Kool Marianne B, Geenen Rinie, Egberts Marthe R, Wanders Hendriët, Van Loey Nancy E
Association of Dutch Burn Centres, Postbus 1015, 1940 EA Beverwijk, The Netherlands; Utrecht University, Department of Psychology, Heidelberglaan 1, 3508 TC Utrecht, The Netherlands.
Utrecht University, Department of Psychology, Heidelberglaan 1, 3508 TC Utrecht, The Netherlands.
Burns. 2017 Jun;43(4):747-756. doi: 10.1016/j.burns.2016.11.016. Epub 2017 Jan 6.
The concept quality of life (QOL) refers to both health-related outcomes and one's skills to reach these outcomes, which is not yet incorporated in the burn-related QOL conceptualisation. The aim of this study was to obtain a comprehensive overview of relevant burn-specific domains of QOL from the patient's perspective and to determine its hierarchical structure.
Concept mapping was used comprising a focus group (n=6), interviews (n=25), and a card-sorting task (n=24) in burn survivors. Participants sorted aspects of QOL based on content similarity after which hierarchical cluster analysis was used to determine the hierarchical structure of burn-related QOL.
Ninety-nine aspects of burn-related QOL were selected from the interviews, written on cards, and sorted. The hierarchical structure of burn-related QOL showed a core distinction between resilience and vulnerability. Resilience comprised the domains positive coping and social sharing. Vulnerability included 5 domains subdivided in 13 subdomains: the psychological domain included trauma-related symptoms, cognitive symptoms, negative emotions, body perception and depressive mood; the economical domain comprised finance and work; the social domain included stigmatisation/invalidation; the physical domain comprised somatic symptoms, scars, and functional limitations; and the intimate/sexual domain comprised the relationship with partner, and anxiety/avoidance in sexual life.
From the patient's perspective, QOL following burns includes a variety of vulnerability and resilience factors, which forms a fresh basis for the development of a screening instrument. Whereas some factors are well known, this study also revealed overlooked problem and resilience areas that could be considered in client-centred clinical practice in order to customize self-management support.
生活质量（QOL）的概念既指与健康相关的结果，也指实现这些结果的个人技能，而这尚未纳入烧伤相关生活质量的概念化之中。本研究的目的是从患者的角度全面概述烧伤特定的生活质量相关领域，并确定其层次结构。
采用概念映射法，包括对烧伤幸存者进行焦点小组访谈（n = 6）、个体访谈（n = 25）以及卡片分类任务（n = 24）。参与者根据内容相似性对生活质量的各个方面进行分类，之后使用层次聚类分析来确定烧伤相关生活质量的层次结构。
从访谈中选取了99个烧伤相关生活质量的方面，写在卡片上并进行分类。烧伤相关生活质量的层次结构显示出恢复力和脆弱性之间的核心区别。恢复力包括积极应对和社交分享两个领域。脆弱性包括5个领域，细分为13个子领域：心理领域包括创伤相关症状、认知症状、负面情绪、身体感知和抑郁情绪；经济领域包括财务和工作；社会领域包括污名化/无效化；身体领域包括躯体症状、疤痕和功能限制；亲密/性领域包括与伴侣的关系以及性生活中的焦虑/回避。
从患者的角度来看，烧伤后的生活质量包括各种脆弱性和恢复力因素，这为开发一种筛查工具提供了新的基础。虽然有些因素是众所周知的，但本研究也揭示了一些被忽视的问题和恢复力领域，在以患者为中心的临床实践中可以考虑这些因素，以便定制自我管理支持。
