None listed
Conditions
Brief summary
The Lily Registry will aim to: a. collect data about inpatients with medical complications of eating disorders b. define the practice and improve outcomes for patients with medical complications of eating disorders c. encourage translational research, innovation, and clinical leadership in best practice care across South Australia for this important and challenging patient cohort d. enable excellence in inpatient care of people with medical complications of eating disorders by supporting best-practice multidisciplinary care and continuous quality improvement
Interventions
The Lily Registry will include all patients with eating disorders identified as medically unstable upon admission to the emergency department of a hospital, and if the instability is secondary to the eating disorder. These patients will be given the option to ‘opt-out’ of ongoing data collection in the Registry for their current hospital admission, once they are deemed stable by the attending clinical team. Participation is presumed unless the patient takes action to decline to participate. Data
The Lily Registry will include all patients with eating disorders identified as medically unstable upon admission to the emergency department of a hospital, and if the instability is secondary to the eating disorder. These patients will be given the option to ‘opt-out’ of ongoing data collection in the Registry for their current hospital admission, once they are deemed stable by the attending clinical team. Participation is presumed unless the patient takes action to decline to participate. Data regarding the patient’s condition, cognitive-behavioural changes and general care will be obtained by the treating medical staff including attending physicians, nurses, dietitians, psychiatrists, paediatricians (if applicable), or authorised delegees. There is also an ‘opt-in’ component of the project that requires self-reporting by the patient. These questionnaires will be made available to the patient via an email link which can be accessed on a tablet, computer, or mobile phone. Those who consented to the opt-in componenet of the study will receive questionnaires at regular intervals after discharge at 3, 6 and 12 months. All participants will be closely followed up by a team at outpatient clinics, community dieticians or readmission to hospital as part of their standard course of treatment and is not related to the project itself. Patient-identifiable information in the Registry is only visible to the treating clinical team. Data can be de-identified or re-identified based on role permissions granted to registry personnel. The collected data will be encrypted and securely stored. Thus, The Lily Registry will act as a platform to improve service quality for this very vulnerable group of patients, with the resultant learning and clinical research opportunities for clinicians and trainees. This registry will include both adult and paediatric patients. There is no defined duration or endpoint for the Registy. According to the ASCQHC National Framework for Clinical Quality Registries consultation paper, “CQRs shall support the retention of active records over 20 year periods to support longitudinal data analysis. After 20 years, records will be archived, but still be available for analysis."
Sponsors
South Australian Association of Internal Medicine (SAAIM)
Eligibility
Sex/Gender
All
Age
9 Years to 70 Years
Healthy volunteers
No
Inclusion criteria
The participant should be diagnosed as having one of the 5 recognised eating disorder conditions and be in a medically unstable condition due to symptoms and behaviour due to eating disorder (Anorexia Nervosa, Bulimia Nervosa, Avoidant/restrictive food intake disorder, Binge Eating Disorder, OFSED (Other specified feeding or eating disorder)). The diagnosis might be new or existing.
Exclusion criteria
(a). patients with an eating disorder who are not medically unstable. (b). patients whose medical instability is not directly related to the symptoms and behaviour of their eating disorder, e.g., someone admitted for pneumonia, but also has an eating disorder, where the pneumonia is not the result of the eating disorder. (c). patients under the age of 18 years (only applicable to sites that cater for adult patients only)
Outcome results
None listed