OBJECTIVES: Schizophrenia is highly burdensome, both to patients but also to caregivers of patients with schizophrenia, largely due to the chronic, relapsing nature of the condition. However, caregiver burden imposed by such chronic conditions is often overlooked, and carer perspectives are underrepresented in Health Technology Assessment (HTA) appraisals. The impact of caregiving for a person with schizophrenia is a multidimensional concept. Different instruments are available to evaluate caregivers burden, which vary in their length, domains and population of interests. Therefore, the aim of this study is to define how caregiver burden is currently assessed within the context of schizophrenia.

METHODS: PubMed, Medline, Embase, Global Health and PsychInfo were searched for published articles concerning caregiver’s burden evaluation using different combinations of the following keywords: caregiver, family, burden, schizophrenia, review, metanalysis. The type of the scale used was extracted. A targeted search was also conducted on ePROVIDE to identify any additional relevant scales.

RESULTS: Forty-three studies and 4 reviews were included. Overall, fourteen caregiver burden scales were identified. The Burden Assessment Schedule was the most frequently used scale (34.7%). Validation development evidence was present in most instruments, but only two were developed specifically for caregivers of patients with schizophrenia: Schizophrenia Caregiver Questionnaire and Involvement Evaluation Questionnaire. The items in the scales ranged from 13 to 54 with recall periods ranging from 2 weeks to 12 months. Most scales focused on evaluating caregiver burden, while one measured caregiver adjustment, two measured caregivers’ expressed emotions and another evaluated overall caregiving experience in general.

CONCLUSIONS: The identified scales widely differ in relation to development, focus, and length. The findings suggest the need for improved harmonization of caregiver’s burden assessment within schizophrenia.