HRQOL Impacts of Illness on Family and Caregivers

描述(申请人提供)：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个人以外的人。这种影响已经在阿尔茨海默氏症和癌症的研究、新生儿筛查以及吸烟或肥胖等健康行为中看到。显然，医疗干预和卫生保健计划在制定对疾病的反应时，无论是在临床层面上还是在卫生政策中，都应该考虑到患者的家庭成员和其他人。这项拟议的研究将系统地探索疾病对周围个人的影响，并将探索准确衡量这种影响的方法，以便纳入决策。这项研究的目标是通过确定疾病对周围个人与健康相关的生活质量的影响的方式，并确定衡量这种影响的最佳方式，以便将其纳入卫生政策决策，从而改善患者和家庭的福祉。这项拟议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的在线调查，来确定疾病是否会“蔓延”到患病个人的父母、配偶和家庭成员。这项研究还将探索为患病个人提供照顾如何影响生活质量，以及这种角色如何根据他们与患病个人的关系而对照顾者产生不同的影响。将特别强调探索具体的测量技术，为卫生项目和干预措施的经济评估提供数据，特别是成本效益分析。成本效益分析评估项目或干预措施相对于成本的收益。如果像这里建议的那样，广泛地考虑预防或治疗的好处，例如对整个家庭，而不仅仅是对患病的个人，那么关于干预的价值的结论可能会不同。这项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，是由假设性地考虑这种情况的人评估，这是成本效益分析的惯例。这项研究将遵循进行这类评估的传统技术，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NINR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该家庭中的个人，以及如何表达这种影响并将其传达给其他人，将有助于为所有与疾病有关的个人提供最佳护理，并做出符合大多数人最佳利益的决定。这项研究与NINR的使命是一致的，并将推进研究所的实质性和方法学目标。 公共卫生相关性：这项研究解决了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的疾病的影响。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，以便在决策中考虑它们。这项研究的最终目标是扩大健康的定义，以包括家庭或家庭一级的重点，而不是个人一级的重点，并从这一角度考虑公共卫生干预。

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.