Hellmann David B, Uhlfelder Misty L, Stone John H, Jenckes Mollie W, Cid Maria C, Guillevin Loic, Moreland Larry, Dellaripa Paul F, Hoffman Gary S, Merkel Peter A, Spiera Robert, Brown Lin, Hernández-Rodríguez José, Rubin Haya R
Johns Hopkins University School of Medicine, Hopkins Bayview Medical Center, 4940 Eastern Avenue, Baltimore, MD 21224, USA.
Arthritis Rheum. 2003 Dec 15;49(6):819-25. doi: 10.1002/art.11464.
To determine aspects of quality of life (QOL) important to people with giant cell arteritis (GCA).
We explored the domains of QOL affected by GCA in audiotaped focus groups. We then created an Importance Rating Questionnaire (IRQ) by constructing questions related to the domains most frequently mentioned. Of 214 GCA patients to whom the IRQ was sent, 145 (68%) responded. We calculated frequencies of responses and then ranked items by the proportion selecting the top category of importance and also according to a mean item rank. We compared the domains of QOL covered by the IRQ with those in the Short Form 12 (SF-12).
The highest rated QOL item was "losing sight in both eyes permanently." Of the top 20 items, 12 were in domains not covered directly by the SF-12.
We have identified aspects of QOL important to GCA patients. Assessment of QOL in GCA should include vision and other domains that are not included in standard QOL questionnaires.
确定对巨细胞动脉炎（GCA）患者重要的生活质量（QOL）方面。
我们在录音焦点小组中探讨了受GCA影响的QOL领域。然后，通过构建与最常提及的领域相关的问题，创建了一份重要性评分问卷（IRQ）。在向其发送IRQ的214名GCA患者中，145名（68%）做出了回应。我们计算了回答的频率，然后根据选择最高重要性类别的比例以及平均项目排名对项目进行排序。我们将IRQ涵盖的QOL领域与简短健康调查问卷12（SF - 12）中的领域进行了比较。
评分最高的QOL项目是“双眼永久失明”。在前20个项目中，有12个在SF - 12未直接涵盖的领域。
我们已经确定了对GCA患者重要的QOL方面。GCA患者QOL的评估应包括视力和标准QOL问卷未涵盖的其他领域。
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