First Sociodemographic, Pretreatment and Clinical Data from a German Web-Based Registry for Child and Adolescent Anorexia Nervosa
Abstract
Abstract.Objective: The first web-based registry for childhood and adolescent anorexia nervosa (AN) in Germany was established to systematically collect demographic and clinical data. These data as well as information on how young individuals with AN can find access to healthcare services are presented. Method: Patients´ data from child and adolescent psychiatry departments of 12 university hospitals and two major nonuniversity hospitals in Germany were collected between January 2015 and December 2016. All patients met the ICD-10 diagnostic criteria for (atypical) AN. Sociodemographic data, type and amount of healthcare utilization before admission, and clinical data at admission and discharge were compiled. Results: 258 patients with a mean age of 14.7 years and a mean BMI at admission of 15.3 kg/m2 were included. The parents and patients had a higher educational level than the general German population. More than 80 % of the patients reported having utilized healthcare before hospitalization. The mean duration of outpatient treatment before hospitalization was 7 months. Conclusions: There seem to be major barriers to specialist treatment for young patients with AN in Germany, which should be analyzed in future studies.
Zusammenfassung. Fragestellung: Ziel des ersten deutschen internetbasierten Anorexieregisters ist die Erfassung demographischer und klinischer Daten von Kindern und Jugendlichen, die auf Grund einer (atypischen) Anorexia nervosa (AN) in Deutschland stationär behandelt werden. Dargestellt werden erste soziodemographische und klinische Daten sowie die Ergebnisse zu den Zugangswegen zu ambulanter Behandlung. Methodik: Die Patienten wurden deutschlandweit an zwölf Universitätskliniken und zwei Versorgungskliniken mit kinder- und jugendpsychiatrischen Abteilungen zwischen Januar 2015 und Dezember 2016 rekrutiert. Alle erfüllten die ICD 10 – Kriterien für (atypische) AN. Soziodemographische Daten, Art und Ausmaß der ambulanten Vorbehandlung sowie klinische Parameter bei Aufnahme und Entlassung wurden erhoben. Ergebnisse: 258 Patienten mit einem Durchschnittsalter von 14.7 Jahren und einem durchschnittlichen Aufnahme-BMI von 15.3 kg/m2 wurden eingeschlossen. Das Bildungsniveau der Patienten und deren Eltern war höher als das der deutschen Normalbevölkerung. In mehr als 80 % war der stationären eine ambulante Behandlung vorausgegangen. Die durchschnittliche Dauer der ambulanten Behandlung vor stationärer Aufnahme betrug 7 Monate. Schlussfolgerungen: In Deutschland ist der Zugang zu einer essstörungsspezifischen Behandlung für Kinder und Jugendliche mit AN den vorliegenden Ergebnissen zufolge erschwert. Die Gründe dafür sollten in zukünftigen Studien untersucht werden.
Objective
Anorexia nervosa (AN) is one of the most severe psychiatric disorders and is often associated with poor outcomes and significant mortality rates (Smink, van Hoeken, & Hoek, 2013). Early diagnosis and timely intervention are important for a positive outcome, especially in young patients, because the duration of illness is one of the strongest predictors of outcome in AN (Steinhausen, 2002; van Son, van Hoeken, van Furth, Donker, & Hoek, 2010). Although most adolescent AN patients present to some type of primary care, and the numbers of patients receiving hospital treatment have increased in Germany (German Institute for Federal Statistics, 2017a), a substantial number of patients remains undetected or is admitted with a delay (Bühren et al., 2013). A better understanding of the access paths of AN patients to healthcare might possibly help to detect treatment gaps and barriers to specialist treatment. In this article, we sought to determine how young individuals with AN find ac- cess to healthcare services and to specialist inpatient treatment (IP) in Germany. Because of the relatively low prevalence of this disorder, multisite studies and clinical registries are necessary to reach sufficient statistical power and to closely link the clinical data with the research activities.
To our knowledge, research network and clinical registry activities are to date sparse in the field of eating disorders (EDs). The Swedish national internet-based quality registry RIKSÄT (www.kcp.de) systematically assesses the treatment and outcomes of ED. This registry is part of the so-called STEPWISE database and is used by approximately 70 specialized centers and teams (Birgegård, Björck, & Clinton, 2010; Groß, Birgegård, & Zipfel, 2014). The aim of STEPWISE is to close the gaps between treatment, quality registry, and research. In Australia, an international multisite research database for IP of AN has also been established (Maguire, Surgenor, Abraham, & Beumont, 2003). The database includes the demographic data of patients with AN who accessed specialist IP, documents of treatment response, and disease complications as well as the course of the ED and outcome after IP.
