Decreasing the duration of untreated illness for individuals with anorexia nervosa: study protocol of the evaluation of a systemic public health intervention at community level

Anorexia Nervosa (AN) is an eating disorder (ED) mainly characterized by a refusal to maintain body weight, an intense fear of weight gain as well as a distortion of body perception. It can have serious adverse consequences on physical as well as psychological health. Common concomitant effects include cardiac arrhythmias, electrolyte imbalances, renal insufficiency, osteoporosis as well as severe infections [1]. In addition, many patients with AN suffer from comorbid psychiatric disorders (e.g. [2]-[4]) with anxiety and affective disorders being most frequent [5],[6].

Compared with other mental disorders, AN occurs relatively seldom with an average prevalence estimated at 0.3% [7]. However, with 0 to 22% the morbidity and mortality rates are among the highest of any mental disease [8],[9]. In a 21-year follow-up study 14% of the patients died from reasons directly related to AN [10]. Moreover, in spite of low prevalence rates, AN generates high costs for the health care systems - almost equivalent to those reported for schizophrenia [11].

Due to the various adverse consequences for AN-affected individuals and the healthcare system an early and effective treatment is indispensable. There is evidence for the effectiveness of treatment methods for AN [12]. Nevertheless, estimates show that only half of the AN cases are detected in primary care settings [13] and only one third of the cases detected receive treatment [7]. There can be different reasons for AN- patients to remain untreated. Practitioners might not discover the disorder or patients might decide against a recommended treatment due to the ego-syntonic nature of AN [14].

Even after a successful treatment initiation, there are several factors that may have a negative impact on the course of the disease. The most important predictors of a poor outcome are a low Body-Mass-Index (BMI) as well as severe psychological and social problems [10]. Some studies report that a higher BMI at treatment initiation is the strongest predictor of a successful course [15],[16]. Therefore, treatment needs to be initiated before weight loss becomes too severe and protracted [17]. This emphasizes another relevant outcome predictor: the Duration of Untreated Illness (DUI). The DUI describes the time between the onset of an illness and the initiation of treatment. There is evidence for a modest association between DUI and outcome in schizophrenia [18],[19] and some indication of an association in mood and anxiety disorders [20],[21]. The DUI may also play an important role in AN- patients (e.g. [22],[23]). It can be concluded that treatment is more likely to be successful when patients have suffered from AN for a shorter period of time [24]. A review containing six studies from different Western countries found the average DUI to be 1,78 years in patients with AN [25]. This is of great clinical concern as a long duration of AN may be associated with severe complications such as increased mortality [26].

So far, little research has been conducted on factors predicting the DUI in AN. Ackard and colleagues [27] reported the duration of illness to be longer in middle-aged (≥40 years) than in younger women (18-39 years). Healthcare system related aspects influencing the time between symptom onset and treatment utilization are sufficient information about diagnostic and treatment options, availability as well as networking of different care givers [28],[29]. Especially general practitioners and pediatricians need to have competence regarding diagnostic of and treatment for EDs to facilitate and accelerate referral into specialist care [30].

There are several interventions and resources available to effectively treat AN [12] which are currently not used to the full extent [7],[13]. The reasons for the existing potentials not being exploited fully may be found in individuals as well as systemic structures. Thus, interventions aiming to take this complexity into account have to be multi-faceted as well. In the area of depressions, it has been shown that systemic interventions are able to positively intervene in existing structures. With its four-level intervention program for improving care of patients with depression the “Regensburg Alliance against Depression” succeeded in significantly decreasing suicide rates in Regensburg [31].

This study is a pre-post study that examines the evaluation of a systemic public health intervention for EDs. The systemic intervention contains the establishment of a network of health care professionals within the area of EDs, the publication of a treatment guide for patients, relatives and therapists, the distribution of information concerning EDs by short-films and posters as well as the establishment of a special outpatient clinic. It is expected that the systemic intervention decreases the time between the onset of AN and the first contact with healthcare system as well as the beginning of an ED-specific treatment. It is further assumed that the systemic intervention reduces ED pathology and comorbidity at treatment initiation. Currently, there is no comparable intervention in the field of EDs.

The value of the intervention must be classified as high since a long DUI in AN is one of the strongest predictors of a poor outcome [16]. Evidence-based interventions (e.g. [47]) have to be initiated at an early stage of the illness to develop the full effectiveness. Reducing the DUI is one important step to improve patient flow into special health care in patients with AN. Moreover, the intervention plans to improve the networking of different instances of the health care system. Use of existing resources is increased, which could on a long-term basis lead to a reduction of the high costs for AN treatment [11]. At present, evidence-based treatments for AN [12] are not utilized sufficiently early and targeted [7],[13],[25],[48].

The study aims to evaluate the systemic intervention, which is, next to the value of the intervention itself, of great interest for further public health interventions. Assessing the DUI and additionally the DUC may also lead to a better understanding of the period during the time until the first ED-specific treatment is initiated.

In spite of the huge demand for such evaluated interventions, some limitations to this study have to be mentioned: Since this project is a systemic public health intervention, the implementation of a Randomized Controlled Trial (RCT) is not feasible. Therefore, it is problematic to control confounding factors and make causal conclusions. However, this limitation can be attributed to the aims of the project, which leaves no option of implementing a RCT. Due to the complexity of the systemic intervention it is further not realizable to conduct a dismantling investigation. It is assumed that some parts of the intervention act unconsciously. Therefore an entire understanding of the underlying dependencies will not be possible. Moreover, it is decided to exclude male patients from participation - admittedly at the expense of generalization of the results. The reasons for this decision can be found in the low prevalence of AN in males. It has to be noted that there is a lack of standardized measures assessing DUI and DUC. This makes it necessary to develop a new measure for the purposes of the study. Additionally, the variables of interest mainly can only be assessed retrospectively. To counteract a possible distortion, self-reported data is reviewed in the telephone interview. In addition, it has to be considered that a prospective study would not be feasible due to the low prevalence of AN. There are some further limitations concerning the recruitment of the participants. There may be an adherence bias of the cooperating practitioners leading to different participation rates. There may be also a selection bias: Chronified patients with extremely low body weight may display a very long DUI but may be excluded due to their current physical status. The consequence may be an underestimation of the average DUI in the sample.

Since there hasn’t been a comparable intervention in the field of AN, some hypotheses have to stay exploratory. However, the effectiveness of public health interventions in general could be shown already (e.g. [31]). In the field of EDs the psychenet intervention and its evaluation will gain new knowledge about the DUI and factors influencing this period. Also, the successful implementation of a systemic intervention in this area will improve the networking of different health care professionals and facilitate patients’ flow into specialist care.

BL conceived the study and participated in its coordination. KW and GR participated in the design of the study. AG and AW participated in the design of the study as well as its coordination and drafted the manuscript. NU helped to draft the manuscript. All authors read and approved the final manuscript.