Feeding Tube Use Among Persons with Advanced Dementia

描述(申请人提供)：晚期痴呆症是一种影响老年人一生的疾病；他们中的许多人住在疗养院。随着最终的疾病轨迹通常涉及吞咽困难、体重减轻和反复发作的吸入性肺炎，晚期痴呆症患者接受经皮内窥镜胃管治疗的人数正在增加，尽管有证据表明它们可能对这些人不是有效的治疗方法。在这群虚弱的老年人中，不同州和不同疗养院的喂养管(FT)使用率存在十倍的差异。在规模更大、城市、营利性和缺乏特殊痴呆症护理单元的设施中，它们的使用率更高。关于FT插入的知情偏好和决策的作用尚不清楚，尽管几项研究发现，拥有DNR订单与拥有FT呈负相关(在个人和设施层面)。需要进行研究，以更好地了解金融时报使用量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50个州的行政数据，以及对6个州晚期痴呆症患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的自然历史；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使用率高和低的6个州的作用；以及5)在FTs使用情况不同的地理区域，检查失去亲人的家庭成员对临终关怀的看法和满意度。来自自动记录在线调查认证的最小数据集、联邦医疗保险索赔和设施数据将被合并到住宅历史文件中，以检查初始FT插入、重新插入和移除的模式和预测因素以及纵向分析。一项针对失去亲人的家庭成员的调查将检查人们对临终关怀的看法、对临终关怀的满意度，以及不同地理区域对喂养管使用的不同决策过程。所获得的知识将被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在道德上是合适的。

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.