In Germany, information concerning the sociodemographic characteristics and the prior treatment paths or treatment courses of hospitalized children and adolescents with AN was previously unavailable. The first web-based registry for childhood and adolescent AN in Germany to systematically collect AN-specific healthcare data from children and adolescents being treated in an IP setting at participating hospitals was established in January 2015. Since then, data regarding age, sex, education, living situation with caregivers, pretreatment before hospitalization, and clinical data upon admission to IP and at discharge are systematically collected from 14 study centers in Germany.
Using this database, we assessed the following variables: (a) the sociodemographic characteristics of the hospitalized children and adolescents, (b) the type and amount of healthcare utilization before hospitalization, and (c) the clinical data at admission and discharge.
Method
The establishment of the German web-based registry for childhood and adolescent anorexia nervosa was coordinated by the Central Information Office (CIO) in Marburg, Germany. Since 2000, the CIO has been charged with implementing and maintaining IT-technical infrastructures for medical research. Currently, the CIO supports 14 research consortia in Germany and throughout Europe (e. g., the Competence Network on Multiple Sclerosis, the Competence Network on Parkinson’s Disease, the Competence Network on Therapeutic Drug Monitoring in Child and Adolescent Psychiatry, et al.). The methodological standards for data collection, including data safety and data protection, conform to Good Clinical Practice (GCP) regulations (for further details see www.kompetenznetz-parkinson.de).
Participants and Study Design
Participants were recruited from the general child and adolescent psychiatry departments of 12 university hospitals in Germany (RWTH University Clinics Aachen, Charité Universitätsmedizin Berlin, LWL University Clinics Bochum, University Hospital Carl Gustav Carus Dresden, LVR-Klinikum University Clinics Essen, University Medical Center Freiburg, UKGM University Hospital Marburg, University Hospital Heidelberg, University Clinics Ulm, Saarland University Hospital, University Clinics Tübingen, University Hospital of Würzburg) and two major nonuniversity hospitals (LVR-Hospital Bonn, LVR-Hospital Viersen) in various regions of Germany between January 2015 and December 2016. Eight of the 14 study centers stated that they offer ED treatment on a specialized unit.
All patients were children and adolescents up to the age of 18 years who met the ICD-10 diagnostic criteria for (atypical) AN (Remschmidt, Schmidt, & Poustka, 2012). In order to obtain a series of presenting patients with AN as complete as possible, all patients who were consecutively admitted for IP were screened for the study and asked for participation. However, not all patients or parents agreed.
The study was approved by the local research ethics committees of the 12 participating universities and the ethics committees of the regional medical associations (North-Rhine, Bonn, and Viersen). Written informed consent was obtained from all participants and their parents or legal guardians.
For this study, the following parameters from the registry data were analyzed.
Sociodemographic Variables
Age, sex, the living situation of the patient (i. e., living with both parents or a single parent or living in a therapeutic community), the number of siblings, and data on the patient´s education (type of school being attended at the time of admission) as well as data on the parental education were collected.
Healthcare Utilization Before Admission
The patients and their parents were asked to name the medical or psychological specialty to which they first presented because of the ED, how much time had elapsed between the onset of the ED and this first presentation, how many physicians of different disciplines they had seen overall, how many outpatient consultations had taken place and for what length of time patients had undergone outpatient treatment before hospitalization.
Clinical Data at Admission and Discharge
At admission, weight (in kg), height (in cm), body mass index (kg/m2, BMI), duration of illness (i. e., the elapsed time between the initiation of weight loss or insufficient age-appropriate weight gain and admission), menstrual status, and ICD-10 diagnostic criteria (Remschmidt et al., 2012) were recorded for each patient. The sex- and age-specific BMI percentiles were determined based on a large German reference population (Rosario, Kurth, Stolzenberg, Ellert, & Neuhauser, 2010).
At discharge, weight (in kg), height (in cm), BMI (kg/m2), and BMI percentiles were documented.
Statistical Analysis
The means and standard deviations (SD) were calculated for the descriptive statistics of continuous variables, such as the clinical parameters. For the nominal variables, the exact numbers and proportions are provided.
The statistical analyses were performed with IBM SPSS Statistics 22 (IBM Corp. Released 2013. IBM SPSS Statistics for Windows, Version 22.0. Armonk, NY: IBM Corp.).
