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. PLAIN ENGLISH SUMMARY: 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.