Parents of a loved one with an eating disorder report high levels of unmet needs. Research is needed to understand whether clinical guidance designed to improve the experience of parents has been effective.

To establish parents’ experiential perspectives of eating disorder care in the UK, compared with guidance published by Beat, a UK eating disorders charity, and Academy for Eating Disorders, the leading international eating disorders professional association.

A total of six focus groups (one online and five face-to-face) were held throughout the UK. A total of 32 parents attended. All participants were parents of a loved one with a diagnosis of anorexia nervosa or atypical anorexia nervosa (mean age 22 years; mean duration of illness 4.4 years). Focus groups were transcribed, and the text was analysed with an inductive approach, to identify emerging themes.

Four key themes were identified: (a) impact of eating disorder on one's life, (b) current service provisions, (c) navigating the transition process and (d) suggestions for improvement.

Current experiences of parents in the UK do not align with the guidelines published by Beat and Academy of Eating Disorders. Parents identified a number of changes that healthcare providers could make, including improved information and support for parents, enhanced training of professionals, consistent care across all UK service providers, policy changes and greater involvement of families in their loved one's care. Findings from this project informed the design of a national web-survey on loved ones’ experience of care in eating disorders.

The aims of this study were to analyse the quality of life (QoL) of a broad sample of patients with eating disorders (ED) and to identify potential factors that predict QoL.

This prospective cohort study involved 528 patients diagnosed with ED and treated over a 15-year period in the Eating Disorders Outpatient Clinic. Information on sociodemographic and clinical data were gathered. Patients completed five self-administered instruments: the Eating Attitudes Test-26 (EAT-26); the Eating Disorder Diagnostic Scale (EDDS); the Hospital Anxiety and Depression Scale (HADS); the Short-Form 12 (SF-12); and the Quality of Life in ED-short form (HeRQoLED-s). Descriptive, univariate analyses and multivariate linear regression models were applied to identify factors associated with QoL.

Predictive variables for a low level of QoL in patients with anorexia nervosa (AN) included antidepressant treatment (P = 0.009), substance abuse disorder, (P = 0.03) and other organic comorbidities (P < 0.0001). For patients with bulimia nervosa (BN), they included osteoporosis (P = 0.0001), obesity (P = 0.0004) or being a student (P = 0.04). For patients with eating disorders not otherwise specified (EDNOS), they included anxiolytic treatment (P = 0.003), having circulatory disease (P = 0.001), more years since start of ED treatment (P = 0.03) and living alone (P < 0.0001).

We found a significant difference in QoL between the diagnostic ED groups. With regard to the variables predicting QoL in ED patients, the findings of this study suggest that organic or psychiatric comorbidities and some data of social normality might be more relevant to QoL in ED than age, type of compensatory behaviour, BMI or number of visits to hospital emergency department.