欧洲自闭症检测过程满意度的决定因素：来自ASDEU研究的结果

作者：

Guillon,Q (Guillon,Quentin)  ; Baduel,S (Baduel,Sophie) ; BejaranoMartín,A(Bejarano-Martin, Alvaro) ; CanalBedia,R (CanalBedia,Ricardo) ; MaganMaganto,M (Magan-Maganto, Maria) 等；

摘要：

Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015-2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of the level of satisfaction. These findings highlight the aspects of the process that need to be improved to enhance the experience of the detection process and are therefore relevant to guide health administrations toward actions to be implemented to this effect. Lay abstract Professional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one’s own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent-professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.

利用来自欧盟自闭症谱系障碍（2015-2018年）网络的数据，调查了对自闭症检测过程的满意度及其决定因素。共有1342名家庭成员参与了在线调查，其中包括1278名家长，收集了有关他们对孩子早期自闭症检测经验和满意度的信息。总体而言，满意度水平在不同受访者之间差异较大。发现与较低满意度相关的个体经历包括难以获取有关检测服务的信息，首次担忧时缺乏专业指导和支持，自行找到诊断服务以及确认担忧后与专家首次预约之间延迟超过4个月等。通过支配分析方法，我们进一步确定了首次担忧时的专业指导和支持是满意度水平的最重要预测因素。这些发现凸显了需要改进的检测过程方面，并因此与指导卫生管理部门朝着实施相应行动相关。简明摘要对于自闭症早期检测过程的满意度水平，首次担忧时的专业指导和支持似乎是一个重要的预测因素。在这项研究中，我们分析了1342名家庭成员（包括1278名家长）的观点，他们完成了一个在线调查表格，收集了有关他们对孩子早期自闭症检测的经验和满意度的信息。具体来说，我们感兴趣的是特定的检测过程经历如何与满意度相关，并且是否能够确定重要的满意度预测因素。检测过程是一个情感上充满挑战的时期，常常被描述为痛苦、混乱和漫长。了解他们的经历对于采取适当的行动以改善检测过程至关重要。在我们的样本中，对检测过程的满意度水平在不同受访者之间差异很大。在我们考虑的不同经历中，受访者是否在首次担忧时获得了专业指导和支持解释了大部分这种差异。我们还发现，难以获取有关检测服务的信息、首次担忧时缺乏专业指导和支持、自行找到诊断服务以及确认担忧后与专家首次预约之间的延迟都与更大的不满意可能性相关。这项研究的发现突显了家长与专业人员关系在检测过程中的重要性，并对于卫生管理部门改进检测过程具有重要的实践意义。