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Titre de l’article “HERMES” – Hemophilia-Related MEntal illnesS: A cross-sectional, multicenter study in Switzerland
Code d’article P29
Auteurs
  1. Francesca Schmitt UPD Bern, Universitätsklinik für Kinder- und Jugendpsychiatrie und Psychotherapie Conférencier
  2. Manuela Albisetti University Children's Hosiptal
  3. Alice Trinchero Univeristy Hospital Zurich, Switzerland
  4. Lukas Graf Centre for Laboratory Medicine St. Gallen
  5. Heinz Hengartner Children's Hospital of Sankt Gallen
  6. Pierre Fontana University Hospital Geneva
  7. Nicolas von der Weid University Children's Hospital Basel
  8. Katrin Scheinemann Children's Hospital of Sankt Gallen
  9. Ines Mürner-Lavanchy University of Basel
  10. Johanna A. Kremer Hovinga Bern University Hospital, Inselspital
  11. Michael Kaess UPD Bern
  12. Mutlu Kartal-Kaess Division of Pediatric Hematology & Oncology, Inselspital, University Hospital, University of Bern, Bern, Switzerland
Forme de présentation Poster
Domaines thématiques
  • Varia
Résumé (Abstract) Background: Hemophilia is a congenital blood disorder defined by a deficit in clotting factor activity, resulting in frequent or extended bleeding episodes. Prior to recent treatment progress greatly improving clinical outcomes in people with hemophilia (PWH), these patients experienced substantial restrictions in daily life and disease-related morbidity and mortality. Modern comprehensive care settings have pivoted focus to the management of comorbidities, namely somatic complications. While implications and chronicity of the disease put PWH at risk for mental health concerns, mental health in PWH has not been studied systematically.
Objectives: We aimed to measure 1) prevalence of comorbid mental ill-health, and 2) health-related quality of life (HRQoL) among PWH in Switzerland. Furthermore, we assessed influence of treatment factors and age on these measures. We are heading to identify targets of prevention/early intervention of mental health concerns and to improve evidence-based interdisciplinary treatment in PWH.
Methods: Six Swiss hemophilia treatment centers (HTC) recruited for this cross-sectional study. Patients aged six and up with congenital hemophilia of any severity were included. The study procedure comprised a semi-structured psychiatric diagnostic interview and an online survey with age-validated psychometric measures. In minors, we also assessed one parent/legal guardian. HTC provided clinical data.
Results: In total, 164 PWH, aged 6-84 years, participated (n=31 minors). Severe hemophilia was reported in n=85(52%), moderate in n=31(19%) and mild in n=48(29%) patients. Circa 60% used prophylactic treatment. Of 156 patients with complete diagnostic interview data, 25% had a psychiatric disorder. Likelihood for a psychiatric disorder was elevated in moderate and severe hemophilia. Higher psychopathology scores also correlated with lower factor activity levels. Patients with moderate and severe hemophilia reported lower HRQoL than patients with mild hemophilia. This group difference was pronounced in older patients. Higher severity patients on prophylaxis were more resilient to psychopathology than their peers treated on-demand.
Conclusion: PWH with higher disease severity/lower factor levels show elevated psychopathology and poorer HRQoL. Thus, despite recent therapeutic progress, suggested to lower disease burden and promote better health, our results indicate a demand to improve interdisciplinary comprehensive care in hemophilia.