Care Partner Burden and Experiences With Schizophrenia: A National Canadian Survey
Author(s)
Glenda Babe, PhD1, Anisia Wong, MSc2, Soo Jin Seung, BSc2, Raymond Milan, PhD1, Sean Tiggelaar, MSc1, Noam Ship, PhD1, Jenny Wang, MBA, MD3, Chris Summerville, MDiv4, David Jeffrey Robinson, MD5, Heather McNeely, MD6, Robert Zipursky, MD7, Ofer Agid, 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, 6McMaster University and St. Joseph's Healthcare Hamilton, Hamilton, ON, Canada, 7Centre for Addiction and Mental Health, Toronto, 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, 6McMaster University and St. Joseph's Healthcare Hamilton, Hamilton, ON, Canada, 7Centre for Addiction and Mental Health, Toronto, ON, Canada.
OBJECTIVES: To describe the characteristics, caregiving experiences, and burden faced by care partners of people living with schizophrenia in Canada.
METHODS: An electronic survey was conducted between October and December 2024, targeting care partners across Canada through clinics specializing in psychotic disorders, patient organizations, and market research panels. The survey included: (1) questions about demographics, caregiving information, and severity of cognitive impairment associated with schizophrenia (CIAS) experienced by the person in their care; and (2) validated instruments such as Patient Global Impression of Severity (PGI-S), EQ-5D-5L, and the Work Productivity and Activity Impairment Questionnaire (WPAI). Results were analyzed by CIAS severity and stable/active symptoms.
RESULTS: 200 care partners completed the survey (68.5% women, mean age 54.2±16.1 years) and 90.0% identified themselves as family members caring for the person living with schizophrenia (35.5% were parents and 21.0% were siblings). 59.0% reported involvement of a secondary care partner, and 21.0% received support from a personal support worker. Most reported moderate (45.5%) or severe (15.0%) CIAS severity of the person they cared for. 75.0% were supporting individuals with stable illness. 37.0% were retired, 33.5% worked full-time, 18.0% worked part-time, and 39.8% reported reduced income due to caregiving. Among employed respondents, the mean work productivity loss was 36.8% (±29.5%), including 33.3% (±27.7%) impairment while at work (presenteeism), and 7.2% (±12.9%) work time missed due to challenges with the mood and mental state of the person they care for. Work productivity and EQ-5D-5L scores declined with increasing CIAS severity and active symptoms.
CONCLUSIONS: Care partners of individuals with schizophrenia, particularly those supporting individuals with severe CIAS or active symptoms, face substantial burdens that lower their quality of life and productivity. These findings underscore the need for support strategies to alleviate caregiver burden.
METHODS: An electronic survey was conducted between October and December 2024, targeting care partners across Canada through clinics specializing in psychotic disorders, patient organizations, and market research panels. The survey included: (1) questions about demographics, caregiving information, and severity of cognitive impairment associated with schizophrenia (CIAS) experienced by the person in their care; and (2) validated instruments such as Patient Global Impression of Severity (PGI-S), EQ-5D-5L, and the Work Productivity and Activity Impairment Questionnaire (WPAI). Results were analyzed by CIAS severity and stable/active symptoms.
RESULTS: 200 care partners completed the survey (68.5% women, mean age 54.2±16.1 years) and 90.0% identified themselves as family members caring for the person living with schizophrenia (35.5% were parents and 21.0% were siblings). 59.0% reported involvement of a secondary care partner, and 21.0% received support from a personal support worker. Most reported moderate (45.5%) or severe (15.0%) CIAS severity of the person they cared for. 75.0% were supporting individuals with stable illness. 37.0% were retired, 33.5% worked full-time, 18.0% worked part-time, and 39.8% reported reduced income due to caregiving. Among employed respondents, the mean work productivity loss was 36.8% (±29.5%), including 33.3% (±27.7%) impairment while at work (presenteeism), and 7.2% (±12.9%) work time missed due to challenges with the mood and mental state of the person they care for. Work productivity and EQ-5D-5L scores declined with increasing CIAS severity and active symptoms.
CONCLUSIONS: Care partners of individuals with schizophrenia, particularly those supporting individuals with severe CIAS or active symptoms, face substantial burdens that lower their quality of life and productivity. These findings underscore the need for support strategies to alleviate caregiver burden.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR38
Topic
Economic Evaluation, Patient-Centered Research, 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