Acromegaly Quality of Life Questionnaire (AcroQoL).
Acromegaly Quality of Life Questionnaire (AcroQoL).
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DOI：
10.1186/1477-7525-2-13
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发表时间：
2004-02-27
影响因子：
3.6
通讯作者：
Lara, Nuria
中科院分区：
文献类型：
--
作者：
Badia, Xavier;Webb, Susan M;Lara, Nuria
肢端肥大症是一种慢性疾病，对患者的健康相关生活质量有重要影响。有效测量健康相关生活质量的能力对于描述疾病或治疗对患者的影响至关重要，因此为肢端肥大症制定疾病特异性问卷的重要性。研究采用不同的资料来源：首先通过文献检索来确定描述肢端肥大症对患者生活质量影响的相关文献，其次是由10位内分泌科专家确定影响HRQOL的主要领域，第三是对肢端肥大症患者进行了10次深入的半结构化访谈，以确定与肢端肥大症对患者生活的自我感知影响相关的领域和条目。经过适当的定性分析，得到了38个项目的初步问卷。Rasch分析以最终的22个项目的问卷结束。使用标准程序(Cronbach‘s Alpha和项目-总相关)对最终问卷的测量属性(效度和可靠性)进行测试和比较。对项目参数的评价证实了新工具的结构效度。在西班牙，对32名患有肢端肥大症的活动性疾病患者进行了小样本的变化反应性评估，这些患者接受了AcroQOL和一般问卷EuroQol 5-D的测试。结果表明，AcroQOL各维度与EQ-5D的视觉类比评分(VAS)呈显著正相关。AcroQOL的全球得分的改善与EQ-5D的VAS的全球改善有关。按照目前推荐的标准方法，西班牙调查问卷被翻译成其他11种语文。
Acromegaly is a chronic disease with an important impact on patients, Health Related Quality of Life (HRQoL). The ability to effectively measure Health Related Quality of Life is central to describing the impacts of disease or treatment upon the patient, therefore the importance of having a disease specific questionnaire for acromegaly. For the development of the AcroQoL questionnaire different sources of information were used: first a literature search was performed to identify relevant papers describing the impact of acromegaly in HRQoL, second the main domains of impact on HRQoL were identified by 10 experts endocrinologists, and third ten in-depth semi-structured interviews were conducted in acromegalic patients to identify domains and items related to the self-perceived impact of acromegaly in patients' life. After a proper qualitative analysis a preliminary 38 item questionnaire was obtained. Rasch analysis concluded with a final 22 item questionnaire. The measurement properties (validity and reliability) of the resulting final questionnaire were tested and compared using standard procedures (Cronbach's Alpha and item-total correlation). The evaluation of the item parameters confirmed the construct validity of the new instrument. Responsiveness to change was assessed in a small sample of 32 acromegalic patients with active disease in Spain who were administered the AcroQoL and the generic questionnaire EuroQoL 5-D. The results showed a statistically significant relationship between all the dimensions of AcroQoL and the VAS (visual analogic scale) of EQ-5D. An improvement in the global score of AcroQoL was related to a global improvement in the VAS of the EQ-5D. Following the current recommended standard methodology the Spanish questionnaire was translated into eleven other languages.