Gaining consensus on clinical quality outcomes for eating disorders: Framework for the development of an Australian national minimum dataset.

OBJECTIVES: Eating disorders (EDs) are complex psychiatric illnesses requiring multidisciplinary care across both mental and medical healthcare settings. Currently, no nationally comprehensive, consistent, agreed on or mandated data set or data collection strategy exists for EDs in Australia: thus, little is known about the outcomes of care nor treatment pathways taken by individuals with EDs. InsideOut Institute was contracted by the Australian Government Department of Health to develop a minimum dataset (MDS) for the illness group with consideration given to data capture mechanisms and the scoping of a national registry. DESIGN: A four-step modified Delphi methodology was used, including national consultations followed by three rounds of quantitative feedback by an expert panel. SETTING: Due to social distancing protocols throughout the global SARS-CoV-2 pandemic, the study was conducted online using video conferencing (Zoom and Microsoft Teams) (Step 1), email communication and the REDCap secure web-based survey platform (Steps 2-4). PARTICIPANTS: 14 data management organisations, 5 state and territory government departments of health, 2 Aboriginal and Torres Strait Islander advising organisations and 28 stakeholders representing public and private health sectors across Australia participated in consultations. 123 ED experts (including lived experience) participated in the first quantitative round of the Delphi survey. Retention was high, with 80% of experts continuing to the second round and 73% to the third. MAIN OUTCOME MEASURES: Items and categories endorsed by the expert panel (defined a priori as >85% rating an item or category 'very important' or 'imperative'). RESULTS: High consensus across dataset items and categories led to the stratification of an identified MDS. Medical status and quality of life were rated the most important outcomes to collect in an MDS. Other items meeting high levels of consensus included anxiety disorders, depression and suicidality; type of treatment being received; body mass index and recent weight change. CONCLUSIONS: Understanding presentation to and outcomes from ED treatment is vital to drive improvements in healthcare delivery. A nationally agreed MDS has been defined to facilitate this understanding and support improvements.

Research Review: Neuropsychological functioning in young anorexia nervosa: A meta-analysis.

BACKGROUND: Cognitive inflexibility and compulsive behaviours are commonly observed in patients with anorexia nervosa (AN) and are often considered to be caused by impairments in executive functioning and visuospatial processing. Despite an increasing number of young individuals presenting with AN, there is a lack of meta-analytic evidence on the neuropsychological functioning in this population. Our primary aim was to review and synthesize the differences in neuropsychological test performance between young people with AN and healthy controls, and to explore potential moderators. METHODS: A database search following PRISMA guidelines of MEDLINE, PsycINFO, ISI Web of Science and Epistemonikos was conducted. Hedges' g served as an effect size indicating the standardized mean differences. We utilized mixed-effects meta-regression and machine learning meta-analyses to identify relevant moderators. RESULTS: Sixteen studies met the inclusion criteria with a total of 1333 participants (665 with AN) and 59 effect sizes. Random-effects meta-analyses demonstrated a small and insignificant difference between young individuals with AN and controls ( g¯ = -0.144, 95% CI [-0.328, 0.041]) in overall neuropsychological functioning. However, the difference was significant for the cognitive domains of memory, working memory and visuospatial abilities. Moderator and machine-learning analyses revealed a stronger negative effect in older participants and moderator effects of country and assessment quality. CONCLUSIONS: Our findings highlight the significant impact of age on neuropsychological test performance in patients with AN. There is a need for a more widespread inclusion of potentially confounding variables in primary studies as well as instruments specifically targeted at younger populations.

Neuropsychological functioning in adult anorexia nervosa: A meta-analysis.

Several studies have conceptualized neuropsychological dysfunction as part of the core pathology and defining behaviors seen in the eating disorder anorexia nervosa (AN). The aim of the current review was to synthesize the differences in neuropsychological test performance between individuals with AN and healthy controls, quantify and explain their heterogeneity. The search and screening procedures resulted in fifty studies that comprised 186 neuropsychological test results. Utilizing random-effects meta-analyses, the results revealed evidence for significant, moderate underperformance in people with AN in overall neuropsychological functioning (g¯ = -0.43, 95 % CI [-0.50, -0.36]). Weighted mean effect sizes ranged from g¯ = -0.53 for visuospatial abilities to g¯ = -0.10 for planning. Study and participant characteristics, including body mass index (BMI) and age, had significant moderator effects, especially on executive function, memory, and visuospatial abilities. The findings from the current study provide an extensive and comprehensive overview of the possible impairments in neuropsychological functioning in adult patients diagnosed with AN.

Establishing consensus for labeling and defining the later stage of anorexia nervosa: A Delphi study.

