Autistic self‐advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well‐constructed National Institutes of Health Patient‐Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery—Lifespan (PAB‐L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5–13 (through parent proxy), teens 14–17 (parent proxy and self‐report), and adults 18–65 (self‐report) with autism compared to the general population. Participants and parent informants (N = 912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB‐L online. Results indicate that compared to general population norms, people with autism of all ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB‐L appears to be a feasible and acceptable method for assessing patient‐reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970‐987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc.

中文翻译：

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自闭症谱系患者报告结果和生活质量的寿命方法。

自闭症自我倡导者、家庭成员和社区组织呼吁更加重视提高自闭症患者的生活质量 (QoL)。这样做对于了解生活质量如何在整个生命过程中展开以及澄清性别是否影响自闭症患者的生活质量、健康和功能至关重要。本研究的目的是使用免费提供且构建良好的美国国立卫生研究院患者报告结果测量信息系统 (PROMIS) 来策划和测试寿命 QoL 测量工具。为了开发 PROMIS 自闭症电池寿命 (PAB-L)，我们确定了与自闭症相关的 PROMIS 量表，审查了每个项目，咨询了自闭症专家小组，并征求了自闭症患者和家庭成员的反馈。该电池组提供了 5-13 岁儿童（通过父母代理）、14-17 岁青少年（父母代理和自我报告）和 18-65 岁自闭症成年人（自我报告）与一般人群相比的生活质量综合画像. 参与者和家长线人（N = 912）通过一家儿童医院和美国全国自闭症研究登记处招募，在线完成了 PAB-L。结果表明，与一般人群标准相比，所有年龄段的自闭症患者（或其代理人）报告的结果不太理想，并且所有领域的 QoL 都较低。与患有自闭症的男性和男孩相比，女性和女孩在某些领域面临更大的挑战。PAB-L 似乎是一种可行且可接受的方法，用于评估自闭症患者在整个生命过程中报告的结果和生活质量。自闭症研究2020，13：970-987。© 2020 国际自闭症研究协会，Wiley Periodicals, Inc.