Feeding Tube Use Among Persons with Advanced Dementia

描述（由申请人提供）：晚期痴呆症是影响老年人的一种决定生命的疾病；他们中的许多人住在养老院。晚期痴呆患者的最终病程通常包括吞咽困难、体重减轻和复发性吸入性肺炎，因此越来越多的患者接受经皮内窥镜胃管治疗，尽管有证据表明这对这些患者可能不是一种有效的治疗方法。对于这群体弱多病的老年人来说，不同的州和不同的疗养院在饲管使用率上有十倍的差异。在较大的、城市的、营利性的、缺乏特殊痴呆症护理单位的设施中，它们的使用率更高。尽管一些研究发现（在个人和机构层面）有DNR订单与有FT呈负相关，但关于FT插入的知情偏好和决策的作用尚不清楚。需要进行研究以更好地了解FT使用增加和设施变化的决定因素，特别是政策，报销，患者偏好和决策因素的作用。这项多方法研究将分析来自50个州的行政数据，并对6个州的晚期痴呆症患者的家属进行结构化和深度访谈，以实现以下具体目标：1)描述老年痴呆症患者在养老院使用FT的自然历史；2)检查与初始ft插入相关的个人、设施和市场因素；3)检查与美国养老院FT使用率随时间变化相关的个人、设施和市场因素；4)评估共享决策在FT利用率高、低6个州的作用；5)在使用临终关怀的地理区域中，研究丧失亲人的家庭成员对临终关怀的认知和满意度。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一个居住历史文件中，以检查初始FT插入、重新插入和移除的模式和预测因素，并进行纵向分析。一项对丧失亲人的家庭成员的调查将检查不同地理区域在使用喂食管方面的看法、对临终关怀的满意度和决策过程。所获得的知识将用于为公共政策提供信息，并制定设施干预措施，以确保在严重认知障碍患者中植入FT在道德上是适当的。

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.