PB1265 - “HERMES” - HEmophilia Related MEntal illnesS: A cross-sectional, multicenter study in Switzerland

Tuesday, June 27, 2023

18:30 – 19:30 ET

Room: Exhibition

Presenting Author(s)

Mutlu Kartal-Kaess, MD (she/her/hers)

Consultant
Inselspital Bern, Bern, Schweiz
Bern, Bern, Switzerland

Co-Author(s)

LM

Laura Aliena Maier

B.Sc. Psychology
Inselspital Bern
Bern, Bern, Switzerland
MK

Michael Kaess

Director Child and Adolescent Psychiatry
UPD Bern, University of Bern
Bern, Bern, Switzerland
AM

Albisetti Pedroni Manuela

Senior Consultant
Kinderspital Zurich
Zurich, Zurich, Switzerland
AT

Alice Trincero

Consultant
University Hospital Zurich USZ
Zurich, Zurich, Switzerland
LG

Lukas Graf

Senior Physician
Center for Laboratory Medicine, Hemophilia- and Hemostasis Center St. Gallen
St. Gallen, Sankt Gallen, Switzerland
HH

Heinz Hengartner

Senior Consultant
Ostschweizer Kinderspital
Sankt Gallen, Sankt Gallen, Switzerland
Pierre Fontana, MD PhD (he/him/his)

Head of Geneva Platelet Group
Division of Angiology and Haemostasis, University Hospitals of Geneva, Switzerland
Geneva, Geneve, Switzerland
Nv

Nicolas von der Weid

Division Head Pediatric Hematology/Oncology
UKBB Basel
Basel, Basel-Stadt, Switzerland
KS

Katrin Scheinemann

Division Head Pediatric Hematology and Oncology
Ostschweizer Kinderspital
Sankt Gallen, Sankt Gallen, Switzerland
Sv

Silvia von Mackensen

Psychologist
University of Hamburg
Hamburg, Hamburg, Germany
SL

Stefan Lerch

Statistician
UPD, University of Bern
Bern, Bern, Switzerland
CR

Corinna Reichl

Chief Psychologist
UPD, University of Bern
Bern, Bern, Switzerland
JK

Johanna A. Kremer-Hovinga

Professor
Centre of Laboratory Medicine Section Hemostasis Inselspital Bern
Bern, Bern, Switzerland

Background: The availability of clotting factor concentrates and prophylactic home treatment for patients with hemophilia (PWH) A and B in developed countries greatly improved clinical outcomes. As the life expectancy of affected patients has increased, the management of comorbidities has become a greater focus within the comprehensive care setting. However, most studies focus on somatic complications. The past two decades revealed a growing body of work reporting increased prevalence of mental health problems in PWH. Given the severity and chronicity of the disease, internalizing disorders (i.e. anxiety, depression) as well as externalizing disorders (i.e. substance dependency, irritability and aggression) seem to go hand in hand with hemophilia.

Aims: We aimed to assess mental health problems and QoL as well as potentially influencing factors (illness factors and environmental factors) among PWH; we additionally investigate age as a potential moderator.

Methods: This is a multicentre, cross-sectional study conducted within six HTCs in Switzerland. Study participants were aged 6-99 years with congenital haemophilia (any severity) undergoing a detailed psychological assessment and an online survey utilizing validated psychological measures (QoL, psychosocial functioning, somatic comorbidities/parental factors).

Results: A total of n=164 PWH participated in the study (135 adults and 29 children). Data from n=72 participants showed a median age of 35.9 years (min. 6.92, max. 84.36, SD19.7), depicted n=56 (78%) hemophilia A, n=16 (22%) hemophilia B with severe hemophilia n=42 (58%), n=10 (14%) moderate and n=20 (28%) mild severity. A prophylactic treatment regimen was used in n=41 (57%). N=13 (14%) participants showed a psychiatric disorder. There was no correlation between psychiatric diagnosis and disease severity or age. Health-related QoL showed a significant correlation with disease severity at adult ages. Further detailed data analysis is ongoing.

Conclusion(s): We are heading to identify targets of prevention/early intervention of mental health problems and foster improvement of evidence-based interdisciplinary treatment in PWH.