Schizophrenia caregivers – realizing the impact

Schizophrenia is a debilitating condition that makes it difficult for patients to perform routine daily tasks or hold a job. The impairments caused by schizophrenia’s symptoms require caregivers to be more heavily involved in patients’ day-to-day activities. While the effects of schizophrenia on patients are well known, the burden of caring for these patients has not been quantified in Europe, making it difficult to empower caregivers and provide adequate support for them.


The extent and impact of caring for a patient
with schizophrenia is not well-known.


To quantify this burden we leveraged data from our National Health and Wellness Survey (NHWS) to profile schizophrenia caregivers and compare their health outcomes to non-caregivers as well as those caring for patients with other conditions.

Those caring for patients with schizophrenia
have significantly decreased mental health.

download white paper buttonAcross many dimensions, NHWS data showed that those caring for adults with schizophrenia experienced worse health outcomes compared with non-caregivers or those caring for patients with other conditions. The greatest difference among the respondent groups was seen in mental health, with caregivers for patients with schizophrenia reporting significantly lower rates of mental quality of life as measured by the Mental Component Summary from the SF-36v2, a general health quality of life validated instrument. In addition, schizophrenia caregivers were more likely than non-caregivers to experience stress-related comorbidities, including insomnia, headaches/migraines, anxiety and depression. Schizophrenia caregivers also reported a higher level of problems with daily activities than non-caregivers and those caring for patients with other conditions.

In spite of the poor health outcomes often experienced by those caring for adults with schizophrenia, our research indicated that they feel positively about providing care. When asked about their views on providing care for schizophrenia patients, overall reactions were more positive than negative, with more than half of caregivers indicating that providing care was important to them and they wanted to care for the patient. In spite of their willingness to provide care, many also commented that they had inadequate support and financial resources to provide the level of care needed.

Overall, caregivers want to care for patients with schizophrenia,
but lack adequate financial resources and support.

Clearly, caregivers for schizophrenia feel that providing quality care is important and strive to do their best, but there is a gap in the support they’re receiving from family members and from the community, echoing a lack of awareness and needed integration of patients and caregivers in society. For deeper insights into this important health issue, download our white paper. Further information regarding this study can be found in the two peer-reviewed manuscripts below:

  1. Gupta S, Isherwood G, Jones K, Van Impe K. Assessing health status in informal schizophrenia caregivers compared with health status in non-caregivers and caregivers of other conditions. BMC Psychiatry. 2015 Jul 21;15(1):162.
  2. Gupta S, Isherwood G, Jones K, Van Impe K. Productivity loss and resource utilization, and associated indirect and direct costs in individuals providing care for adults with schizophrenia in the EU5. Clinicoecon Outcomes Res. 2015;7:593-602.

*2010, 2011 and 2013 surveys



If you would like a free copy of our white paper, “Schizophrenia: Bringing the Burden of Care into the Spotlight”, please fill out the form below. You will receive an email link to download your copy. We promise never to share your information with any third party.


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The New Decision Analysis Guidance from ISPOR: How it is Like HouseHunters

‘Multiple criteria decision analysis’ is a crummy name for a great concept (aren’t all big decisions analyzed using multiple criteria?). MCDA means assessing alternatives while simultaneously considering several objectives. It’s a useful way to look at difficult healthcare choices. But oftentimes, results of these analyses aren’t communicated clearly, limiting their usefulness.

ISPOR, the International Society For Pharmacoeconomics and Outcomes Research, has developed new MCDA guidance, available in the latest issue of Value for Health (paywall). To be sure, healthcare decision makers have always weighed medical, social, and economic factors: MCDA helps stakeholders bring concrete choices and transparency to the process of evaluating outcomes research – where as we know, controversy is always a possibility.

Anyone can use MCDA. To put it mildly, it’s difficult to balance saving lives with saving money. Fundamentally, MCDA means listing options, defining decision criteria, weighting those criteria, and then scoring each option. Some experts build complex economic models, but anyone can apply this decision technique in effective, less rigorous ways.

You know those checklists at the end of every HouseHunters episode where people weigh location and size against budget? That’s essentially it: Making important decisions, applying judgment, and balancing multiple goals (raise the kids in the city or the burbs?) – and even though they start out by ranking priorities, once buyers see their actual options, deciding on a house becomes substantially more complex.

MCDA gains traction in health economics. As shown in the diagram (source: ISPOR), the analysis hinges on assigning relative weights to individual decision criteria. While this brings rationality and transparency to complex decisions, it also invites passionate discussions. Some might expect these techniques to remove human judgment from the process, but MCDA leaves it front and center.

Looking for new ways to communicate health economics research and other medical evidence? Register now for the 2nd annual HEOR Writing workshop in March.

Pros and cons. Let’s not kid ourselves: You have to optimize on something. MCDA is both beautiful and terrifying because it forces us to identify tradeoffs: Quality, quick improvement, long-term health benefits? Uncertain outcomes only complicate things further. One of the downsides is that, upon seeing elaborate projections and models, people can become over-confident in the numbers. Uncertainty is never fully recognized or quantified. (Recall the Rumsfeldian unknown unknown.) Sensitivity analysis is essential, to illustrate which predicted outcomes are strongly influenced by small adjustments.

Communicating the results. MCDA is a great way to bring interdisciplinary groups into a conversation. But because it is so complex, it’s essential that the analysis be communicated effectively, so stakeholders understand the choices being made. At a minimum, this should include straightforward charts or tables identifying the decision criteria, showing how they’re weighted, and summarizing analytical results – bringing us back to the HouseHunters Wish List/Checklist. (If you’re new to HEOR writing, don’t miss this fantastic lineup of medical writers and HEOR experts.)

Resources to learn more. If you want to try MCDA, pick up one of the classic texts, such as Smart Choices: A Practical Guide to Making Better Decisions. The ISPOR report is Multiple Criteria Decision Analysis for Health Care Decision Making – An Introduction: Report 1 of the ISPOR MCDA Emerging Good Practices Task Force by Thokala et al. Additionally, ISPOR’s members offer useful insights into the pluses and minuses of this methodology – see, for example, Does the Future Belong to MCDA? The level of discourse over this guidance illustrates how challenging healthcare decisions have become.

Tracy Altman is the founder of Ugly Research. She’ll be presenting at the HEOR Writing Workshop on communicating value messages clearly with data, March 17-18 in Philadelphia.


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