[Need for information on eating disorders among those affected and their caregivers-results of a nationwide multi-method study].

Abstract

Background: In eating disorders, early intervention is crucial in order to achieve remission. Nevertheless, in many cases the illness remains undetected or untreated. This could also be due to a lack of information among those affected and their relatives. The aim of this study was to survey the information services and material available nationwide as well as the need for information among persons affected by eating disorders, their families and their friends.

Methods: In the NEEDS (NEeds in Eating DisorderS) project (August 2017 to July 2018), services and materials from 149 psychiatric, psychosomatic and psychotherapeutic institutions offering treatment for eating disorders were analysed. The need for information was assessed by means of an online survey of 109 sufferers and 46 relatives/friends.

Results: The institutions provided mostly information in the form of brochures and flyers. Therapy information was provided by 51.5% of the institutions, and specific educational information was offered by 32.9% on bulimia nervosa, by 32.2% on anorexia nervosa and by 22.2% on binge eating disorder. Only 13.4% of the institutions addressed male sufferers. The survey shows that around half of the participants regretted the absence of information material. Adult sufferers mainly wished for more brochures/flyers and guides, while young people wished for more self-help literature, guides and personal experience reports. The desire for more information on clinics and treatment concepts was also expressed.

Discussion: The results can contribute to improving publicly available information on eating disorders and their treatment options. A clinic guide, which is currently being developed for the Federal Institute of Public Health (BIÖG, formerly Federal Centre for Health Education - BZgA), could close the information gap.