The Burden of Cognitive Impairment Associated With Schizophrenia (CIAS) on People With Lived Experience (PWLE): A National Canadian Survey
Author(s)
Raymond Milan, PhD1, Soo Jin Seung, BSc2, Glenda Babe, PhD1, Anisia Wong, MSc2, Sean Tiggelaar, MSc1, Noam Ship, PhD1, Jenny Wang, MBA, MD3, Chris Summerville, MDiv4, David Jeffrey Robinson, MD5, Robert Zipursky, MD6, Ofer Agid, MD6, Heather E. McNeely, MD7.
1Boehringer Ingelheim, Burlington, ON, Canada, 2Sunnybrook Health Sciences Centre, Toronto, ON, Canada, 3Boehringer Ingelheim Corporation, Ridgefield, Connecticut, CT, USA, 4Schizophrenia Society of Canada, Steinbach, MB, Canada, 5Canadian Mental Health Association, London, ON, Canada, 6Centre for Addiction and Mental Health, Toronto, ON, Canada, 7McMaster University and St. Joseph's Healthcare Hamilton, Hamilton, ON, Canada.
1Boehringer Ingelheim, Burlington, ON, Canada, 2Sunnybrook Health Sciences Centre, Toronto, ON, Canada, 3Boehringer Ingelheim Corporation, Ridgefield, Connecticut, CT, USA, 4Schizophrenia Society of Canada, Steinbach, MB, Canada, 5Canadian Mental Health Association, London, ON, Canada, 6Centre for Addiction and Mental Health, Toronto, ON, Canada, 7McMaster University and St. Joseph's Healthcare Hamilton, Hamilton, ON, Canada.
OBJECTIVES: To assess the burden of schizophrenia and cognitive impairment associated with schizophrenia (CIAS) among people with lived experience (PWLE) in Canada.
METHODS: An electronic survey targeting adults with self-reported schizophrenia was distributed across Canadian patient organizations, clinics specializing in psychotic disorders, and market research panels between October and December 2024. The survey included: (1) questions on participants’ socio-demographics, daily support needs, schizophrenia management and whether they had stable or active symptoms (based on recent change in antipsychotics or hospital/emergency visits); (2) Patient Global Impression of Severity (PGI-S) to measure CIAS severity and the Schizophrenia Quality of Life Scale (SQLS) for quality of life (QoL). Results were analyzed by CIAS severity and stable/active symptoms.
RESULTS: 201 PWLE completed the survey (58.2% men, mean age=38.8±13.3 years). PWLE reported having none (10.9%), mild (43.3%), moderate (42.8%), or severe (3.0%) CIAS, with 37.8% reporting active symptoms. Overall, 56.2% had a health professional (HP) encounter in the prior month and 90.5% received antipsychotic medication(s). HP encounters and clozapine use increased with CIAS severity and active symptoms. While most PWLE did not receive support from a care partner (60.7%) or personal support worker (67.7%) in daily activities, caregiving support increased significantly with CIAS severity and active symptoms (p<0.001). PWLE reported low QoL (mean SQLS total score=54.6±17.6), which worsened with higher CIAS severity and active symptoms (p<0.001).
CONCLUSIONS: This national survey revealed that a large proportion of PWLE reported having moderate-severe CIAS or active symptoms. Those with more severe CIAS had more HP interactions, received greater support in daily activities, and experienced lower QoL. Addressing CIAS as part of overall schizophrenia management would be important to improving daily functioning for PWLE, thus alleviating the clinical, social and economic burden associated with schizophrenia.
METHODS: An electronic survey targeting adults with self-reported schizophrenia was distributed across Canadian patient organizations, clinics specializing in psychotic disorders, and market research panels between October and December 2024. The survey included: (1) questions on participants’ socio-demographics, daily support needs, schizophrenia management and whether they had stable or active symptoms (based on recent change in antipsychotics or hospital/emergency visits); (2) Patient Global Impression of Severity (PGI-S) to measure CIAS severity and the Schizophrenia Quality of Life Scale (SQLS) for quality of life (QoL). Results were analyzed by CIAS severity and stable/active symptoms.
RESULTS: 201 PWLE completed the survey (58.2% men, mean age=38.8±13.3 years). PWLE reported having none (10.9%), mild (43.3%), moderate (42.8%), or severe (3.0%) CIAS, with 37.8% reporting active symptoms. Overall, 56.2% had a health professional (HP) encounter in the prior month and 90.5% received antipsychotic medication(s). HP encounters and clozapine use increased with CIAS severity and active symptoms. While most PWLE did not receive support from a care partner (60.7%) or personal support worker (67.7%) in daily activities, caregiving support increased significantly with CIAS severity and active symptoms (p<0.001). PWLE reported low QoL (mean SQLS total score=54.6±17.6), which worsened with higher CIAS severity and active symptoms (p<0.001).
CONCLUSIONS: This national survey revealed that a large proportion of PWLE reported having moderate-severe CIAS or active symptoms. Those with more severe CIAS had more HP interactions, received greater support in daily activities, and experienced lower QoL. Addressing CIAS as part of overall schizophrenia management would be important to improving daily functioning for PWLE, thus alleviating the clinical, social and economic burden associated with schizophrenia.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR225
Topic
Patient-Centered Research, Real World Data & Information Systems, Study Approaches
Topic Subcategory
Health State Utilities, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Mental Health (including addition), No Additional Disease & Conditions/Specialized Treatment Areas