Measuring Quality of Life in Children With Early Onset Scoliosis: Development and Initial Validation of the Early Onset Scoliosis Questionnaire
Measuring Quality of Life in Children With Early Onset Scoliosis: Development and Initial Validation of the Early Onset Scoliosis Questionnaire
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DOI：
10.1097/bpo.0b013e3182093f9f
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发表时间：
2011-03-01
影响因子：
1.7
通讯作者：
Vitale, Michael G.
中科院分区：
文献类型：
--
作者：
Corona, Jacqueline;Matsumoto, Hiroko;Vitale, Michael G.
背景：治疗儿童早发性脊柱侧凸（EOS）旨在改善自然病史和健康相关的生活质量（QOL）。鉴于该人群的年轻、合并症和异质性，QOL测量提出了重大挑战。本研究的目的是开发一种疾病的具体措施，反映EOS患者和照顾者的重要性问题，是响应临床和治疗的变化。方法：回顾文献和相关措施通知半结构化定性访谈的发展。通过框架技术对EOS患者照顾者的访谈进行解释。创建了一个75个项目的主列表，并在5分Likert量表上对响应进行了缩放。结果：内容效度检验显示8个条目的内容效度指数较低（<0.70），其中10个条目的内容效度指数较低（< 0.70），其余条目的内容效度指数较高（< 0.70）。项目分布分析显示19个项目呈偏态分布。条目信度显示领域内存在冗余条目（r >= 0.5）。结构效度显示出独特的领域测量感兴趣的问题。由此产生的早发性脊柱侧凸问卷（EOSQ）包括13个领域的33个项目：一般健康，疼痛，身体功能，肺功能，日常生活，疲劳，情绪，手术关注，满意度，转移，经济负担，父母负担，和治疗outcomes.Conclusions：EOSQ反映了EOS人群的生活质量和照顾者负担。EOSQ将扩大这一独特人群的结局评估选项。
Background: Treatment of children with early onset scoliosis (EOS) seeks to improve natural history and health related quality of life (QOL). QOL measurement presents a significant challenge given the young age, comorbidities, and heterogeneity of this population. The purpose of this study is to develop a disease specific measure reflecting issues of importance to EOS patients and caretakers that is responsive to clinical and treatment changes.Methods: Review of the literature and relevant measures informed development of semistructured qualitative interviews. Interviews of caregivers of EOS patients were interpreted through the framework technique. A masterlist of 75 items was created and responses were scaled on a 5-point Likert scale. Psychometric analysis was carried out to group items into domains, to maintain score distribution, to create a responsive instrument, and to identify question redundancy.Results: Content validation showed 8 items with low content validity indices (< 0.70). Item distribution analysis showed 19 items with skewed distribution. Item reliability showed redundant items within domains (r >= 0.5). Construct validity showed unique domains measuring intended issues of interest. The resulting Early Onset Scoliosis Questionnaire (EOSQ) includes 33 items in 13 domains: General Health, Pain, Physical Function, Pulmonary Function, Daily Living, Fatigue, Emotion, Surgical Concerns, Satisfaction, Transfer, Financial Burden, Parental Burden, and Treatment Outcomes.Conclusions: The EOSQ reflects QOL and caregiver burden in the EOS population. The EOSQ will expand options for outcome assessment in this unique population.