HRQOL Impacts of Illness on Family and Caregivers

HRQOL 疾病对家庭和护理人员的影响

• 批准号: 7846354
• 负责人: Eve Wittenberg
• 金额: $ 47.58万
• 依托单位: BRANDEIS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-29 至 2012-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7846354
• 关键词: Address; Adult; Affect; Alzheimer' s Disease; Anxiety; Area; Caregivers; Caring; Child; Chronic; Chronic Disease; Clinical; Cost Effectiveness Analysis; Data; Data Sources; Decision Making; Disease; Effectiveness of Interventions; Ensure; Evaluation; Expenditure; Family; Family Caregiver; Family member; Goals; Health; Health Policy; Health behavior; Healthcare; Household; Household and Family; Illness impact; Individual; Institutes; Internet; Intervention; Investigation; K-Series Research Career Programs; Measurement; Measures; Medical; Medicine; Methodology; Methods; Mission; Neonatal Screening; Obesity; Outcome Measure; Parents; Patients; Persons; Policies; Policy Maker; Prevention; Principal Investigator; Public Health; Quality of life; Quality-Adjusted Life Years; Relative (related person); Research; Research Personnel; Role; Sampling; Screening for cancer; Severities; Smoking; Source; Spouses; Stress; Surveys; System; Techniques; Thinking; Work; base; burden of illness; care burden; care delivery; caregiving; contagion; cost; cost effectiveness; cost utility analysis; design; economic evaluation; experience; health definition; health related quality of life; improved; innovation; insight; instrument; interest; intervention program; member; programs; public health relevance; response

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.

描述（由申请人提供）：通过传染，与压力和焦虑相关的疾病以及护理负担，疾病在公共卫生和医学方面有越来越多的证据。在阿尔茨海默氏病和癌症，新生儿筛查以及诸如吸烟或肥胖等健康行为的研究中已经看到了这种影响。显然，医疗干预措施和医疗保健计划应考虑在临床或卫生政策中发展对疾病的反应时患者周围的家庭成员和其他人。拟议的研究将系统地探索疾病对周围个体的影响，并将研究如何准确衡量这种效果以纳入决策。该研究的目的是通过确定疾病影响周围个人健康相关的生活质量的方式来改善患者和家庭的福祉，并确定衡量这种影响以纳入健康政策决策的最佳方法。拟议的研究将结合公开访问的有关健康和生活质量的国家水平数据，以及对美国大部分成年人的在线调查，以确定疾病是否“溢出”以影响父母，配偶和病人的家庭成员。这项研究还将探讨如何为生病的人提供影响的生活质量，以及这种角色如何根据与疾病个体的关系对接受者的影响不同。将特别强调探索特定的测量技术，以提供用于健康计划和干预措施的经济评估的数据，尤其是成本效益分析。成本效益分析评估计划或干预相对于成本所产生的收益。如果在此处提出的预防或治疗的益处（例如整个家庭而不仅仅是病人），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，包括非常针对福利的方法，例如他们是否被实际上有生病或配偶的人估值，或者是由假设思考这种情况的人进行成本效益分析的公约。该研究将遵循用于进行此类评估的常规技术，以确保研究结果对分析师，研究人员和政策制定者提供信息。这项工作将有助于NINR的使命，以改善个人和家庭的健康和生活质量。了解疾病如何影响该家庭中的整个家庭和个人，以及如何表达这种影响并与他人交流，将有助于为参与疾病的所有个人提供最佳护理，并最大程度地为最大利益做出决定。这项研究与NINR的使命一致，并将促进该研究所的实质性和方法论目标。 公共卫生相关性：这项研究解决了经常被忽视的健康领域，周围的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，以便可以在决策中考虑它们。这项研究的最终目标是将健康的定义扩展到包括家庭或家庭层面的重点，而不是个人级别的关注点，并从这个角度考虑公共卫生干预措施。