Alonso Lebrero E
Hospital Niño Jesús, Madrid, España.
Allergol Immunopathol (Madr). 2000 May-Jun;28(3):175-83.
Asthma is one of the most frequent chronic illnesses in paediatric age children. In the last reviews carried out by the group of experts (EPR II) in 1997, a chapter was included on education for the groups who are involved with looking after patients with asthma, and proposes the inclusion of questions focused on the valuation of results from the patients point of view, symptomatic improvement, concerns, quality of life and the objectives of the treatment. Over the last few years questionnaires have been designed that deal with the quality of life of asthma sufferers, that describe states of health and they also allow one to detect and quantify changes in the state of health. It has been demonstrated that the Paediatric Asthma Quality of Life Questionnaire (PAQLQ) and the Thermometer of General Health (Analogical Visual Scale AVS) can be used in clinical practise and in clinical tests to evaluate paediatric patients who have sufficient capacity to read and understand. In younger children the Diary of the Asthmatic Child Carer can be used (DAC). In the Valair Study the general objective is considered to be the nalysis of the use and validity, in Spain, of the PAQLQ and the DAC during regular clinical practise situations and a series of specific objectives related to the above.
this type of study is observational and prospective. 1,012 patients between 6 and 14 years old were included, who were diagnosed as suffering from mild to moderate persistent asthma, according to the criteria established by the Global Initiative for Asthma. The children between 6 and 11 years old carried out a reading and comprehension test prior to their inclusion in the study. All the carers (father, mother or the person who is legally responsible who has lived with the child for the last three years) were taught how to fill in the DAC. The patients were divided into two groups A and B according to the clinical stability at the time they were included in the study. For the patients in group A (a group that is sensitive to change), the doctor considered it necessary, due to the fact that the asthma had been badly controlled, to add to the preliminary treatment, Montelukast (Singulair), a chewable 5 mg tablet and they changed or maintained the remaining medication according to the clinical criteria. The patients were checked 2 to 3 months after the initial visit. The patients in group B, reliability test-retest group, included patients who were clinically stable during the last month. This group was checked 2 to 4 weeks later.
different aspects were approached: a description of the clinical characteristics of the patients by study groups and the seriousness of the asthma. A description of the state of health of the patients and this was agreed among the observers. A description of the changes observed by the patients during the follow up period of the study and registered by the Doctor. An evaluation of the patients capacity to manage the questionnaires themselves. An evaluation of the measurement properties of the PAQLQ. An evaluation of the measurement properties of the DAC. An evaluation of the measurement properties of the EuroQol-5D.
the PAQLQ and the DCA have proven to be valid instruments to measure the quality of life of the children who suffer from asthma in Spain. The values of the PAQLQ reach a high degree of correlation with the seriousness of the asthma and the exerbations over the last year, which indicates a good relation between the perception that the child has of this own quality of life and the seriousness of the asthma. Young children are capable of correctly filling in the quality of life questionnaires and it doesn't take them too much time. (ABSTRACT TRUNCATED)
哮喘是儿童期最常见的慢性病之一。在1997年专家小组(EPR II)进行的最新综述中,专门设有一章论述对参与哮喘患者护理的群体的教育问题,并建议纳入从患者角度评估结果、症状改善情况、担忧、生活质量及治疗目标等方面的问题。在过去几年中,已经设计出了一些问卷,用于处理哮喘患者的生活质量问题,描述健康状况,还能让人检测并量化健康状况的变化。事实证明,儿童哮喘生活质量问卷(PAQLQ)和总体健康温度计(类比视觉量表AVS)可用于临床实践和临床试验,以评估有足够阅读和理解能力的儿科患者。对于年幼儿童,可使用哮喘儿童护理日记(DAC)。在瓦莱尔研究中,总体目标被认为是分析PAQLQ和DAC在西班牙常规临床实践中的使用情况和有效性,以及与上述内容相关的一系列具体目标。
这类研究为观察性和前瞻性研究。纳入了1012名6至14岁的患者,他们根据全球哮喘防治创议制定的标准被诊断为患有轻度至中度持续性哮喘。6至11岁的儿童在纳入研究前进行了阅读和理解测试。所有护理人员(父亲、母亲或在过去三年中与孩子共同生活的法定监护人)都接受了如何填写DAC的培训。根据纳入研究时的临床稳定性,将患者分为A组和B组。对于A组患者(对变化敏感的组),由于哮喘控制不佳,医生认为有必要在初始治疗基础上加用孟鲁司特(顺尔宁),一种5毫克的咀嚼片,并根据临床标准调整或维持其余药物治疗。在初次就诊后2至3个月对患者进行检查。B组患者为可靠性重测组,包括在上个月临床稳定的患者。该组在2至4周后接受检查。
探讨了不同方面:按研究组描述患者的临床特征及哮喘的严重程度。描述患者的健康状况,这在观察者之间达成了共识。描述患者在研究随访期间观察到并由医生记录的变化。评估患者自行处理问卷的能力。评估PAQLQ的测量特性。评估DAC的测量特性。评估欧洲五维健康量表(EuroQol-5D)的测量特性。
PAQLQ和DCA已被证明是衡量西班牙哮喘儿童生活质量的有效工具。PAQLQ的值与哮喘的严重程度及过去一年的发作情况高度相关,这表明儿童对自身生活质量的认知与哮喘的严重程度之间存在良好的关联。年幼儿童能够正确填写生活质量问卷,且不会花费太多时间。(摘要截选)