Feeding Tube Use Among Persons with Advanced Dementia

描述（由申请人提供）：晚期痴呆症是一种影响老年人生活的疾病;其中许多人住在疗养院。随着最终的疾病轨迹通常涉及吞咽困难，体重减轻和复发性吸入性肺炎，晚期痴呆患者越来越多地接受经皮内窥镜胃管治疗，尽管有证据表明它们可能不是这些人的有效治疗方法。有一个10倍的差异，各州之间的差异和养老院之间的喂养管（FT）的使用率为这组体弱的老人。在规模较大、城市、营利性和缺乏特殊痴呆症护理单位的设施中，他们的使用率较高。知情的偏好和关于FT插入的决策的作用尚不清楚，尽管几项研究发现，DNR订单与FT呈负相关（在个人和设施层面）。需要进行研究，以更好地了解越来越多的使用和设施的变化，在FT使用的决定因素，特别是政策，报销，病人的喜好和决策因素的作用。这项多方法研究将分析来自50个州的管理数据，沿着与6个州的晚期痴呆症死者家属的结构化和深入访谈，以解决以下具体目标：1）描述晚期痴呆症疗养院居民使用FT的自然史; 2）检查与首次插入FT相关的个人、设施和市场因素; 3）检查个人，设施和市场因素与FT使用率随着时间的推移在美国养老院的变化率; 4）评估在6个州的FT使用率高和低的共同决策的作用;和5）检查丧失亲人的家庭成员的看法和满意度在使用FT的地理区域的临终关怀。来自自动记录在线调查认证的最小数据集、医疗保险索赔和设施数据将合并到居住历史文件中，以检查初始FT插入、重新插入和移除以及纵向分析的模式和预测因素。对丧亲家庭成员的调查将检查对临终关怀的看法、满意度以及不同地理区域的决策过程，这些地理区域在使用饲管方面各不相同。所获得的知识将用于告知公共政策和制定设施干预措施，以确保FT插入严重认知障碍的人是道德上适当的。

DESCRIPTION (provided by applicant): Advanced dementia is a life-defining illness affecting elderly persons; many of whom reside in nursing homes. With a final disease trajectory that typically involves difficulty swallowing, weight loss, and recurrent aspiration pneumonias, persons with advanced dementia are increasing receiving percutaneous endoscopic gastronomy tubes, despite evidence suggesting that they may not be an effective treatment for these individuals. There is a ten-fold difference across states and variation across nursing homes in the rate of feeding tubes (FT) use for this group of frail elders. Their use is higher in facilities which are larger, urban, for-profit and lacking special dementia care units. The role of informed preferences and decision-making about FT insertion is unclear, although several studies found that having a DNR order was negatively associated (at individual and facility level) with having a FT. Research is needed to better understand the determinants of the increasing use and facility variation in FT use, especially the role of policy, reimbursement, patient preferences and decision-making factors. This multi-method study will analyze administrative data from 50 states, along with structured and in-depth interviews with family members of decedents with advance dementia in 6 states to address the following specific aims: 1) Describe the natural history of FT use in nursing home residents with advanced dementia; 2) Examine individual, facility and market factors associated with the initial insertion of FTs; 3) Examine individual, facility, and market factors associated with the changing rates of FT use over time in US nursing homes; 4) Assess the role of shared decision making in 6 states with high and low rate of FT utilization; and 5) Examine bereaved family member perceptions and satisfaction with end of life care in geographic regions that vary in the use of FTs. Minimum Data Set, Medicare claims, and facility data from the On-Line Survey Certification of Automated Records will be merged into a residential history file to examine the pattern and predictors of initial FT insertion, re-insertion and removal and in longitudinal analyses. A survey of bereaved family members will examine perceptions, satisfaction with end-of-life care, and the process of decision making across geographic regions that vary in the use of feeding tubes. Knowledge gained will be used to inform public policy and formulate facility interventions to ensure that FT insertion in persons with severe cognitive impairment is ethically appropriate.