Silveira Augusta, Gonçalves Joaquim, Sequeira Teresa, Ribeiro Cláudia, Lopes Carlos, Monteiro Eurico, Pimentel Francisco Luís
Universidade Fernando Pessoa, Centro de Estudos e Inverstigação em Saúde, Universidade de Coimbra, Coimbra, Portugal.
Acta Med Port. 2011 Dec;24 Suppl 2:347-54. Epub 2011 Dec 31.
Quality of Life is a distinct and important emerging health focus, guiding practice and research. The routine Quality of Life evaluation in clinical, economic, and epidemiological studies and in medical practice promises a better Quality of Life and improved health resources optimization. The use of information technology and a Knowledge Management System related to Quality of Life assessment is essential to routine clinical evaluation and can define a clinical research methodology that is more efficient and better organized. In this paper, a Validation Model using the Quality of Life informatics platform is presented. Portuguese PC-software using European Organization for Research and Treatment of Cancer questionnaires (EORTC-QLQ C30 and EORTC-H&N35), is compared with the original paper-pen approach in the Quality of Life monitoring of head and neck cancer patients. The Quality of Life informatics platform was designed specifically for this study with a simple and intuitive interface that ensures confidentiality while providing Quality of Life evaluation for all cancer patients. For the Validation Model, the sample selection was random. Fifty-four head and neck cancer patients completed 216 questionnaires (108 using the informatics platform and 108 using the original paper-pen approach) with a one-hour interval in between. Patient preferences and computer experience were registered. Quality of Life informatics platform showed high usability as a user-friendly tool. This informatics platform allows data collection by auto-reply, database construction, and statistical data analysis and also facilitates the automatic listing of the questionnaires. When comparing the approaches (Wilcoxon test by item, percentile distribution and Cronbach's alpha), most of the responses were similar. Most of the patients (53.6%) reported a preference for the software version. The Quality of Life informatics platform has revealed to be a powerful and effective tool, allowing a real time analysis of Quality of Life data. Computer-based quality-of-life monitoring in head and neck cancer patients is essential to get clinically meaningful data that can support clinical decisions, identify potential needs, and support a stepped-care model. This represents a fundamental step for routine Quality of Life implementation in the Oncology Portuguese Institute (IPO-Porto), ORL and C&P department services clinical practice. Finally, we propose a diagram of diagnostic performance, considerating the generalized lack of mycological diagnosis in Portugal, which emphasizes the need for a careful history, focused on quantifying the latency period.
生活质量是一个独特且重要的新兴健康关注点，指导着实践与研究。在临床、经济和流行病学研究以及医疗实践中进行常规生活质量评估有望带来更好的生活质量并改善健康资源优化。使用信息技术以及与生活质量评估相关的知识管理系统对于常规临床评估至关重要，并且可以定义一种更高效、组织更完善的临床研究方法。本文介绍了一种使用生活质量信息学平台的验证模型。将使用欧洲癌症研究与治疗组织问卷（EORTC - QLQ C30和EORTC - H&N35）的葡萄牙语PC软件与在头颈部癌症患者生活质量监测中使用的原始纸笔方法进行比较。生活质量信息学平台是专门为该研究设计的，具有简单直观的界面，在为所有癌症患者提供生活质量评估的同时确保保密性。对于验证模型，样本选择是随机的。54名头颈部癌症患者完成了216份问卷（108份使用信息学平台，108份使用原始纸笔方法），中间间隔一小时。记录了患者的偏好和计算机使用经验。生活质量信息学平台作为一个用户友好的工具显示出高可用性。这个信息学平台允许通过自动回复进行数据收集、数据库构建和统计数据分析，还便于问卷的自动列表。在比较这两种方法时（按项目进行威尔科克森检验、百分位数分布和克朗巴哈系数），大多数回答相似。大多数患者（53.6%）表示更喜欢软件版本。生活质量信息学平台已被证明是一个强大而有效的工具，能够对生活质量数据进行实时分析。对头颈部癌症患者进行基于计算机的生活质量监测对于获取可支持临床决策、识别潜在需求并支持分级护理模式的具有临床意义的数据至关重要。这是在葡萄牙肿瘤研究所（IPO - 波尔图）、耳鼻喉科和颌面外科部门服务临床实践中常规实施生活质量的一个基本步骤。最后，考虑到葡萄牙真菌学诊断普遍缺乏的情况，我们提出了一个诊断性能图表，强调了需要仔细询问病史，重点是量化潜伏期。
