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


11 Nov 2014


Health & Consumers


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

Compared with their peers and other caregivers, carers for adults with schizophrenia report deteriorated physical and mental health and greater health resource usage/utilization

BEERSE, Belgium, 10 November 2014: Data presented today at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Annual European Congress, Amsterdam, 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 National Health 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, Germany, Italy, 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 body of evidence 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 Intelligence 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:



For further information please contact:

Matti Ojanen

Phone: +34 91 722 8079

Joanna Sullivan

Publicis Life Brands Resolute
Phone: +44 (0) 207 3977 485

Notes to editor

About the studies (1,2)

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.

About schizophrenia

Schizophrenia affects people from all countries, socio-economic groups and ethnic groups. Its prevalence is similar around the world – almost one person in every 100 will develop schizophrenia before they reach the age of 60, with men and women equally at risk. (4)

There is no single cause of schizophrenia. Different factors acting together are thought to contribute to the development of the illness. Both genetic and environmental factors seem to be important.5 The symptoms of schizophrenia can include hallucinations, delusions, lack of emotional response, social withdrawal/depression, apathy and a lack of drive or initiative.

While schizophrenia is a lifelong condition, there are treatments available that allow people with schizophrenia to get better. Clinical guidelines recommend that the optimal treatment package for people with schizophrenia is a combination of medication along with psychotherapy, psycho-education and self-help.6 Beyond simply controlling symptoms, effective treatment can enable people with schizophrenia to enjoy a more fulfilling life, which may include returning to work or study, independent living and social relationships, which in turn can aid their recovery.

For more information about schizophrenia, as well as helpful resources and interactive      tools  for     those affected       by      the       condition, visit

This site is sponsored by Janssen Pharmaceutica NV.


About Janssen Pharmaceutica NV

At Janssen, we are dedicated to addressing and solving some of the most important unmet medical needs of our time in neuroscience, oncology, immunology, infectious diseases and vaccines, and cardiovascular and metabolic diseases. Driven by our commitment to patients, we develop innovative products, services and healthcare solutions to help people with serious diseases throughout the world. Beyond its innovative medicines, Janssen Pharmaceutica NV and its affiliates worldwide are at the forefront of developing education and public policy initiatives to ensure patients and their families, caregivers, advocates and health care professionals have access to the latest treatment information, support services and quality care.

Please visit for more information.



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: Janssen_Mental_Health.pdf Last accessed October 2014

4. American Psychiatric Association (APA). Practice guideline for the treatment of patients with schizophrenia. Second edition 2004; 42

5. Lang et al. Molecular mechanisms of schizophrenia. Cellular Physiology and Biochemistry 2007; 20:687

6. National Institute for Health and Care Excellence. Psychosis and schizophrenia in adults: treatment and management. NICE clinical guideline 178. February 2014. Available at: schizophrenia-in-adults-treatment-and-management-pdf Last accessed October 2014.