The impact of type 1 diabetes on young adults’ health-related quality of life

Abstract Background 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. Methods 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). Results 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. Conclusions 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.