{"title":"原发性免疫缺陷症患者的生活质量:其对共同决策和患者疗效的贡献。","authors":"Mark Ballow","doi":"10.2500/aap.2024.45.240056","DOIUrl":null,"url":null,"abstract":"Quality of life (QOL) measures have become increasingly important in the management of patients with complex diseases. There are a number of instruments to measure QOL that include broad areas or domains of physical, psychological, social, spiritual, and environmental issues. The number of potential domains plus the large number of items within each domain have led to the development of a large variety of QOL instruments and of different approaches by using both health-related and non-health-related factors. Health-related QOL (HRQOL) measures have been incorporated into clinical trials to assess changes in the patient's perspective on his or her disease and the effects of treatment. An important aspect of these HR-QOL instruments is that these questionnaires are patient reported and usually self-administered. The life-long therapy of intravenous immunoglobulin (IVIG) or subcutaneous immunoglobulin (SCIG) can be a challenge to the patient, his or her family and the physician. A number of patient-reported surveys have been published that examined treatment satisfaction and the comparison between IVIG and SCIG replacement therapy in patients with primary immunodeficiency. This review explores the use of HR-QOL surveys in patient preferences for mode and route of immunoglobulin therapy and site of care. Shared decision-making will be explored to emphasize the importance of this approach in optimizing patient care and compliance.","PeriodicalId":520163,"journal":{"name":"Allergy & Asthma Proceedings","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Quality of life in primary immunodeficiency: Its contribution to shared decision-making and patient outcomes.\",\"authors\":\"Mark Ballow\",\"doi\":\"10.2500/aap.2024.45.240056\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Quality of life (QOL) measures have become increasingly important in the management of patients with complex diseases. There are a number of instruments to measure QOL that include broad areas or domains of physical, psychological, social, spiritual, and environmental issues. The number of potential domains plus the large number of items within each domain have led to the development of a large variety of QOL instruments and of different approaches by using both health-related and non-health-related factors. Health-related QOL (HRQOL) measures have been incorporated into clinical trials to assess changes in the patient's perspective on his or her disease and the effects of treatment. An important aspect of these HR-QOL instruments is that these questionnaires are patient reported and usually self-administered. The life-long therapy of intravenous immunoglobulin (IVIG) or subcutaneous immunoglobulin (SCIG) can be a challenge to the patient, his or her family and the physician. A number of patient-reported surveys have been published that examined treatment satisfaction and the comparison between IVIG and SCIG replacement therapy in patients with primary immunodeficiency. This review explores the use of HR-QOL surveys in patient preferences for mode and route of immunoglobulin therapy and site of care. Shared decision-making will be explored to emphasize the importance of this approach in optimizing patient care and compliance.\",\"PeriodicalId\":520163,\"journal\":{\"name\":\"Allergy & Asthma Proceedings\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-09-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Allergy & Asthma Proceedings\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.2500/aap.2024.45.240056\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Allergy & Asthma Proceedings","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.2500/aap.2024.45.240056","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
摘要
生活质量(QOL)测量在复杂疾病患者的管理中变得越来越重要。目前有许多测量 QOL 的工具,其中包括身体、心理、社会、精神和环境等广泛领域。潜在领域的数量加上每个领域内的大量项目,导致了大量 QOL 工具的开发,以及通过使用与健康相关和非健康相关因素的不同方法。与健康相关的 QOL(HRQOL)测量已被纳入临床试验,以评估病人对其疾病的看法和治疗效果的变化。这些健康相关 QOL 工具的一个重要方面是,这些问卷由患者报告,通常由患者自行填写。静脉注射免疫球蛋白(IVIG)或皮下注射免疫球蛋白(SCIG)的终身治疗对患者、患者家属和医生来说都是一项挑战。许多患者报告的调查报告都对原发性免疫缺陷患者的治疗满意度以及 IVIG 和 SCIG 替代治疗的比较进行了研究。本综述探讨了人力资源-QOL 调查在患者对免疫球蛋白治疗方式和途径以及治疗地点的偏好方面的应用。还将探讨共同决策,以强调这种方法在优化患者护理和依从性方面的重要性。
Quality of life in primary immunodeficiency: Its contribution to shared decision-making and patient outcomes.
Quality of life (QOL) measures have become increasingly important in the management of patients with complex diseases. There are a number of instruments to measure QOL that include broad areas or domains of physical, psychological, social, spiritual, and environmental issues. The number of potential domains plus the large number of items within each domain have led to the development of a large variety of QOL instruments and of different approaches by using both health-related and non-health-related factors. Health-related QOL (HRQOL) measures have been incorporated into clinical trials to assess changes in the patient's perspective on his or her disease and the effects of treatment. An important aspect of these HR-QOL instruments is that these questionnaires are patient reported and usually self-administered. The life-long therapy of intravenous immunoglobulin (IVIG) or subcutaneous immunoglobulin (SCIG) can be a challenge to the patient, his or her family and the physician. A number of patient-reported surveys have been published that examined treatment satisfaction and the comparison between IVIG and SCIG replacement therapy in patients with primary immunodeficiency. This review explores the use of HR-QOL surveys in patient preferences for mode and route of immunoglobulin therapy and site of care. Shared decision-making will be explored to emphasize the importance of this approach in optimizing patient care and compliance.