Results
In 2015 and 2016, 272 patients were included into the registry. For this study, we only analyzed the data from those 258 patients whose basic data at admission (i. e., age, height, and weight) were complete. Concerning the diagnostic assignment to the applied ICD-10 diagnostic criteria for AN or atypical AN, 75.2 % had restricting AN, 8.5 % had the binge eating/purging type of AN, and 16.3 % had atypical AN.
Sociodemographic Data
The mean age at admission for IP was 14.7 years, and 96 % of the patients were female. 70 % of the patients were living with both parents, and 85 % had at least one sibling. Most of the patients attended the “Gymnasium” (i. e., a school covering both the lower and upper secondary levels), and most mothers (52.0 %) and fathers (61.0 %) had attained a higher education entrance qualification (exam after 13 years of school or university degree) (Table 1).
Healthcare Utilization Before Hospitalization
Nearly 85 % of the patients had been treated for ED in an outpatient setting before hospitalization. The mean duration of illness before first presentation was 6.2 ± 6.2 months (range: 0–34 months). The majority had first seen a pediatrician, a child and adolescent psychiatrist, or a general practitioner. Two-thirds of the patients had received outpatient treatment of at least 2 weeks before hospitalization. The mean length of outpatient treatment was 7 months (Table 2).
Clinical Data at Admission and Discharge
In 177 of the 258 patients (68.6 %), the documented hospital stay was the first IP for AN. The mean duration of illness of patients with the first IP was 9 months, whereas the mean duration of illness of the other patients was 18 months. At admission, the mean BMI was 15.3 kg/m2 (BMI-percentile 2.5); at discharge, the mean BMI was 18.1 kg/m2 (BMI-percentile 16.7) (Table 3).
Discussion
This study provides the first data from a web-based German registry of 258 children and adolescents between the ages of 8 and 18 with (atypical) AN admitted for IP in child and adolescent psychiatric hospitals in 2015 and 2016 from 14 study centers in Germany.
Sociodemographic Data
The gender ratio, the duration of illness before hospitalization, and the age at admission were comparable to those of hospitalized children and adolescents with AN in other European countries (Godart et al., 2012; Gowers et al., 2010; Miguelsanz et al., 2016), the US (Gowers et al., 2007; Smith et al., 2016), Canada (Leitner, Burstein, & Agostino, 2016; Toulany et al., 2015), and Australia (Madden et al., 2015; Noetel et al., 2016). Notably, the majority of the patients (56 %) were between the ages of 13 and 15 years or even younger (10 %) at the time of admission. This is in line with other studies; it was previously suggested that the age of onset has been decreasing over the last decades (Nicholls, Lynn, & Viner, 2011; Pinhas, Morris, Crosby, & Katzman, 2011; Steinhausen & Jensen, 2015).
Some 70 % of the patients were living with both parents, which corresponds to the average German family situation (69 %, German Institute for Federal Statistics, 2017b, see Table 1). Other studies of AN patients from Sweden, France, and Australia (Ahrén et al., 2013; Hubert et al., 2013; Madden et al., 2015) revealed comparable percentages. We found a lower percentage of only children in our patient sample (15 %) compared to the German average (26 %, German Institute for Federal Statistics, 2017b, see Table 1) which might be associated with the higher education level of the parents.
A higher proportion of the patients (62 %) attended the German “Gymnasium” (upper secondary level education) than the age-adapted German average (42 %); the maternal and paternal educational levels were higher, too (German Institute for Federal Statistics, 2017b, see Table 1). Our results thus replicate findings from other international studies (Bould et al., 2016; Goodman, Heshmati, & Koupil, 2014; Sundquist, Ohlsson, Winkleby, Sundquist, & Crump, 2016); a higher educational level of the patients and parents may be associated with a greater incidence of EDs in females.
