ten Klooster Peter M, Vonkeman Harald E, Voshaar Martijn A H Oude, Bode Christina, van de Laar Mart A F J
Arthritis Center Twente, Department of Psychology, Health and Technology, University of Twente, PO Box 217, 7500 AE Enschede, The Netherlands.
Clin Rheumatol. 2014 Aug;33(8):1145-54. doi: 10.1007/s10067-013-2400-6.
Disability is a common problem in patients with gout. Recently, the Health Assessment Questionnaire Disability Index (HAQ-DI) was recommended for assessing patient reported activity limitations in gout. However, few studies have explored experiences and issues of disability from the perspective of gout patients themselves. The objectives of this study were to explore disability issues in patients with gout and to examine the content validity of the HAQ-DI in this patient group. Two studies were performed: a semi-structured interview study with seven male gout patients and a cross-sectional survey study among 34 other patients with gout. In both studies, specific examples of activity limitations were elicited using open-ended methods. The survey study additionally aimed to quantify the relevance of the activities listed in the HAQ-DI. Most patients experienced several gout attacks in the previous year. Limitations were reported to occur during a flare, but patients were generally not limited between attacks. During an attack, patients mainly experienced limitations related to mobility, especially walking and climbing stairs. Patients also mentioned limitations in activities related to domestic life, such as gardening and doing housework. Limitations related to self-care or activities requiring the use of the upper extremities were rarely mentioned. Corresponding HAQ-DI items were skewed towards very low disability scores over the past week. Assessments of gout-related disability should particularly focus on mobility and lower extremity functioning and should consider the intermittent nature of the disease. The HAQ-DI may not adequately meet these requirements, suggesting the need to explore other measures of gout-related disability
残疾是痛风患者的常见问题。最近，健康评估问卷残疾指数（HAQ-DI）被推荐用于评估痛风患者报告的活动受限情况。然而，很少有研究从痛风患者自身的角度探讨残疾的经历和问题。本研究的目的是探讨痛风患者的残疾问题，并检验HAQ-DI在该患者群体中的内容效度。进行了两项研究：一项对7名男性痛风患者的半结构式访谈研究，以及另一项对34名其他痛风患者的横断面调查研究。在两项研究中，均采用开放式方法引出活动受限的具体例子。调查研究还旨在量化HAQ-DI中列出的活动的相关性。大多数患者在前一年经历过几次痛风发作。据报告，在发作期间会出现活动受限，但患者在发作间期通常不受限。发作期间，患者主要经历与活动能力相关的受限，尤其是行走和爬楼梯。患者还提到了与家庭生活相关的活动受限，如园艺和做家务。很少提到与自我护理或需要使用上肢的活动相关的受限。在过去一周中，相应的HAQ-DI项目偏向于极低的残疾评分。对痛风相关残疾的评估应特别关注活动能力和下肢功能，并应考虑该疾病的间歇性特点。HAQ-DI可能无法充分满足这些要求，这表明需要探索其他痛风相关残疾的测量方法
