BACKGROUND End stage kidney disease and hemodialysis dependence are associated with impairments in health-related quality of life (HRQOL), which may be related to vascular access (VA). Few HRQOL measures are VA-specific and none differentiate HRQOL impact by VA type. We developed a VA-targeted HRQOL measure to distinguish the impact of fistulas, grafts and catheters. METHODS We created an initial item pool based on literature review and then conducted focus groups at 4 US sites with 37 adults and interviews with nine dialysis clinicians about VA's impact on HRQOL. We then drafted the Hemodialysis Access-Related Quality of Life (HARQ) measure and cognitively tested it with 17 hemodialysis patients. Focus group and cognitive interview participants were diverse in age, gender, years on dialysis, and VA. RESULTS We identified six domains for the HARQ: symptoms, physical functioning, emotional impacts, social and role functioning, sleep, and care-related burdens. Cognitive interviews indicated that items were easily understood and supported content validity. Attributing HRQOL impact to VA as opposed to other hemodialysis burden was challenging for some items. Some items were dropped that were considered redundant by patients, limitations while dressing was added, and reference to VA-specific impact was included for each item. The average Flesch-Kincaid reading grade level for the revised 47-item HARQ was 5.3. CONCLUSIONS The HARQ features VA-specific content not addressed in other HRQOL measures, making it ideal for comparisons of different VA types and new VA technologies. The psychometric properties of the HARQ will be evaluated in future research.

中文翻译：

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血液透析患者中​​血管通路特定的健康相关生活质量影响：血液透析通路相关生活质量（HARQ）仪器的定性开发。


背景终末期肾病和血液透析依赖与健康相关生活质量（HRQOL）受损有关，这可能与血管通路（VA）有关。很少有 HRQOL 测量是针对 VA 的，并且没有区分 VA 类型对 HRQOL 的影响。我们开发了一种针对 VA 的 HRQOL 测量方法，以区分瘘管、移植物和导管的影响。方法 我们根据文献综述创建了一个初始项目库，然后在美国 4 个地点对 37 名成年人进行了焦点小组讨论，并就 VA 对 HRQOL 的影响采访了 9 名透析临床医生。然后，我们起草了血液透析接入相关生活质量 (HARQ) 衡量标准，并对 17 名血液透析患者进行了认知测试。焦点小组和认知访谈参与者的年龄、性别、透析年限和退伍军人管理局各不相同。结果 我们确定了 HARQ 的六个领域：症状、身体功能、情绪影响、社会和角色功能、睡眠和护理相关负担。认知访谈表明项目易于理解并支持内容有效性。对于某些项目而言，将 HRQOL 影响归因于 VA 而不是其他血液透析负担是具有挑战性的。一些被患者认为多余的项目被删除，增加了敷料时的限制，并且每个项目都包含了对 VA 特定影响的参考。修订后的 47 项 HARQ 的平均 Flesch-Kincaid 阅读等级为 5.3。结论 HARQ 具有其他 HRQOL 衡量标准中未提及的 VA 特定内容，使其成为比较不同 VA 类型和新 VA 技术的理想选择。 HARQ 的心理测量特性将在未来的研究中进行评估。