A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative

A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative
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DOI:
10.1136/annrheumdis-2014-205207
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发表时间:
2014-06-01
影响因子:
27.4
通讯作者:
Kvien, Tore K.
Kvien, Tore K.
中科院分区:
医学1区
文献类型:
--
作者:
Gossec, Laure;de Wit, Maarten;Kvien, Tore K.

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目的是制定一份问卷,可以用来计算从患者角度反映银屑病关节炎(PsA)影响的评分:PsA影响疾病(PsAID)问卷。方法12位患者研究伙伴确定了重要领域(卫生领域);139例患者按重要性排序。开发了数字评定量表(NRS)问题,每个领域一个。为了将这些域合并成一个评分,根据474名PsA患者给出的相对重要性确定相对权重。在13个国家进行了一项国际横断面和纵向验证研究,以检查PsAID评分与其他PsA或一般疾病指标的相关性。在两个亚组患者中检查了重测信度和反应性(治疗改变后3个月)。结果编制了两份PsAID问卷,包括生理和心理两个领域:一份用于临床实践(12个健康领域),一份用于临床试验(9个领域)。疼痛、疲劳和皮肤问题的相对重要性最高。PsAID评分与患者总体评价相关性良好(N=474, Spearman r=0.82-0.84),稳定患者的可靠性较高(N=88,类内相关系数=0.94-0.95),对变化的敏感性也可以接受(N=71,标准化反应平均值=0.90-0.91)。结论本研究开发并验证了PsA对患者生活影响的调查问卷。问卷有两个版本,一个用于临床实践(PsAID-12),一个用于临床试验(PsAID-9)。PsAID问卷可以更好地评估患者对PsA的看法。需要进一步验证。
Introduction The objective was to develop a questionnaire that can be used to calculate a score reflecting the impact of psoriatic arthritis (PsA) from the patients' perspective: the PsA Impact of Disease (PsAID) questionnaire.Methods Twelve patient research partners identified important domains (areas of health); 139 patients prioritised them according to importance. Numeric rating scale (NRS) questions were developed, one for each domain. To combine the domains into a single score, relative weights were determined based on the relative importance given by 474 patients with PsA. An international cross-sectional and longitudinal validation study was performed in 13 countries to examine correlations of the PsAID score with other PsA or generic disease measures. Test-retest reliability and responsiveness (3 months after a treatment change) were examined in two subsets of patients.Results Two PsAID questionnaires were developed with both physical and psychological domains: one for clinical practice (12 domains of health) and one for clinical trials (nine domains). Pain, fatigue and skin problems had the highest relative importance. The PsAID scores correlated well with patient global assessment (N=474, Spearman r=0.82-0.84), reliability was high in stable patients (N=88, intraclass correlation coefficient=0.94-0.95), and sensitivity to change was also acceptable (N=71, standardised response mean=0.90-0.91).Conclusions A questionnaire to assess the impact of PsA on patients' lives has been developed and validated. Two versions of the questionnaire are available, one for clinical practice (PsAID-12) and one for clinical trials (PsAID-9). The PsAID questionnaires should allow better assessment of the patient's perspective in PsA. Further validation is needed.