Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

Abstract

BackgroundThe treatment of bleeding disorders improved in the last decades. However, the effect of growing up with bleeding disorders on developmental, emotional, and social aspects is understudied. Therefore, this study assesses HRQOL, developmental milestones, and self-esteem in Dutch young adults (YA) with bleeding disorders compared to peers.MethodsNinety-five YA (18–30 years) with bleeding disorders (78 men; mean 24.7 years, SD 3.5) and 17 women (mean 25.1 years, SD 3.8) participated and completed the Pediatric Quality of Life Inventory Young Adult version, the Course of Life Questionnaire, and the Rosenberg Self-Esteem Scale. Differences between patients with bleeding disorders and their peers, and between hemophilia severity groups, were tested using Mann–Whitney U tests.ResultsYA men with bleeding disorders report a slightly lower HRQOL on the total scale, physical functioning, and school/work functioning in comparison to healthy peers (small effect sizes). YA men with severe hemophilia report more problems on the physical functioning scale than non-severe hemophilia. YA men with bleeding disorders achieved more psychosexual developmental milestones than peers, but show a delay in ‘paid jobs, during middle and/or high school.’ A somewhat lower self-esteem was found in YA men with bleeding disorders in comparison to peers (small effect size). For YA women with bleeding disorders, no differences were found on any of the outcomes in comparison to peers.ConclusionThis study demonstrates some impairments in HRQOL and self-esteem in YA men with bleeding disorders. By monitoring HRQOL, problems can be identified early, especially with regard to their physical and professional/school functioning.

Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

“…Longitudinal data collected with the KLIK method can provide insight into the causality of HRQOL outcomes over time. A recent study performed in young adults with CBD showed a lower HRQOL compared to healthy peers, suggesting that HRQOL decreases with increasing age in the transition period . Moreover, it would be interesting to add a disease‐specific HRQOL questionnaire to the KLIK website, for example the CHO‐KLAT, which has shown to have the best measurement properties .…”

“…A recent study performed in young adults with CBD showed a lower HRQOL compared to healthy peers, suggesting that HRQOL decreases with increasing age in the transition period. 43 Moreover, it would be interesting to add a disease-specific HRQOL questionnaire to the KLIK website, for example the CHO-KLAT, which has shown to have the best measurement properties. 44,45 This way, children and adolescents can be identified who are most likely to develop (haemophilia-related) problems in daily life.…”

Professional functioning of young adults with congenital coagulation disorders in the Netherlands

“…This enabled to start prophylactic treatment in patients with severe haemophilia (<1% clotting factor VIII or IX present in the blood) in order to prevent bleeding and joint damage, ultimately allowing patients to maintain a near normal lifestyle with little risk for arthropathy . Still, children and (young) adults growing up with coagulation disorders may experience impairments in daily life, such as restrictions in physical activity, travelling and school participation . Concerns exist about the long‐term impact of the disease and its treatment on adaptation and functioning in adult life.…”

“…Suboptimal HRQOL and low employment rates found in a previous study have led us to conceive the current study, in which we aim to gain more in‐depth insight into professional functioning (paid employment, impairment in working) of YA with CCD and to assess whether sociodemographics, disease characteristics, functional disabilities, physical HRQOL and illness cognitions are associated with professional functioning.…”

“…4 Still, children and (young) adults growing up with coagulation disorders may experience impairments in daily life, such as restrictions in physical activity, travelling and school participation. [5][6][7] Concerns exist about the long-term impact of the disease and its treatment on adaptation and functioning in adult life.…”