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慢性难治性痛风患者的经历及其对健康相关生活质量的影响:文献综述与定性分析

Patient Experience with Chronic Refractory Gout and Its Impact on Health-Related Quality of Life: Literature Review and Qualitative Analysis.

作者信息

Strand Vibeke, Pillinger Michael H, Oladapo Abiola, Yousefian Charis, Brooks Dani, Kragh Nana

机构信息

Division of Immunology/Rheumatology, Stanford University School of Medicine, Palo Alto, CA, 94304, USA.

NYU Grossman School of Medicine, 550 First Avenue, New York City, NY, 10016, USA.

出版信息

Rheumatol Ther. 2024 Oct;11(5):1271-1290. doi: 10.1007/s40744-024-00697-8. Epub 2024 Aug 5.

Abstract

INTRODUCTION

Patients with chronic refractory gout face a considerable burden of disease due to unexpected flares characterized by severe and debilitating pain, which can lead to chronic pain and joint damage. This study aimed to understand the symptoms and impacts of chronic refractory gout on health-related quality of life (HRQoL).

METHODS

A targeted literature review was conducted to identify and review key articles describing the symptoms and impacts of gout, and articles examining the psychometric performance of the Medical Outcomes Survey Short Form-36 (SF-36) and Health Assessment Questionnaire-Disability Index (HAQ-DI) in gout. Qualitative interviews were conducted with 20 participants with chronic refractory gout. The results were used to develop the conceptual model and determine the appropriateness of the SF-36 and HAQ-DI in evaluating HRQoL in this population.

RESULTS

Most frequently reported symptoms included bodily pain (n = 18, 90.0%), joint swelling (n = 18, 90.0%), joint tenderness (n = 18, 90.0%), and joint pain (n = 16, 80.0%). Most frequently reported impacts were difficulties climbing a flight (n = 20, 100.0%) or several flights of stairs (n = 20, 100.0%), climbing five steps (n = 19, 95.0%), completing chores (n = 19, 95.0%), and running errands and shopping (n = 19, 95.0%). All assessed items from SF-36 and HAQ-DI were reported by ≥ 25% (n = 5) of participants and mapped sufficiently to concepts elicited by participants.

CONCLUSIONS

Patients with chronic refractory gout report symptoms and impacts that are highly bothersome and burdensome to everyday life. Items included in the HAQ-DI and SF-36 mapped directly to these symptoms and impacts and are relevant to understand the burden of disease of chronic refractory gout.

摘要

引言

慢性难治性痛风患者面临着相当大的疾病负担,因为意外发作的痛风会导致严重且使人衰弱的疼痛,进而可能引发慢性疼痛和关节损伤。本研究旨在了解慢性难治性痛风的症状及其对健康相关生活质量(HRQoL)的影响。

方法

进行了一项有针对性的文献综述,以识别和回顾描述痛风症状及影响的关键文章,以及研究医学结局调查简表-36(SF-36)和健康评估问卷-残疾指数(HAQ-DI)在痛风患者中的心理测量性能的文章。对20名慢性难治性痛风患者进行了定性访谈。研究结果用于构建概念模型,并确定SF-36和HAQ-DI在评估该人群HRQoL方面的适用性。

结果

最常报告的症状包括身体疼痛(n = 18,90.0%)、关节肿胀(n = 18,90.0%)、关节压痛(n = 18,90.0%)和关节疼痛(n = 16,80.0%)。最常报告的影响是爬一段楼梯(n = 20,100.0%)或几段楼梯(n = 20,100.0%)困难、爬五级台阶(n = 19,95.0%)、完成家务(n = 19,95.0%)以及跑腿和购物(n = 19,95.0%)。SF-36和HAQ-DI的所有评估项目均有≥25%(n = 5)的参与者报告,并与参与者提出的概念充分对应。

结论

慢性难治性痛风患者报告的症状及其影响对日常生活极为困扰且负担沉重。HAQ-DI和SF-36中的项目直接对应这些症状和影响,对于理解慢性难治性痛风的疾病负担具有相关性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/aca5/11422411/2a52b4d0811d/40744_2024_697_Fig1_HTML.jpg

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