Title: Does a proven intervention to improve functioning of carers also benefit the anorexia nervosa sufferer for whom they care? A pilot study of our Expert Carer Helping Others (ECHO) intervention.
Funder: Department of Health (England)

Abstract: Background Anorexia nervosa (AN) has a lifetime prevalence of 1% in females and a 10-20% lifetime fatality rate (1). Timely and effective treatment prevents AN from becoming entrenched (2-4). Symptoms can be maintained by family reactions to the illness. In response to the manifestations of AN in the sufferer, 50% of carers (usually parents) exhibit clinically significant anxiety/depression (5). The carer’s own symptoms, plus their uncertainty about how to help, impinge upon the AN sufferer, exacerbating symptomsThe intervention, Expert Carers Helping Others (ECHO) (a book(6) and DVD video demonstrations- annex 4- available on request) alone or supplemented with coaching, targets parents’ coping and improves their mental health and caring behaviour (7, 8). Aims We aim to find out if ECHO results in more rapid and stable reduction in AN symptoms of patients aged 13-21 compared to treatment as usual (TAU) alone by providing carers with information and effective skills. In a third arm we will find if the addition of coaching (ECHOc) from “expert carers” i.e. individuals with their own experience of living with an eating disorder, makes a difference. Secondary research questions are: What are the relative costs between arms? What are the effects on carer’s wellbeing between arms? Can ECHOc be delivered to a high level of competence? Are there therapist effects? Can ECHO and/or the training/delivery of coaching be optimised further? What are the benefits or harms (if any) to the “expert carers”? Plan of Investigation Families of young people with AN ascertained from 5 UK centres (see annex 4). Randomisation is into three groups: 1.Treatment as usual (TAU); 2.TAU plus ECHO; 3. TAU plus ECHOc (with coaching). “Expert carers” are trained to deliver ECHOc. The primary outcome is rate of change of a summary symptom score collected monthly for one year. Secondary outcomes include general psychiatric morbidity of AN and carer, carers’ coping and behaviour, change in health care use and costs at 6 months and one year. Quality Assurance (QA) for ECHOc measured from therapist and carer behaviours including competency ratings. Benefits and harms (if any) and experiences of the expert carers are monitored. This information will inform the design of a full-scale trial. Potential Impact This prepares for executing a definitive trial powered to determine the impact of the preferred variant of ECHO on outcome. The current study is exploratory. Data on 6 month outcome will be available for writing the protocol for the definitive trial at 2 years with an expected trajectory for patient benefit evidence within 5-6 years. ECHO is currently used locally with benefit for carers (10, 11) and indirectly for AN patients(9). Effective involvement of families early in the treatment of AN improves five year outcome (4) preventing the development of treatment resistant AN in adulthood. Training “expert carers” to deliver the coaching may improve the effectiveness and is a means of disseminating expertise to areas where there is little provision for eating disorders.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH