, it provides a valuable framework for evaluating long-term outcomes.

Yale-Brown-Cornell Eating Disorder Scale (YBC-EDS) is a semi-deterministic interview questionnaire; it was divided into three parts (Mazure et al., 1994). The first part consists of a 65-item symptom check and 19 questions that address the patient's categorization of 18 compulsive actions and preoccupations related to food, eating behavior, exercise, weight, and body size. The second part consists of 10 entries and 20 questions evaluating the interference and impact of these symptoms on the patient, quantitatively rating their severity and the patient's motivation to change. Some of the entries in the third part apply to the second interview and beyond, including assessment of the severity of the symptoms, treatment efficacy, and determination of the reliability of the chat sheet assessment (Mazure et al., 1994). The entire scale takes 15-20 minutes to complete and also provides a good assessment of the severity of the patient's symptoms, but the scale needs to be completed by a physician with clinical experience in the specialty.

The Eating Disorder Inventory (EDI) is a 64-item self-report questionnaire developed to examine psychological and Behavioral characteristics prevalent in anorexia nervosa and bulimia nervosa. It is frequently used in clinical settings for diagnosing EDs (Garner et al., 1983). The EDI-I is divided into eight subscales: drive for thinness, BN, body dissatisfaction, ineffectiveness, perfectionism, interpersonal distrust, interoceptive awareness, and maturity worries (Garner et al., 1983). The EDI was also given to groups of normal-weight bulimic women, obese women, normal-weight but formerly obese women, and a male comparison group. The disparities between groups are recorded, and the potential value of the EDI is examined (Garner et al., 1983). The EDI-2 consistently distinguishes between patients and nonclinical controls, and to a lesser extent across patient groups (Garner, 1991). Both the original (EDI-1) and the second (EDI-2) versions have been used internationally to screen for eating disorders in the general population, to monitor treatment impact and outcome, and in regular clinician evaluations (Clausen et al., 2011). The EDI-3 is an extension and upgrade on previous versions of the EDI introduced in 2004. It is suitable for those aged 13 to 53 years old and may be administered in as little as 20 minutes. The EDI-3 has three eating disorder-specific questions and nine general psychological measures that are related to eating disorders. The inventory generates six composite scores: likelihood of developing an eating disorder, ineffectiveness, interpersonal issues, emotional problems, over control, and overall psychological maladjustment (Clausen et al., 2011). The EDI-3 is translated into 16 languages, including Chinese.

In summary, the current structured or semi-structured interview scales and questionnaires used to screen or diagnose ED have certain shortcomings. The SCOFF questions were shown to be less sensitive than those used in the origination research, and they were unable to securely rule out an eating disorder diagnosis among university students. The ESP questions were not different from the SCOFF questions when ruling out an eating problem, but they were better at ruling one out, according to the study (Cotton et al., 2003). Some questionnaires are too old regarding diagnostic criteria, or even if they are available in Chinese, they have not been tested for local validity.

Conclusion

In summary, the incidence of EDs in China is increasing year by year. AN has the highest mortality rate of all psychiatric disorders. Often, individuals only take action when there are severe Behavioral or evident emotional problems, missing the optimal treatment window and exacerbating the severity of the issues. Therefore, early detection, diagnosis, and prevention are important for such a high mortality rate. To reduce the effect of EDs on physical, psychological, and economic outcomes, it is critical to identify screening and diagnosis stages in such populations and individuals in society, and at the primary care level, a review of screening and diagnosis tools may be beneficial in identifying at-risk individuals. As a result, it is possible to begin medical care before a patient meets all of the diagnostic criteria for a specific eating disorder, slowing symptom development and improving mortality.

Despite being widely used, the current questionnaires and semi-structured interviews used for screening and diagnosis scales have certain shortcomings as well as strengths. Some questionnaires are too old regarding diagnostic criteria, or even if they are available in Chinese, they have not been tested for local validity. Therefore, more comprehensive and non-invasive instruments in the early development of EDs are needed in the Chinese context. This is particularly important due to the specific psychological characteristics of eating disorders, such as sensitivity and secrecy (Kagan & Melrose, 2003). Their defensive mechanisms and perceived stigma contribute to a decrease in the accuracy of screening. Furthermore, Chinese clinic psychiatrists continue to use ICD-10 diagnostic criteria, released in 1990, rather than the updated ICD-11, which aligns more closely with the DSM-5 issued in 2013. This updated version has not been applied in diagnosis and research in China, putting the country significantly behind European and American countries (Rowe, 2017). Additionally, because individuals with EDs often hide or deny their illness, the lack of up-to-date diagnostic tools can result in many people missing the optical period for treatment. Therefore, China's ED classification and diagnostic criteria need to be in line with international standards as soon as possible (Chen et al., 2020).

This study highlights the potential benefits of involving primary healthcare providers, mental illness units, psychological departments, and university educators in the early detection of EDs. These stakeholders should prioritize systematic screening for ED risk and implement early interventions for vulnerable individuals. Timely actions, such as referrals to specialized professionals for further evaluation, are crucial. Additionally, it will benefit individuals at risk of developing an eating disorder but who may be unaware of their vulnerability. Through a systematic screening process, early awareness can be fostered, encouraging help-seeking behaviour and ultimately preventing the adverse consequences of EDs. Implementing these measures can help mitigate the long-term impacts of EDs, promote better health outcomes for individuals, and alleviate the burden of China’s healthcare system. Furthermore, these efforts may contribute to a reduction in the overall prevalence of EDs within the population.

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