Growing up with hemophilia Health related quality of life and psychosocial functioning

In this thesis, three major elements in the research around growing up with hemophilia are presented: development and evaluation of instruments (Part I), HRQOL and psychosocial outcomes (Part II) and psychosocial care (Part III). This thesis is the first to describe what it is like to grow up with hemophilia, in terms of HRQOL and psychosocial functioning, for both patients and their mothers. The development and evaluation of several HRQOL and psychosocial instruments (Part I) showed us that this process is difficult, although measuring HRQOL with adequate instruments is indispensable, and should be an integral part of care. Additional research using the existing measures is necessary to support and document the lacking measurement properties of currently available questionnaires. The instruments developed and evaluated gave us the opportunity to assess psychosocial outcomes (Part II), showing that HRQOL in young boys with hemophilia, in contrast to their females counterparts, is not impaired, until young adulthood is reached. Young adult (YA) men are struggling with physical impairments, gaining autonomy, transfer to adult healthcare and school/work functioning. All these aspects have a great impact on YA, and appropriate support should be offered during this transitional phase, to YA but also to parents; the transition from the extensive multidisciplinary care in childhood in terms of psychosocial support is difficult. Continuity of multidisciplinary healthcare for children, adolescents, YA and parents is necessary to ensure adequate health related quality of life and psychosocial functioning, and improve that of vulnerable groups (such as girls and YA men).