Development of a Goal Attainment Scale (GAS) outcome measure for clinical interventional studies in paediatric autism.

IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL
Autism Pub Date : 2025-06-25 DOI:10.1177/13623613251349904
Hannah Staunton, Tammy McIver, Julian Tillmann, Susanne Clinch, Vivienne Hanrahan, Bethany Ewens, Caroline Averius, Alexandra I Barsdorf, Aurelie Baranger, Elizabeth Berry Kravis, Tony Charman, Haraldt Neerland, Alison T Singer, Pamela Ventola, Zackary Jk Williams, Louise Barrett
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引用次数: 0

Abstract

Existing clinical outcome assessments (COAs) have limitations in capturing treatment effects in autism for those who chose to enrol in clinical research. Some COAs include items that are not relevant or equally important to all autistic people; others are not sufficiently comprehensive. Goal Attainment Scaling (GAS), which measures individual experiences against personalised goals, has been proposed as a more individualised and change-sensitive approach to assess outcomes in clinical studies. We developed a novel GAS measure for use in paediatric autism studies based on qualitative interviews with autistic adolescents, parents and clinicians. Applying a methodologically robust approach, concept elicitation interviews (N = 40) were first conducted to understand and generate a bank of personalised goals, followed by cognitive debriefing interviews (N = 39) to provide feedback on a draft GAS manual. Twenty-five personalised goals were generated for core autistic characteristics (communication, socialisation, restrictive and repetitive behaviours), as well as associated characteristics and impacts. In debriefing interviews, adolescents and parents supported the use of personalised goals and clinicians recommended using such goals in clinical studies and practice. In conclusion, GAS measures may overcome some of the challenges with existing outcome measures and complement future outcome measurement strategies for clinical studies in paediatric autism.Lay AbstractAutistic children and adolescents and their parents support the use of personalised goals as a way of measuring the effects of new treatments for those who chose to enrol in clinical research. Health professionals also recommend using personalised goals in both their research and in treatment plans. Establishing personalised goals, a process known as Goal Attainment Scaling (GAS), means identifying goals according to the needs of the individual, as opposed to using standardised outcomes for all participants. Autism is a condition with many different characteristics and degrees of impact, and the tools commonly used to measure treatment effects, known as clinical outcome assessments (COAs), have limitations. Some COAs, for example, include outcomes that are not relevant to all autistic people; others do not include enough outcomes to represent the experience of all autistic people. GAS, which measures individual experiences against personalised goals, may be complementary to existing COAs to provide an individualised or tailor-made tool to evaluate outcomes as a result of an intervention. We developed a GAS measure for researchers/health professionals to use in studies with autistic children and adolescents. Our research was based on a total of 40 interviews with adolescents, parents and clinicians, asking open-ended questions about how children and adolescents experience autism in order to understand and create a bank of potential personalised goals. We then conducted 39 further interviews to ask them for their feedback on the first draft of the measure. In the end, we compiled a list of 25 personalised goals related to core and associated characteristics of autistic children and adolescents, including goals related to communication, socialisation, and restricted and repetitive behaviours. We hope that these findings will help to improve the measurement of meaningful outcomes for autistic children and adolescents in future studies.

儿童自闭症临床干预研究目标实现量表(GAS)结果测量的发展。
现有的临床结果评估(COAs)在捕捉那些选择参加临床研究的自闭症患者的治疗效果方面存在局限性。一些coa包含的项目并非与所有自闭症患者相关或同等重要;其他的则不够全面。目标实现量表(GAS)是一种针对个性化目标来衡量个人经历的方法,已被提议作为一种更加个性化和变化敏感的方法来评估临床研究的结果。基于对自闭症青少年、父母和临床医生的定性访谈,我们开发了一种用于儿科自闭症研究的新型GAS测量方法。采用方法学上稳健的方法,首先进行概念启发访谈(N = 40),以了解并生成个性化目标库,然后进行认知汇报访谈(N = 39),以提供对GAS手册草案的反馈。针对核心自闭症特征(沟通、社交、限制性和重复性行为)以及相关特征和影响,制定了25个个性化目标。在汇报访谈中,青少年和家长支持使用个性化目标,临床医生建议在临床研究和实践中使用这些目标。总之,气体测量可以克服现有结果测量的一些挑战,并补充未来儿童自闭症临床研究的结果测量策略。【摘要】自闭症儿童和青少年及其父母支持使用个性化目标作为衡量新疗法对那些选择参加临床研究的人的影响的一种方式。卫生专业人员还建议在他们的研究和治疗计划中使用个性化目标。建立个性化目标,这一过程被称为目标实现缩放(GAS),意味着根据个人需求确定目标,而不是对所有参与者使用标准化的结果。自闭症是一种具有许多不同特征和影响程度的疾病,通常用于衡量治疗效果的工具,即临床结果评估(COAs),具有局限性。例如,一些coa包括与所有自闭症患者无关的结果;其他的没有包括足够的结果来代表所有自闭症患者的经历。GAS根据个人目标衡量个人经历,可以作为现有coa的补充,提供个性化或量身定制的工具来评估干预结果。我们为研究人员/卫生专业人员开发了一种用于自闭症儿童和青少年研究的GAS测量方法。我们的研究基于对青少年、父母和临床医生的总共40次访谈,询问关于儿童和青少年如何经历自闭症的开放式问题,以了解和创建一个潜在的个性化目标库。然后,我们进行了39次进一步的访谈,询问他们对该措施初稿的反馈。最后,我们列出了25个与自闭症儿童和青少年的核心和相关特征相关的个性化目标,包括与沟通、社交、限制和重复行为相关的目标。我们希望这些发现将有助于在未来的研究中改善对自闭症儿童和青少年有意义的结果的测量。
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来源期刊
Autism
Autism PSYCHOLOGY, DEVELOPMENTAL-
CiteScore
9.80
自引率
11.50%
发文量
160
期刊介绍: Autism is a major, peer-reviewed, international journal, published 8 times a year, publishing research of direct and practical relevance to help improve the quality of life for individuals with autism or autism-related disorders. It is interdisciplinary in nature, focusing on research in many areas, including: intervention; diagnosis; training; education; translational issues related to neuroscience, medical and genetic issues of practical import; psychological processes; evaluation of particular therapies; quality of life; family needs; and epidemiological research. Autism provides a major international forum for peer-reviewed research of direct and practical relevance to improving the quality of life for individuals with autism or autism-related disorders. The journal''s success and popularity reflect the recent worldwide growth in the research and understanding of autistic spectrum disorders, and the consequent impact on the provision of treatment and care. Autism is interdisciplinary in nature, focusing on evaluative research in all areas, including: intervention, diagnosis, training, education, neuroscience, psychological processes, evaluation of particular therapies, quality of life issues, family issues and family services, medical and genetic issues, epidemiological research.
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