Therapeutic decisions in ALS patients: cross-cultural differences and clinical implications
Therapeutic decisions in ALS patients: cross-cultural differences and clinical implications
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DOI：
10.1007/s00415-018-8861-4
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发表时间：
2018-07-01
影响因子：
6
通讯作者：
Lule, Dorothee
中科院分区：
文献类型：
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作者：
Andersen, Peter M.;Kuzma-Kozakiewicz, Magdalena;Lule, Dorothee
肌萎缩侧索硬化症（ALS）中不同社会文化背景下治疗选择决策的定量分析在一项前瞻性跨文化研究（www.NEEDSinALS.com）中，在德国（n = 83）、波兰（n = 83）和瑞典（n = 78）连续招募ALS患者（n = 244）。他们接受了采访的治疗技术，包括有创（IV）和无创通气（NIV），以及经皮内镜胃造口术（PEG）和假设终止这些使用定量问题的偏好。使用标准化的问卷，宗教信仰，个人价值观，生活质量和抑郁进行了评估。NIV在德国和PEG在瑞典最常用。瑞典患者在开始和终止PEG、NIV和IV时最自由。波兰患者大多未决定，最不可能考虑停止支持性治疗。目前的使用部分与年龄，性别和身体功能状态有关;此外，财政支持解释了一些差异。从患者的角度来看，未来对治疗方案的偏好也与文化因素密切相关。更倾向于传统和保守的价值观，患者不太可能决定侵入性治疗设备（IV，PEG），最不可能有想法停止任何设备，更有可能有一个未定的态度。对于未来的考虑，其他因素，如文化背景是至关重要的，产生的障碍，在实施先进的指令在多元文化的环境中被视为。
Quantitative analysis of decision-making on therapeutic options in different sociocultural context in amyotrophic lateral sclerosis (ALS).ALS patients (n = 244) were consecutively recruited in Germany (n = 83), Poland (n = 83), and Sweden (n = 78) in a prospective cross-cultural study (www.NEEDSinALS.com). They were interviewed on preferences for therapeutic techniques including invasive (IV) and non-invasive ventilation (NIV), as well as percutaneous endoscopic gastrostomy (PEG) and on hypothetical termination of these using quantitative questions. Using standardized questionnaires, religiousness, personal values, quality of life, and depressiveness were assessed.NIV was most frequently used in Germany and PEG in Sweden. Swedish patients were most liberal on initiation and termination of PEG, NIV and IV. Polish patients were mostly undecided and were least likely to consider discontinuing supportive management. Current use was partly associated with age, gender and state of physical function; also, financial support explained some variance. Future preferences on therapeutic options from the patient's perspective were also closely associated with cultural factors. The more oriented towards traditional and conservative values, the less likely patients were to decide for invasive therapeutic devices (IV, PEG), the least likely to have ideations to discontinue any device and the more likely to have an undecided attitude.Current use of therapeutic options is determined by medical condition in analogy to clinical guidelines. For future considerations, other factors such as cultural background are crucial, yielding hurdles to be regarded in the implementation of advanced directives in a multicultural environment.