Perceived Burdens and Educational Needs of Caregivers of People with Schizophrenia: Results of a National Survey Study

Leslie Citrome,1 Emily Belcher,2 Sylvie Stacy,2 Mark Suett,3 Marko Mychaskiw,4 Gregory D Salinas2 1Department of Psychiatry and Behavioral Sciences, New York Medical College, Valhalla, NY, USA; 2Department of Research and Assessment, CE Outcomes, LLC, Birmingham, AL, USA; 3Teva UK Limited, Global Medical Affairs, Harlow, UK; 4Teva Branded Pharmaceutical Products R&D, Inc., Global Health Economics and Outcomes Research, West Chester, PA, USACorrespondence: Leslie Citrome 11 Medical Park Drive, Suite 102, Pomona, NY, 10970, USATel +1 845 362 2081Email citrome@cnsconsultant.comPurpose: Schizophrenia is a chronic, serious, and disabling mental disorder that affects how an individual thinks, feels, and behaves. With the availability of effective antipsychotic medications, the care of people with schizophrenia has shifted from psychiatric hospitals to outpatient treatment and caregivers, including family members. Caregivers are an often-overlooked target for education but may be a key resource to enhance patient education and foster greater adherence to treatment. This study sought to examine the burdens faced by caregivers and determine their specific educational needs.Methods: A survey instrument was developed and fielded to 96 caregivers of patients with schizophrenia in the United States (September–October 2019) via online communities and caregiver newsletters. Survey responses were organized into specific topics: symptoms exhibited when diagnosed, current treatment options and use of long-acting injectable (LAI) antipsychotic medications, treatment adherence attitudes, barriers for caregivers and patients, informational resources utilized, and caregiver information and educational topics.Results: Caregivers identified hallucinations, delusions, disorganized behavior, thought disorder, and aggression as the most worrisome symptoms of schizophrenia. Most caregivers felt that they act as a mediator between the medical team and the patient and that they are responsible for the patient’s adherence to ...