OBJECTIVE: Varied perspectives on the later stage of anorexia nervosa (AN) have left the field of eating disorders without a consistent label or definition for this subpopulation. As a result, diverse criteria when recruiting participants have led to incomparable results across research studies and a lack of guidance when assessing and treating patients in the clinical context. The aim of the current study was to develop consensus-based guidelines on the labeling and defining of the later stage of AN. METHOD: Utilizing the Delphi methodology, a professional panel of experts (N = 21) participated in three rounds of questionnaires. Five open-ended questions (Round 1) were analyzed using content analysis to form statements relating to a classification system for labeling and defining the later stage of AN. A total of 80 statements were rated in terms of panelists' level of agreement (Rounds 2 and 3). RESULTS: Consensus was achieved for 28.8% of statements and a further 16.3% of statements reached near consensus in the second and third round of questionnaires. Two labels were identified with five defining features achieving consensus. DISCUSSION: Findings from the study suggest an alternative approach to labeling be adopted with consensus-based guidelines established for defining the later stage of AN. Implications that may occur from a unified classification system are explored with longitudinal research required to assess the impact on patients experiencing the later stage of AN.

The Neuropsychological Profile of Severe and Enduring Anorexia Nervosa: A Systematic Review.

Characteristics of Severe and Enduring Anorexia Nervosa (SE-AN) are being investigated to differentiate the patients experiencing SE-AN from those at earlier stages of the AN disease. The current systematic review was the first step in exploring neuropsychological functioning as a potentially identifying characteristic for long-term presentations. With a subgroup of AN patients reflecting a unique neuropsychological profile that is proportionate to the quantity of patients that go on to develop SE-AN, it was the aim of this review to assess neuropsychological functioning in the later stage of the disease. In accordance with PRISMA guidelines, a literature search was conducted using four electronic databases (PsycINFO, MEDLINE, Web of Science, and Scopus) for neuropsychological research on AN participants with a seven or more year illness duration. Datasets that met inclusion criteria were screened for SE-AN participants (N = 166) and neuropsychological data extracted together with potentially confounding variables and information required to conduct a quality assessment. In research investigating decision-making, participants with a SE-AN presentation demonstrated significantly lower functioning compared to healthy controls. There was conflicting evidence for differences in intellectual functioning and set-shifting abilities with no variability indicated in central coherence, memory, attention, reasoning, or processing speed. If findings from this preliminary analysis are confirmed through empirical research, implications include earlier identification of SE-AN patients and more effective treatment development.

Lived experience perspectives on labeling and defining long-standing anorexia nervosa.

OBJECTIVE: Since efforts to stage anorexia nervosa (AN) revealed the existence of various presentations, research into the long-standing subgroup has increased. A change in treatment has been proposed with the intention to use more effective evidence-based methods that target symptoms of the long-standing presentation and improve prognosis. A barrier in achieving this goal in both research and clinical contexts is the lack of a consistent label and definition. This makes the ability to assess, recruit and treat these presentations difficult. Investigations into how this subgroup may be differentiated from other stages of the disorder have included the opinions of practitioners and researchers with little consideration for the perspectives of individuals living with this illness. It was the aim of the current study to investigate lived experience perspectives on the way long-standing AN should be labeled and defined. METHODS: Data were collected through a semi-structured interview within a narrative inquiry framework. This approach is beneficial when examining processes that occur over time, such as investigations into a long-term illness. A total of 11 women with a presentation of long-standing AN participated in an interview. Data were divided into two categories for analysis based on the association to labeling or defining the features of the long-standing AN illness. RESULTS: Two labels emerged during the analysis with participants describing a preference for the use of 'severe and enduring' over 'chronic' when referring to their presentation of AN. When defining the illness, the most preferred criterion was illness duration with mixed perspectives for the use of previously failed treatment attempts. Participants described a consistent dislike for the use of low body weight as a feature in the defining of the illness. CONCLUSIONS: The current study describes how individuals with a lived experience prefer to have the long-standing AN presentation labeled and defined. It is the hope of the authors that these insights will be adopted into any guidelines developed to ensure individuals most affected by this disorder have a voice and continue to be given the opportunity to contribute to topics related to their illness. Anorexia nervosa (AN) is a complex illness that has been divided into stages based on the severity of symptoms. Little is known about the AN stage that persists over lengthy periods of time with research pursuits underway to determine characteristics that allow this disorder to persevere. A barrier in researching and treating these individuals is the lack of a consistent label to refer to these presentations and criteria that will allow us to identify this stage of AN. The aim of the current study was to determine how individuals with a lived experience of long-standing AN prefer to have their illness labeled and defined. A total of 11 women who had experienced this stage of AN were interviewed with the majority of participants reporting to prefer the label 'severe and enduring' over the term 'chronic'. Additionally, most of the participants had a preference for defining their illness based on the duration of time the illness had persisted with mixed opinions for using the number of previously unsuccessful treatment attempts as criterion. The authors are hopeful that any guidelines established for labeling and defining long-standing AN will incorporate the perspectives of individuals with a lived experience of the illness.

How and why does the disease progress? A qualitative investigation of the transition into long-standing anorexia nervosa.

