HRQOL Impacts of Illness on Family and Caregivers

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DESCRIPTION (provided by applicant): There is mounting evidence in public health and medicine that illness affects people beyond the individual patient, through contagion, stress and anxiety-related illnesses, and the burden of care taking. Such effects have been seen in studies of Alzheimer's disease and cancer, screening of newborns, and with health behaviors such as smoking or obesity. It is clear that medical interventions and health care programs should consider family members and others surrounding the patient when developing a response to illness, whether on the clinical level or in health policy. The proposed research will systematically explore the effect of illness on surrounding individuals, and will investigate ways to accurately measure this effect for inclusion in decision making. The goal of the research is to improve the well being of patients and families by determining the ways in which illness affects the health related quality of life of surrounding individuals and identifying optimal ways to measure this effect for inclusion in health policy decision making. The proposed study will use a combination of publicly-accessible, national-level data on health and quality of life, and an on-line survey of a large sample of US adults to determine whether illness "spills over" to affect parents, spouses and family members of ill individuals. The study will also explore how providing taking for an ill individual affects quality of life, and how this role affects care takers differently depending on their relationship to the ill individual. A particular emphasis will be placed on exploring specific measurement techniques to provide data for economic evaluation of health programs and interventions, and particularly cost-effectiveness analysis. Cost-effectiveness analysis assesses the benefits accrued by a program or intervention relative to the costs. If benefits of prevention or treatment are considered broadly as proposed here, such as to the entire family instead of just the ill individual, conclusions about the value of an intervention might be different. The proposed study will investigate different methods of measuring how illness affects family members, including methods very specific to how benefits are valued such as whether they are valued by someone who actually has a sick child or spouse or rather by someone who is thinking hypothetically about such a situation which is the convention for cost-effectiveness analyses. The research will follow conventional techniques used to conduct these types of evaluations to ensure that the research results are informative to analysts, researchers and policy makers. This work will contribute to the mission of NINR to improve the health and quality of life of individuals and families. Understanding how illness affects an entire family and individuals within that family, and how to express that effect and communicate it to others, will assist in providing optimal care to all individuals involved in an illness and to make decisions in the best interests of the most. This research is consistent with the mission of NINR and will advance the Institute's substantive and methodological goals. PUBLIC HEALTH RELEVANCE: This research addresses an area of health often overlooked, how people surrounding an ill individual are affected by that person's illness. Our study will consider how illness affects parents, spouses, and family members, and how to accurately measure these effects so that they can be considered in decisions. The ultimate goal of this research is to expand the definition of health to include a family or household-level focus rather than an individual-level one, and to consider public health interventions from this perspective.