Healthcare Utilization Before Hospitalization
Primary care plays an important role in the early detection of AN (Sangvai, 2016). On average, 6 months elapsed between the first symptoms of the ED and first presentation at any primary-care setting. At first consultation, more than half of the patients had been seen by a general practitioner or a pediatrician, and one-fourth had been seen by a child and adolescent psychiatrist. About 70 % of the patients had consulted at least two physicians of different disciplines. The transition from one service to another may effectively delay treatment and reduce compliance in both patients and their parents (Knoll, Föcker, & Hebebrand, 2013; Treasure, Schmidt, & Hugo, 2005). A study from the UK demonstrated that patients who commence treatment in a general mental health service are at a greater risk of being admitted to the hospital and are more frequently referred to further medical care than patients who are initially treated in a specialist ED service (House et al., 2012). In the UK, several specialist ED services have been established and have significantly shortened the duration of time until specialist service contact as well as the duration of untreated ED (Brown et al., 2016). According to our registry data, another 7 months elapsed on average between first presentation and IP. The study design does not allow a data-based explanation for this finding. However, if we interpret our results correctly, primary-care services might have failed to detect the ED or underestimated the severity of the illness, whereas in other cases outpatient treatment may have simply been unsuccessful. The patients might also have refused to undergo IP (Guarda et al., 2007). A systematic review of several international primary-care studies demonstrated that EDs are often undetected and are poorly managed by general practitioners (Cadwallader, Godart, Chastang, Falissard, & Huas, 2016). In Germany, other major reasons for delayed specialized IP/day pa- tient treatment seem to lie in the lack of specialized ED treatment centers in many regions and/or an insufficient number of places to accommodate patients in the treatment centers that do exist. On the other hand, Germany has much more capability for IP than other European countries. It would be beneficial to increase the availability of specialized outpatient treatment for adolescent AN, which might help to avoid hospitalization.
In our study, the duration of outpatient treatment before admission covers a wide time range, between up to 1 month in 33 % of the patients and more than 2 years in 6 % of the patients. Notably, our data include only hospitalized children and adolescents with AN who are being treated in university and two major hospital departments and might have had a more severe course of illness. Furthermore, from our data, it remains unclear whether a prolonged waiting time for IP had an influence on the duration of outpatient treatment. Nonetheless, improved communication and exchange between general practitioners and specialists in ED including easier access to specialist treatment would be desirable and might increase awareness of EDs and knowledge about treatment.
Clinical Data at Admission and Discharge
The clinical data at admission (i. e., BMI and type of AN) are also comparable to those found in other European studies (Godart et al., 2012; Gowers et al., 2010; Gowers et al., 2007; Miguelsanz et al., 2016), the US (Smith et al., 2016), Canada (Leitner et al., 2016; Toulany et al., 2015), and Australia (Madden et al., 2015; Noetel et al., 2016). One-third of our patients had experienced previous hospitalizations because of ED, which is comparable to data from France (Godart et al., 2012) but more frequent than data reported in an Australian study (Madden et al., 2015). However, the latter might be due to Australia’s having less hospital beds for treatment of ED than European or North American regions.
At discharge, almost half of the patients had still BMIs below the 10th BMI percentile. This is surprising because the recommended target weight in adolescents is the 25th percentile as per the German Clinical Guidelines. A BMI below the 10th BMI percentile is considered a major criterion of acute AN (Herpertz, Herpertz-Dahlmann, Fichter, Tuschen-Caffier, & Zeeck, 2011). However, our data set does not provide any information about the discharge modalities, e. g., whether the patients were discharged against medical advice or changed into residential treatment.
Limitations
Our sample was not community based but rather consisted of children and adolescents who had accessed child and adolescent psychiatric IP. Surveys from the US and Finland (Keski-Rahkonen & Mustelin, 2016; Swanson, Crow, Le Grange, Swendsen, & Merikangas, 2011) report that up to half of patients with EDs never access specialist ED treatment. The percentage of patients who receive IP is presumably even lower, and those patients are probably more severely ill. Furthermore, 12 of the 14 participating centers are university hospitals. Thus, the findings of this study might be influenced by a selection bias. Furthermore, not all patients admitted for IP in the participating centers could be included in our registry. Unfortunately, we do not have any information on the percentage of patients who did not want to participate in the registry and for whatever other reasons were not included. Despite these limitations, this study does provide key information concerning the sociodemographic characteristics, paths of access to treatment, and clinical variables of hospitalized children and adolescents with AN in Germany.
Conclusions
The assessment of the relevant sociodemographic and clinical data within a web-based registry provided insight into the characteristics of a large sample of hospitalized children and adolescents with AN in Germany. A better understanding of the access paths of these patients to healthcare and previous outpatient interventions might possibly help to detect treatment gaps. Recent studies from the UK demonstrated that the establishment of specialist ED services can improve treatment quality and outcomes. There seem to be several major barriers to specialist treatment for ED in Germany, such as primary-care barriers (insufficient knowledge about ED) and service-related barriers (waiting times and poor transition between services), which should be analyzed in future studies.
Conflicts of interest: None
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