HRQOL Impacts of Illness on Family and Caregivers

描述（由申请人提供）：在公共卫生和医学领域，有越来越多的证据表明，疾病通过传染、压力和焦虑相关的疾病以及护理负担影响到患者个人以外的人。在阿尔茨海默病和癌症、新生儿筛查以及吸烟或肥胖等健康行为的研究中，都可以看到这种影响。很明显，无论是在临床层面还是在卫生政策层面，医疗干预和卫生保健计划在制定对疾病的反应时，都应该考虑到患者的家庭成员和周围的其他人。拟议的研究将系统地探索疾病对周围个体的影响，并将研究准确测量这种影响的方法，以纳入决策。该研究的目的是通过确定疾病影响周围个体健康相关生活质量的方式，并确定衡量这种影响的最佳方法，以纳入卫生政策决策，从而改善患者和家庭的福祉。这项拟议中的研究将结合可公开获取的国家级健康和生活质量数据，以及对大量美国成年人进行的在线调查，以确定疾病是否会“溢出”影响到患者的父母、配偶和家庭成员。该研究还将探讨为病人提供治疗如何影响生活质量，以及这种作用如何根据照顾者与病人的关系而不同地影响照顾者。一个特别的重点将放在探索具体的测量技术，以提供数据的经济评估卫生计划和干预措施，特别是成本效益分析。成本效益分析评估一个项目或干预措施相对于成本所产生的收益。如果像本文所建议的那样，广泛考虑预防或治疗的好处，比如对整个家庭而不仅仅是病人个人，那么关于干预价值的结论可能会有所不同。拟议的研究将调查衡量疾病如何影响家庭成员的不同方法，包括非常具体的方法，如何评估福利的价值，例如，是否有人真的有生病的孩子或配偶，或者更确切地说，是有人在考虑这种情况的假设，这是成本效益分析的惯例。这项研究将遵循用于进行这类评估的传统技术，以确保研究结果为分析人员、研究人员和决策者提供信息。这项工作将有助于国家人口研究所改善个人和家庭的健康和生活质量的使命。了解疾病如何影响整个家庭和家庭中的个人，以及如何表达这种影响并将其传达给他人，将有助于为所有患病的个人提供最佳护理，并根据大多数人的最大利益做出决定。这项研究符合国家生态研究所的使命，并将促进研究所的实质性和方法学目标。

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.