Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands.
Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.
Health Qual Life Outcomes. 2020 May 12;18(1):137. doi: 10.1186/s12955-020-01370-8.
Young adulthood is a challenging period for people with diabetes mellitus type 1 (T1DM) as they are facing multiple life transitions while managing a demanding disease. This poses a risk for impaired health-related quality of life (HRQOL). We assessed HRQOL in a cohort of young adults with T1DM in the Netherlands, and compared outcomes with those of Dutch norm groups of healthy young adults and young adults with a chronic disease.
We analyzed data collected in a larger evaluation study on transitional care for young adults with T1DM in a nationwide sample in the Netherlands, including twelve participating hospitals. These data had been obtained from online questionnaires completed by young adults with T1DM after they had transferred to adult care. HRQOL was self-reported with the Pediatric Quality of Life Inventory for young adults (PedsQL-YA).
One hundred and sixty-five young adults with T1DM participated (44.2% response); and they scored significantly worse than did healthy peers on all domains of HRQOL, except social functioning. Particularly, functioning at school or work was worse than that of the norm group. The study group's HRQOL-scores were comparable to norm scores of young adults with chronic diseases, although the physical and social functioning of young people with T1DM was better. One quarter (26.1%) of all young adults with T1DM reported fatigue.
During transition to adulthood, young adults with T1DM struggle to maintain a balance between the demands of managing a disease and their life. Many of them encounter problems at work or school, and suffer from fatigue. These findings underscore the need to regularly assess HRQOL, and to discuss work- and education-related issues in clinical practice.
对于 1 型糖尿病(T1DM)患者来说,青年期是一个充满挑战的时期,因为他们在管理一种要求苛刻的疾病的同时,还面临着多种生活转变。这会对健康相关生活质量(HRQOL)造成损害。我们评估了荷兰一群年轻的 T1DM 患者的 HRQOL,并将结果与荷兰健康年轻人群和患有慢性疾病的年轻人群的正常组进行了比较。
我们分析了一项针对荷兰全国范围内年轻的 T1DM 患者过渡护理的更大评估研究中收集的数据,该研究包括 12 家参与医院。这些数据是从荷兰全国范围内的年轻的 T1DM 患者转移到成人护理后通过在线问卷获得的。HRQOL 是通过青少年生活质量问卷(PedsQL-YA)自我报告的。
共有 165 名 T1DM 患者参与了研究(44.2%的回应率);他们在所有 HRQOL 领域的得分都明显低于健康同龄人,除了社会功能。特别是,在学校或工作的功能比正常组差。研究组的 HRQOL 评分与慢性疾病患者的正常评分相当,尽管 T1DM 患者的身体和社会功能更好。四分之一(26.1%)的 T1DM 患者报告有疲劳感。
在向成年期过渡期间,T1DM 患者努力在管理疾病的需求和他们的生活之间保持平衡。他们中的许多人在工作或学校遇到问题,并且感到疲劳。这些发现强调了需要定期评估 HRQOL,并在临床实践中讨论与工作和教育相关的问题。