OBJECTIVE: Despite an increased interest in understanding characteristics of long-standing anorexia nervosa (AN), there is a lack of knowledge into the processes that occur with the development and maintenance of the disease. This has impeded the development of novel treatment approaches that may prove more effective than traditional medical models of therapy. To improve the prognosis of these long-standing presentations, an understanding as to how and why the AN disease progresses is required. It was therefore the aim of the current study to investigate the transition of AN from earlier to later stages. METHOD: The study adopted a narrative inquiry approach and a total of 11 women with long-standing AN participated in an interview. The newly developed photovoice method assisted in data collection with typologies of chronic illness facilitating the emergence of salient themes. RESULTS: The qualitative analysis resulted in the identification of five themes: (a) transition, (b) trauma, (c) functionality, (d) identity, and (e) failure of current models of treatment. CONCLUSIONS: Together with identifying key themes, the study provides insight into some possible reasons why current treatment models are failing to promote recovery. Future research examining the effectiveness of treatment that targets underlying causes and maintaining factors of the illness are suggested. Additional education for health professionals is also recommended in order to reduce the trauma that is currently being experienced by some patients with a long-standing illness.

Anorexia nervosa (AN) is a complex illness that has the potential to develop into a long-term presentation. When this occurs, the best way of treating this stage of the disease is currently being debated with new models of care being investigated and compared to more traditional approaches to treatment. One of the difficulties in developing more effective treatment is the lack of understanding into how and why the AN illness transitions from an earlier to later stage. It was the aim of the current study to discover the changes that occur as the AN illness progresses. A total of 11 women were interviewed to discuss their experience of AN as it progressed into a long-term illness. It was discovered that across participants, five themes emerged: (a) transition, (b) trauma, (c) functionality, (d) identity, and (e) failure of current models of treatment. Possible reasons as to why current treatment approaches are not working for long-term AN are discussed. Recommendations are made for improving education for health professionals so as to reduce the trauma that is currently being experienced by some individuals with a long-standing illness.

Labeling and defining severe and enduring anorexia nervosa: A systematic review and critical analysis.

OBJECTIVE: With anorexia nervosa (AN) having various presentations, attention has been directed towards particularly durable forms of the condition in both research and clinical contexts. A major hindrance in terms of advancing the field is the inconsistent labeling and defining of this subgroup. This has two implications; first, the inconsistent recruitment of participants when researching this sample, and second, the misdiagnosing of patients who may or may not have a durable course of the disease. The current research had the purpose of providing an overview of the current labels and criteria used for defining cases of severe and enduring AN, and critically analysing the implications of these findings. METHOD: In accordance with PRISMA guidelines, a literature search was conducted using four electronic databases (PsycINFO, MEDLINE, Web of Science and Scopus) in order to identify 32 records that met the standards stipulated by the criteria. Data extraction included explicit labeling, the definition or criteria used to describe the subgroup, along with participant age and study design. RESULTS: It was found that the terms chronic and severe and enduring were the most commonly used adjectives when referring to this subgroup. In terms of criteria, illness duration and the number of previously failed treatment attempts were the most common defining features within the literature. DISCUSSION: It is the aim of the authors to inspire further research into what is the most appropriate label and defining features for the subgroup in order to facilitate a better approach and outcome for the individuals affected.

Objetivo: Con la Anorexia Nervosa (AN) teniendo varias presentaciones, tanto en la investigación como en los contextos clínicos, la atención se ha dirigido particularmente hacia las formas duraderas de esta condición. Un obstáculo importante en términos de avanzar en el campo es la inconsistencia en el etiquetado y definición de este subgrupo. Esto tiene dos implicaciones; Primero, el inconsistente reclutamiento de participantes cuando se investiga esta muestra, y segundo, el diagnóstico equivocado de pacientes que pueden o no tener un curso duradero de la enfermedad. La presente investigación tiene el propósito de proporcionar una visión general de las etiquetas actuales y los criterios utilizados para definir los casos de AN severa y duradera, y analizar críticamente las implicaciones de estos hallazgos. Método: De acuerdo con las guías PRISMA, se realizó una búsqueda en la literatura utilizando cuatro bases de datos electrónicas (PsycINFO, MEDLINE, Web of Science y Scopus) para identificar 32 artículos que cumplían con los estándares estipulados por los criterios. La extracción de datos incluyó el etiquetado explícito, la definición o criterio utilizado para describir este subgrupo, junto con la edad del participante y el diseño del estudio. Resultados: Se encontró que los términos crónico, severo y duradero eran los adjetivos más comúnmente utilizados cuando se referían a este subgrupo. En términos de criterios, la duración de la enfermedad y el número de intentos de tratamiento previamente fallidos fueron las características definitorias más comunes dentro de la literatura. Discusión: Uno de los objetivos de los autores es inspirar a que se realice más investigación en torno a cuál sería el etiquetado y la definición más apropiados para este subgrupo y así facilitar un mejor abordaje y resultados para los individuos afectados.