Predictors of change in perceived burden among caregivers of patients with eating disorders

Abstract

Little is known about whether the perceived burden of caring for someone with an eating disorder (ED) changes over time or what may predict such change. In this prospective study of ED patients and their caregivers, caregivers answered the Involvement Evaluation Questionnaire - EU Version (IEQ-EU), the Hospital Anxiety and Depression Scale (HADS), the SF-12, and the Anorectic Behaviour Observation Scale (ABOS) at baseline and after one and two years of follow-up. On the same schedule, patients answered the HADS and the SF-12, as well as the Eating Attitudes Test (EAT-26) and the Health-Related Quality of Life in ED - short form (HeRQoLED-s). The psychiatrists assessed ED severity using the Clinical Global Impressions (CGI) scale. Perceived caregiver burden significantly improved over the first year of follow-up; no further improvement was observed with longer follow-up. Reduction in perceived burden was associated with lower anxiety in caregivers and patients, and lower caregiver's perception of the severity of the patient's ED. With a decrease in patients' depressive symptoms, caregivers felt less need to urge them to carry out activities of self-care. The IEQ-EU evaluates burden of caring in psychosis and mood disorders, but not for EDs. Loss of participants during the study could limit the generalization of results for the second year of follow-up. These data corroborate the need to monitor the health of caregivers of ED patients and provide them with tools to manage the consequences of these disorders, because these consequences can determine the burden perception independent of patients' symptoms.