Cuesta-Gomez J L, Vidriales-Fernandez R, Carvajal-Molina F
Universidad de Burgos, Burgos, Espana.
Confederacion Autismo Espana, Madrid, Espana.
Rev Neurol. 2016;62 Suppl 1:S33-9.
The concept of quality of life is of great importance for interventions directed at people living with disabilities. It is undeniable that the achievement of a satisfactory quality of life should be the objective of clinical interventions that are directed at the group of people with autism spectrum disorder (ASD) and should be a key element in the design of the treatments that are needed to improve the prognosis of future development. Nevertheless, knowledge of both the objective and the subjective conditions that predict greater quality of life satisfaction in people with ASD is still very limited.
To explore the perception of the quality of life experienced by a group of children and adolescents with ASD without intellectual disability.
A sample of 12 children and 11 adolescents with ASD without intellectual disability. In accordance with their age, they were administered the corresponding quality of life questionnaires.
Both groups reported positively on their quality of life, without any differences in the basic dimensions. Nevertheless, in the case of adolescents, very low scores were obtained in the area of self-determination in comparison with their scores in other areas.
The discussion centers on the identification of the most relevant dimensions for quality of life, the implications for intervention, and the need to adapt the methodologies in use for the subjective evaluation of those factors, due to the characteristics of ASD that can affect the capabilities necessary for the evaluation of personal experience, and may require the adaptation of the procedures that are employed.
生活质量的概念对于针对残疾人士的干预措施至关重要。不可否认,实现令人满意的生活质量应是针对自闭症谱系障碍(ASD)人群的临床干预措施的目标,并且应是设计改善未来发展预后所需治疗方法的关键要素。然而,对于预测ASD患者更高生活质量满意度的客观和主观条件的了解仍然非常有限。
探讨一组无智力残疾的ASD儿童和青少年对生活质量的感知。
选取12名无智力残疾的ASD儿童和11名无智力残疾的ASD青少年作为样本。根据他们的年龄,给他们发放相应的生活质量问卷。
两组对自己的生活质量都给予了积极评价,在基本维度上没有差异。然而,就青少年而言,与其他领域的得分相比,他们在自主领域的得分非常低。
讨论集中在确定生活质量最相关的维度、干预的影响以及由于ASD的特征可能影响评估个人经历所需能力而需要调整用于这些因素主观评估的方法,并且可能需要调整所采用的程序。