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New real-world data highlight health and financial impact of caring for an adult with schizophrenia

Data presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Annual European Congress, , The Netherlands, reveal that caregivers of adults with schizophrenia had consistently worse estimated mental and physical health outcomes than other caregivers and non-caregivers, including significantly more sleep difficulties, insomnia and pain.1,2

The analyses measured the impact of caring for an adult with schizophrenia on the caregivers’ physical and mental health, work productivity and activity impairment, and found that:1,2

  • Amongst employed carers for adults with schizophrenia, there was an increase in missed work time (12.4% vs. 5.6%) and sick time while at work (29.9% vs 17.5%) and overall work impairment (35.0% vs. 20.7%) compared with those who do not have caregiver responsibilities (non-caregivers)
  • Greater work productivity impairments resulted in carers of adults with schizophrenia incurring higher estimated costs than non-caregivers. On average, employed caregivers for adults with schizophrenia were estimated to incur approximately €2,800 more in indirect costs (missed work time and sick time while at work) than non-caregivers (€6,667 versus €3,795)
  • Caring for an adult with schizophrenia has a significant impact on daily activities and increased the number of visits to healthcare providers (8.0 vs. 5.7) – including hospitalisation – compared with non-caregivers
  • Caregivers of adults with schizophrenia reported worse health status and were more likely to experience comorbidities than both non?caregivers and caregivers of adults with other conditions

“These data demonstrate that people caring for a loved one with schizophrenia are in a particularly vulnerable position, risking their own mental and physical well-being in doing so,” said Kevin Jones, Secretary General, European Federation of Associations for Families of People with Mental Illness (EUFAMI). “The findings call for better family and social support systems, which may help reduce the burden for carers of adults with schizophrenia.”

These real-world data were extracted from the 2013 Kantar and Wellness Survey, which represent the largest healthcare database of projectable, self-reported, ‘real-world’ information, covering more than 165 therapeutic conditions and one million respondents from France, , , Spain and the UK. Out of 62,000 appropriate respondents, 157 reported that they cared for an adult with schizophrenia.

These findings add to the growing which shows that the European region has a long way to go before people with mental illness and their family caregivers are adequately supported and truly integrated into their communities. The newly published Mental Health Integration Index, sponsored by Janssen and undertaken by the Economist Unit, uncovers an implementation gap between the many examples of policy initiatives aimed at integrating those with mental illness into society and employment, and what is currently the case.3

Kevin Jones added: “The Mental Health Integration Index shows us that in many cases, caregivers are feeling the burden of inadequate government funding of community mental health services. Whilst most caregivers would not want to give up the care of their loved one, they must be supported and empowered so that their responsibilities do not prevent them from holding down a job, being involved in their communities, and maintaining their own physical and mental health.”

To explore the results of the Index in full, visit the Mental Health Hub at: www.mentalhealthintegration.com

About the studies

Data were obtained from the 2010, 2011 and 2013 Kantar Health EU5 (France, Germany, Italy, Spain, UK) National Health and Wellness Survey (NHWS), an online questionnaire that is representative of the total adult population (18+ years). Respondents reported if they provided care for another adult with schizophrenia and information regarding respondents’ demographics and health history characteristics were gathered.

Among the respondents, 398 were identified as caregivers for adults with schizophrenia. Caregivers for adults with schizophrenia were matched to non-caregivers (n=158,989) and other caregivers (n=14,341) on baseline characteristics (sociodemographics, BMI, comorbidity status) via propensity scores (1:2). The average age of caregivers was 45.3 years, 59.6% were female and 52.5% were currently employed, whilst 14.8% reported an annual household income of €50,000/£40,000 or greater.


1. Gupta S et al. Productivity loss and resource utilization in individuals providing care for adults with schizophrenia in the 5EU. Presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Annual European Congress, Amsterdam, The Netherlands, 08 – 12 November 2014. Poster number PMH22

2. Gupta S et al. Describing the health status of schizophrenia caregivers in the 5 EU. Presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Annual European Congress, Amsterdam, The Netherlands, 08 – 12 November 2014. Poster number PMH43

3. Economist Intelligence Unit, Mental Health and Integration. Provision for supporting people with mental illness: A comparison of 30 European countries. Available at: www.mentalhealthintegration.com/media/whitepaper/EIU-Janssen_Mental_Health.pdf Last accessed October 2014

Source: Janssen Pharmaceutica NV