目的:自闭症社区将生活质量(QoL)确定为临床和研究重点。研究人员有责任确保用于测量QoL的仪器在自闭症参与者中如此可靠和准确。
方法:我们的研究评估了情绪困扰的测量不变性(抑郁症,焦虑,愤怒,心理压力)和主观幸福感(生活满意度,积极的影响,和含义与目的)自闭症患者(N=140,每量表=132-140)和普通人群(N=1,224,每量表=406-411)的患者报告结果测量信息系统(PROMIS)的量表青少年(14-17岁)。这些量表包含在PROMIS自闭症电池寿命中,它使用PROMIS量表来测量与自闭症患者最相关的QoL域。
结果:使用排列测试的多组验证性因素分析表明,抑郁和积极情感量表在组间表现出标量不变性,这表明可以在自闭症和普通人群青少年之间进行有意义的比较。愤怒和心理压力量表显示了组间的度量不变性,表明这些量表在两组中测量相同的潜在特征,但不支持组比较。
结论:我们提供有关如何将这些量表用于心理测量支持的方式来捕获与理解自闭症青少年QoL相关的结构的指导。
生活质量是自闭症患者及其家庭的重要结果。然而,许多生活质量量表尚未经过测试,以确保它们能够准确衡量自闭症患者的生活质量。重要的是要确保生活质量措施在自闭症人群中同样有效。我们研究的目的是测试是否以常见的生活质量测量量表-患者报告的结果测量信息系统(PROMIS)-以相同的方式测量自闭症和普通人群青少年的生活质量。我们发现,某些PROMIS量表对自闭症和普通人群青少年的作用方式相同,而另一些则不然。这些结果有助于研究人员自信地使用PROMIS量表来衡量自闭症青年生活质量的不同方面。
OBJECTIVE: Quality of life (QoL) is identified as a clinical and research priority by the autistic community. Researchers have the responsibility to ensure that instruments used to measure QoL do so reliably and accurately among autistic participants.
METHODS: Our study evaluated measurement invariance of Emotional Distress (Depression, Anxiety, Anger, Psychological Stress) and Subjective Well-Being (Life Satisfaction, Positive Affect, and Meaning & Purpose) scales of the Patient-Reported Outcomes Measurement Information System (PROMIS) among groups of autistic (N=140, n per scale=132-140) and general population (N=1,224, n per scale=406-411) teenagers (14-17 years). These scales were included in the PROMIS Autism Battery-Lifespan, which uses PROMIS scales to measure QoL domains most relevant for autistic people.
RESULTS: Multi-group confirmatory factor analyses using permutation tests demonstrated that Depression and Positive Affect scales exhibited scalar invariance between groups, indicating that scores can be meaningfully compared across autistic and general population teens. Anger and Psychological Stress scales demonstrated metric invariance between groups, indicating that these scales measure the same latent trait in both groups, but group comparisons are not supported.
CONCLUSIONS: We provide guidance as to how these scales can be used in psychometrically supported ways to capture constructs relevant for understanding QoL among autistic teens.
Quality of life is an important outcome for autistic people and their families. However, many quality of life scales have not been tested to make sure they accurately measure quality of life among autistic people. It is important to make sure that quality of life measures works similarly among the autistic population. The goal of our study is to test whether scales on a common quality of life measure – the Patient-Reported Outcomes Measurement Information System (PROMIS) – measures quality of life in the same way between autistic and general population adolescents. We found that some of the PROMIS scales worked the same way for autistic and general population adolescents and others did not. These results help researchers confidently use the PROMIS scales to measure different aspects of quality of life among autistic youth.