Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks
Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks
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DOI：
10.1186/s12955-014-0125-0
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发表时间：
2014-08-22
影响因子：
3.6
通讯作者：
Hassell, Kathryn L.
中科院分区：
文献类型：
--
作者：
Keller, San D.;Yang, Manshu;Hassell, Kathryn L.
背景：医疗服务提供者和患者呼吁更好地了解镰状细胞病 (SCD) 成人患者的医疗保健需求，并确定需要一种系统、可靠且有效的方法来记录成人 SCD 护理的患者报告结果 (PRO)。为了满足这一需求，成人镰状细胞生活质量测量系统 (ASCQ-Me) 旨在补充患者报告结果测量信息系统 (PROMIS (R))。在这里，我们描述了 ASCQ-Me 项目库 (IB) 心理测量评估的方法和结果。方法：在美国境内七个分布于各地的诊所，556 名患者回答了为评估 SCD 的认知、情感、身体和社会影响而产生的问题。我们使用探索性因素分析（EFA）、平行分析（PA）和双因素分析（项目反应理论分级反应模型，IRT-GRM）评估了假设域的结构有效性。我们使用 IRT-GRM 和 Wald 方法来识别跨性别和年龄的反应偏差。我们使用 IRT 和 Cronbach α 系数来评估 IB 的可靠性，然后测试基于 IRT 校准的汇总分数区分由 SCD 严重程度定义的受访者三分位数的能力。 结果：在测试的 140 个原始问题中，我们排除了 48 个问题，这些问题要么没有形成干净的因子，要么在按年龄和性别定义的亚组中提供了有偏差的测量。通过 EFA 和 PA，我们确定了身体影响中的三个子因素：睡眠、疼痛和僵硬影响。对由此产生的六个项目集（SCD 的睡眠、疼痛、僵硬、认知、情感和社会影响）的分析支持了它们基本的一维性。除了认知影响 IB 之外，这些项目集在广泛的数值范围内也高度可靠，并且与 SCD 疾病严重程度高度显着相关。结论：ASCQ-Me 疼痛、睡眠、僵硬、情绪和社交 SCD 影响 IB 使用现代和经典的心理测量评估方法表现出出色的测量特性。需要进一步开发 IB 的认知影响，以提高其对 SCD 疾病严重程度差异的敏感性。未来的研究将评估 ASCQ-Me IB 对由于健康干预而导致的 SCD 疾病严重程度随时间变化的敏感性。
Background: Providers and patients have called for improved understanding of the health care requirements of adults with sickle cell disease (SCD) and have identified the need for a systematic, reliable and valid method to document the patient-reported outcomes (PRO) of adult SCD care. To address this need, the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me) was designed to complement the Patient Reported Outcome Measurement Information System (PROMIS (R)). Here we describe methods and results of the psychometric evaluation of ASCQ-Me item banks (IBs).Methods: At seven geographically-disbursed clinics within the US, 556 patients responded to questions generated to assess cognitive, emotional, physical and social impacts of SCD. We evaluated the construct validity of the hypothesized domains using exploratory factor analysis (EFA), parallel analysis (PA), and bi-factor analysis (Item Response Theory Graded Response Model, IRT-GRM). We used IRT-GRM and the Wald method to identify bias in responses across gender and age. We used IRT and Cronbach's alpha coefficient to evaluate the reliability of the IBs and then tested the ability of summary scores based on IRT calibrations to discriminate among tertiles of respondents defined by SCD severity.Results: Of the original 140 questions tested, we eliminated 48 that either did not form clean factors or provided biased measurement across subgroups defined by age and gender. Via EFA and PA, we identified three subfactors within physical impact: sleep, pain and stiffness impacts. Analysis of the resulting six item sets (sleep, pain, stiffness, cognitive, emotional and social impacts of SCD) supported their essential unidimensionality. With the exception of the cognitive impact IB, these item sets also were highly reliable across a broad range of values and highly significantly related to SCD disease severity.Conclusion: ASCQ-Me pain, sleep, stiffness, emotional and social SCD impact IBs demonstrated exceptional measurement properties using modern and classical psychometric methods of evaluation. Further development of the cognitive impact IB is required to improve its sensitivity to differences in SCD disease severity. Future research will evaluate the sensitivity of the ASCQ-Me IBs to change in SCD disease severity over time due to health interventions.