The Lived Experience of Cognitive Impairment Associated with Schizophrenia (CIAS): A Conceptual Model

Abstract Background Cognitive impairment associated with schizophrenia (CIAS) has a substantial impact on people living with the condition. We aimed to update a 2012 conceptual model of CIAS with consideration of lived experience using insights from multinational cohorts of healthcare stakeholders and people living with schizophrenia. Methods To update the 2012 conceptual model, we used insights from a targeted literature review, concept elicitation interviews with adults living with schizophrenia (n = 26) and healthcare stakeholders (n = 83), three patient advisory boards (n = 32), and clinical trial exit interviews of participants (n = 37) from the CONNEX-X clinical trial. Results Six relevant articles were identified that reported 52 CIAS signs and symptoms and 33 impacts of CIAS. CIAS domains highlighted in the concept elicitation interviews as affecting participants’ lives included attention (92% of participants), social cognition (84%), processing speed (80%), and memory (76%). Advisory board participants reported impacts of CIAS on daily life and independent living, including career goals and relationships. CONNEX-X exit interviewees reported memory problems (51% of participants), difficulties in learning new things (46%), and concentration difficulties (43%). These insights were used to expand the CIAS model and provide more nuance and granularity. Conclusion The findings of this study highlight the substantial burden of CIAS on the daily lives of people living with schizophrenia and the impact on their quality of life. A modern CIAS conceptual model is important for the assessment of cognitive impairment in both clinical trials and clinical practice.