Background: 

The 24-question Early-Onset Scoliosis Questionnaire (EOSQ-24) is a proxy measure assessing health-related quality of life (HRQoL) among patients with early-onset scoliosis (EOS). There exists an increasing need to assess HRQoL through a child’s own perspective, particularly for older children and adolescents with EOS. The purpose of this study was to develop and validate a self-reported questionnaire, the Early-Onset Scoliosis Self-Report Questionnaire (EOSQ-SELF), to assess HRQoL in older children and adolescents with EOS.

Methods: 

A literature review, an expert focus group, and patient interviews were used to generate a preliminary survey of appropriate domains and question items. This survey was provided to English-speaking patients with EOS who were 8 to 18 years of age and capable of answering survey questions. Content validity was assessed for clarity and relevance of questions. Confirmatory factors analysis was performed to reduce the number of items and determine domains that fit items. Reliability was evaluated by measuring the internal consistency of items and test-retest reliability. Construct validity was evaluated by convergent, discriminant, and known-group validity.

Results: 

The literature review, expert focus group, and patient interviews identified 59 questions in 14 domains. Psychometric analysis reduced these to 30 questions across 12 domains: General Health, Pain/Discomfort, Pulmonary Function, Transfer, Physical Function/Daily Living, Participation, Fatigue/Energy Level, Sleep, Appearance, Relationships, Emotion, and Satisfaction. The final questionnaire was found to have good content and construct validity and adequate reliability.

Conclusions: 

The EOSQ-SELF is a valid and reliable instrument for measuring self-reported HRQoL among older children and adolescents with EOS (ages 8 to 18 years). This will serve as an important research outcome measure and enhance clinical care by providing a better understanding of HRQoL for these patients.

Level of Evidence: 

Diagnostic Level II. See Instructions for Authors for a complete description of levels of evidence.

中文翻译：

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早发性脊柱侧弯大龄儿童和青少年健康相关生活质量测量的开发和验证：早发性脊柱侧弯自我报告问卷 (EOSQ-SELF)

背景： 

包含 24 个问题的早发性脊柱侧凸问卷 (EOSQ-24) 是评估早发性脊柱侧凸 (EOS) 患者健康相关生活质量 (HRQoL) 的替代指标。越来越需要从儿童自身的角度评估 HRQoL，特别是对于患有 EOS 的年龄较大的儿童和青少年。本研究的目的是开发和验证一份自我报告的问卷，即早发性脊柱侧弯自我报告问卷 (EOSQ-SELF)，以评估患有 EOS 的大龄儿童和青少年的 HRQoL。

方法： 

文献回顾、专家焦点小组和患者访谈被用来对适当的领域和问题项目进行初步调查。这项调查是为 8 至 18 岁且能够回答调查问题的讲英语的 EOS 患者提供的。内容有效性被评估为问题的清晰度和相关性。进行验证性因素分析以减少项目数量并确定适合项目的域。通过测量项目的内部一致性和重测信度来评估信度。结构效度通过收敛效度、判别效度和已知组效度进行评估。

结果： 

文献回顾、专家焦点小组和患者访谈确定了 14 个领域的 59 个问题。心理测量分析将这些问题减少到 12 个领域的 30 个问题：一般健康、疼痛/不适、肺功能、转移、身体功能/日常生活、参与、疲劳/能量水平、睡眠、外表、人际关系、情绪和满意度。最终的问卷被认为具有良好的内容和结构效度和足够的信度。

结论： 

EOSQ-SELF 是一种有效且可靠的工具，用于测量患有 EOS 的大龄儿童和青少年（8 至 18 岁）自我报告的 HRQoL。这将作为一项重要的研究成果衡量标准，并通过更好地了解这些患者的 HRQoL 来加强临床护理。

证据等级： 

诊断二级。有关证据级别的完整描述，请参见作者说明。