Polonsky William H
Curr Diab Rep. 2002 Apr;2(2):153-9. doi: 10.1007/s11892-002-0075-5.
Patients with diabetes commonly feel overwhelmed, frustrated, or "burned out" by the daily hassles of disease management and by the unending, often burdensome self-care demands. Many report feeling angry, guilty, or frightened about the disease, and often are unmotivated to complete diabetes self-care tasks. The toll of short- and long-term complications can make the disease even more burdensome. Not surprisingly, it is a consistent finding across studies that diabetes is associated with impaired health-related quality of life (HRQOL), measured in a variety of different ways. Importantly, the relationship between HRQOL and diabetes appears to be bidirectional. Both medical and psychosocial aspects of diabetes may negatively affect HRQOL; in turn, impaired HRQOL may negatively influence diabetes self-management. Unfortunately, the concept of HRQOL in diabetes remains unclear, making precise evaluation and intervention difficult. There is growing agreement that the focus of HRQOL assessment should be on the subjective burden of symptoms, not merely on the presence of objectively identifiable problems. Proper evaluation should include both generic and diabetes-specific elements of HRQOL. In this article, a comprehensive multidimensional model of HRQOL in diabetes involving six major components is introduced and described. Representative self-report questionnaires that may be valuable in assessing these components are also presented. Once the patient's most important HRQOL issues have been identified and prioritized, appropriate intervention becomes possible. The good news is that there are now a growing number of research-based interventions available for addressing almost all of the HRQOL impairments that may occur.
糖尿病患者通常会因疾病管理的日常琐事以及没完没了且往往繁重的自我护理要求而感到不堪重负、沮丧或“精疲力竭”。许多患者表示对这种疾病感到愤怒、内疚或恐惧,而且往往没有动力去完成糖尿病自我护理任务。短期和长期并发症带来的负担会使这种疾病更加难以承受。毫不奇怪,多项研究一致发现,糖尿病与健康相关生活质量(HRQOL)受损有关,评估方式多种多样。重要的是,HRQOL与糖尿病之间的关系似乎是双向的。糖尿病的医学和心理社会方面都可能对HRQOL产生负面影响;反过来,HRQOL受损可能会对糖尿病自我管理产生负面影响。不幸的是,糖尿病中HRQOL的概念仍然不明确,这使得精确评估和干预变得困难。越来越多的人达成共识,即HRQOL评估的重点应该是症状的主观负担,而不仅仅是客观可识别问题的存在。恰当的评估应包括HRQOL的一般要素和糖尿病特定要素。本文介绍并描述了一个涉及六个主要组成部分的糖尿病HRQOL综合多维模型。还介绍了在评估这些组成部分时可能有价值的代表性自我报告问卷。一旦确定了患者最重要的HRQOL问题并确定了优先顺序,就可以进行适当的干预。好消息是,现在有越来越多基于研究的干预措施可用于解决几乎所有可能出现 的HRQOL损害问题。