HRQOL Impacts of Illness on Family and Caregivers

描述（由申请人提供）：公共卫生和医学领域越来越多的证据表明，疾病通过传染、压力和焦虑相关疾病以及护理负担，对患者以外的其他人产生影响。这种影响已经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发现。显然，医疗干预和医疗保健计划在制定疾病应对措施时，无论是在临床层面还是在卫生政策中，都应考虑患者的家庭成员和其他人。拟议的研究将系统地探讨疾病对周围个体的影响，并将研究如何准确衡量这种影响以纳入决策。该研究的目标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。拟议的研究将结合公开的国家级健康和生活质量数据以及对美国成年人的大量样本进行的在线调查，以确定疾病是否“蔓延”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照顾如何影响生活质量，以及这种角色如何根据照顾者与病人的关系而对他们产生不同的影响。将特别强调探索具体的测量技术，为卫生规划和干预措施的经济评估，特别是成本效益分析提供数据。成本效益分析评估项目或干预措施相对于成本所产生的效益。如果按照此处提出的那样广泛考虑预防或治疗的益处，例如对整个家庭而不仅仅是患病个体，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，包括非常具体的如何评估福利的方法，例如是否由实际有生病的孩子或配偶的人评估，或者更确切地说，由假设考虑这种情况的人评估，这是成本效益分析的惯例。该研究将遵循用于进行此类评估的传统技术，以确保研究结果为分析师、研究人员和政策制定者提供信息。这项工作将有助于实现 NINR 改善个人和家庭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其他人，将有助于为所有患有疾病的个人提供最佳护理，并做出最符合最大利益的决定。这项研究与 NINR 的使命一致，并将推进该研究所的实质性和方法论目标。 公共卫生相关性：这项研究涉及一个经常被忽视的健康领域，即病人周围的人如何受到该人疾病的影响。我们的研究将考虑疾病如何影响父母、配偶和家庭成员，以及如何准确衡量这些影响，以便在决策时予以考虑。这项研究的最终目标是扩大健康的定义，将家庭或家庭层面的关注点包括在内，而不是个人层面的关注点，并从这个角度考虑公共卫生干预措施。

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.