Informal caregiver burden in advanced cancer: Economic and health outcomes

晚期癌症的非正式护理人员负担：经济和健康结果

• 批准号: 9132203
• 负责人: Robin K Matsuyama
• 金额: $ 76.83万
• 依托单位: TEMPLE UNIV OF THE COMMONWEALTH
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2020-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9132203
• 关键词: Adult; Advanced Malignant Neoplasm; Affect; Cancer Patient; Caregiver Burden; Caregivers; Caring; Cessation of life; Cohort Studies; Complex; Continuity of Patient Care; Data; Day Care; Diagnostic Neoplasm Staging; Disease; Distress; Economics; Emotional; Employment; Enteral Feeding; Family; Financial Support; Goals; Health; Health Care Costs; Health system; Home environment; Hour; Income; Instruction; Insurance Carriers; Interview; Left; Length of Stay; Life; Life Experience; Malignant Neoplasms; Mental Health; Methodology; Outcome; Palliative Care; Patient Care; Patients; Persons; Population; Quality of life; Research; Resources; Self Care; Services; Shoulder; Site; Solid Neoplasm; Stress; Structure; Surveys; System; Time; Uninsured Medical Expense; United States; Ventilator; caregiving; cost; diaries; economic cost; economic outcome; end of life; experience; health care service utilization; health economics; informal caregiver; longitudinal design; physical conditioning; prospective; skills; social

 DESCRIPTION (provided by applicant): As health systems and insurers emphasize increased system efficiencies and reduced hospital days, the responsibility of care for cancer patients is shifting to informal caregivers (CGs) in the home. An estimated 4 million CGs spend an average of 8 hours per day providing care for adults with cancer in the United States. Caregiving includes emotional support, financial assistance, and personal care, as well as coordination of services and skilled nursing6-10. Negative effects include emotional, social and financial disruptions and lessened quality of life and intensify as a cancer patient approaches death. Current research does not fully describe the extensive range of care provided by CGs, how care changes as disease progresses, and whether and when care needs exceed CGs' skills and emotional and financial resources. High subjective burden, such as stress and distress, has been documented for CGs. However, little is known about CGs' objective burden in this population, specifically number and hours of CG tasks and scope and intensity of tasks. This proposed study would be the first to comprehensively examine the lived experiences of CGs of PTs with advanced solid tumor cancers. To accomplish this, the multi-site cohort study will employ a prospective, longitudinal design that will follow CGs of PTs with life limiting cancer for up to 12 months or until 1 month after PT death. Data will be collected bi-weekly and in-person from CGs in their homes using qualitative interviews, quantitative surveys, CG diaries, and structured observation. The overall goal of this study is to understand CG objective burden, a key and understudied contributor to overall CG burden and how it affects both health and economic outcomes of CGs and to identify potentially modifiable factors impacting CG overall burden.

 描述(由申请人提供)：随着医疗系统和保险公司强调提高系统效率和减少住院天数，照顾癌症患者的责任正在转移到家中的非正式照顾者(CG)身上。据估计，在美国，有400万CG平均每天花费8小时为患有癌症的成年人提供护理。照料包括情感支持、经济援助和个人护理，以及协调服务和熟练护理6-10。负面影响包括情绪、社会和经济中断以及生活质量下降，并随着癌症患者接近死亡而加剧。目前的研究没有完全描述CGs提供的广泛护理范围，护理如何随着疾病的进展而变化，以及护理需求是否以及何时超过CGs的技能和情感和财政资源。高主观负担，如压力和痛苦，已被记录为CGs。然而，关于CG在这一人群中的客观负担，特别是CG任务的数量和小时数以及任务的范围和强度，人们知之甚少。这项拟议的研究将是第一次全面检查晚期实体瘤患者的CG生活经历。为了实现这一目标，这项多部位队列研究将采用前瞻性纵向设计，跟踪生命受限癌症患者的CGS治疗。 最多12个月，或直到PT死亡后1个月。将通过定性访谈、定量调查、CG日记和结构化观察，每两周一次面对面地从CG家中收集数据。这项研究的总体目标是了解CG客观负担，这是总体CG负担的关键和未被研究的因素，以及它如何影响CG的健康和经济结果，并确定影响CG总体负担的潜在可修改因素。