Two reports suggest ways to improve outcome by helping caregivers as well as AN patients.
Reprinted from Eating Disorders Review
March/April Volume 27, Number 2
A group of British psychologists and eating disorders specialists had a theory: adding a skilled training intervention for caregivers might improve treatment outcome for inpatients with anorexia nervosa (AN). Dr. Nicholas Magill and colleagues recently reported the results of their two-year randomized study comparing treatment as usual versus adding the Experienced Caregivers Helping Others (ECHO) program to inpatient care (Eur Eat Disorders Rev. 2016. 24:122).
Changes in the National Institute for Clinical Excellence (NICE) guidelines now recommend that inpatient care for eating disorders patients be reserved for those at high medical risk or those who do not respond to outpatient care. Because of the new guidelines, patients admitted for inpatient care may be more severely ill when they are first admitted. Although short-term interventions involving caregivers usually haven’t been very helpful for inpatients (J Psychiatr Prac. 2015. 21:49), the picture improves when family members are involved for longer than a year (PLoS One. 2012. 7, e28249).
Testing the theory in 15 hospitals
Fourteen of the 15 hospitals that participated in the study have specialist eating disorders inpatient wards (13 adult wards and 1 adolescent ward). One group of patients was assigned to treatment as usual and a second to the ECHO group; patients in the ECHO group were given support immediately after they were randomized to treatment.
The ECHO program provides education and skills for carers through a book and 5 DVDs (3 theoretical and 2 practical), as described in a recent report (Eat Disord. 2015. 12-11. [Note: For more information and a professional version of the DVDs, see www.suceedfoundation.org.] Each family also had five 40-minute telephone coaching sessions (up to 10 per mother and father). Single caregivers had access to up to 10 coaching calls with experienced coaches, who had life experience with eating disorders or with postgraduate-level psychologists. Following the NICE guidelines for aftercare, carers in the treatment as usual arm were given contact information for a leading UK eating disorders charity and offered access to the intervention when treatment was completed.
How results were measured
All participants, patients and caregivers, completed self-report questionnaires and or/blinded interview assessments by mail or telephone at admission, and upon discharge from the inpatient unit, and then at intervals over a 2-year period after the patient was discharged. All patients also completed a short monthly telephone assessment of their core eating symptoms. A total of 268 adult caregivers (178 primary caregivers and 90 secondary caregivers) were recruited, including 144 mothers, 81 fathers, 28 partners, 7 siblings, 5 friends and 3 other relatives. Most carers (69%) lived with the patient.
How well did the intervention work?
A small-to-moderate degree of improvement was reported among the ECHO group, but this was not statistically significant because of loss to follow-up. Thirty-three percent (59) patients were lost to follow-up at 24 months.
There was a small drop in body mass index (BMI, mg/kg2) after discharge; overall, BMIs were lowest at the 6-month point but had increased above discharge BMIs by 15 months. At the 24-month follow-up point, patients treated in the ECHO group were estimated to have a higher weight, lower levels of eating disorder psychopathology, and lower levels of general distress.
Once again, none of these differences were statistically significant. Patients in the treatment as usual group had significantly lower BMIs at discharge but the BMIs were comparable in both groups on admission. Some 20% of patients were readmitted for treatment after discharge, and there were 2 deaths during the study.
The authors concluded that providing carers with skills to manage eating disorder symptoms and to provide support following inpatient care is effective for reducing severe malnutrition and for providing respite. Over the long term, educating caregiver may lead to improvement of symptoms in most AN patients.
Interventions for caregivers
Interventions that equip families and close others with skills to manage eating disorder behavior are showing good potential for improving treatment outcome, according to Dr. Janet Treasure and Dr. Bruno Palazzo Nazar, of King’s College, London (Curr Psychiatry Rep. 2016. 18:16). Dr. Treasure, one of authors of the ECHO report, and Dr. Palazzo concluded this after an extensive literature review on caring/parenting interventions for people with eating disorders.
The authors’’ research showed that carers play a very important role early on, before the person with the eating disorder recognizes that he or she is ill, but when the family has become aware of it. Social aspects may then come into play. For example, family members may unwittingly collude with the eating behaviors by organizing family around eating disorders rules, to cover up the negative consequences of the behaviors. These behaviors also can divide family members, making some shoulder more of the burden while others turn away. Another complication is that interventions often have a selective focus on improving the well-being of the carers or the patient, but not both.
Drs. Treasure and Nazar suggest that interventions for caregivers need to take into account the stage of illness and whether certain interpersonal behaviors that may maintain the disorder, such as accommodation, expressed emotion, or family divisions, are present. Some promising approaches include family-based therapy, the New Maudsley approach, which addresses some maintaining interpersonal behaviors (J Eat Disord. 2013. 1:13), and new interventions that specifically target partners (Int J Eat Disord. 2011. 44:19) are all promising. They also suggest that since most of the work has focused on patients with AN, more work is needed to understand caregiving for patients with bulimia nervosa and binge eating disorder.