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

Background: The 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 adul...

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Publicado en:Quality of Life Research Vol. 27; no. 1; pp. 159 - 172
Autores principales: Limperg, P. F., Haverman, L., Maurice-Stam, H., Coppens, M., Valk, C., Kruip, M. J. H. A., Eikenboom, J., Peters, M., Grootenhuis, M. A.
Formato: research tables/charts Journal Article
Publicado: Springer Nature Jan2018
Acceso en línea:Ver este registro en EBSCOhost
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        atl: Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders.
      aug:
        au:
          Limperg, P. F.
          Haverman, L.
          Maurice-Stam, H.
          Coppens, M.
          Valk, C.
          Kruip, M. J. H. A.
          Eikenboom, J.
          Peters, M.
          Grootenhuis, M. A.
        affil: Psychosocial Department, Emma Children’s Hospital, AMC, Postbox 22660, 1100 DD, Amsterdam, The Netherlands
      sug:
        subj:
          Quality of Life Psychosocial Factors
          Self Concept
          Hemorrhagic Diathesis Epidemiology
          Achievement
          Young Adult
          Female
          Hemorrhagic Diathesis Pathology
          Male
          Adolescence
          Adult
          Comparative Studies
          Scales
          Rosenberg Self Esteem Scale
          Questionnaires
          Human
          Adolescent: 13-18 years
          Adult: 19-44 years
          Female
          Male
      ab: Background: The 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.Methods: Ninety-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.Results: YA 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.Conclusion: This 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.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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