Evidence map›Paper›PMID 41614326›Full record

Observational studyHaemophilia : the official journal of the World Federation of Hemophilia

Hemophilia Severity and Its Association With Mental Health and Health-Related Quality of Life-Results From a Cross-Sectional Multicenter Study.

Francesca Schmitt, Laura Maier, Stefan Lerch, Manuela Albisetti, Alice Trinchero, Lukas Graf, Heinz Hengartner, Pierre Fontana, Nicolas von der Weid, Katrin Scheinemann and 7 more

Abstract readMulticenter StudyObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Haemophilia : the official journal of the World Federation of Hemophilia. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

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Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

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5 · Who and what money

Authors and funding

17 authors.

Francesca SchmittDivision of Pediatric Hematology & Oncology, Department of Pediatrics, Inselspital, University Hospital, University of Bern, Bern, Switzerland.
Laura MaierDivision of Pediatric Hematology & Oncology, Department of Pediatrics, Inselspital, University Hospital, University of Bern, Bern, Switzerland.
Stefan LerchUniversity Hospital of Child and Adolescent Psychiatry and Psychotherapy, University of Bern, Bern, Switzerland.
Manuela AlbisettiDivision of Pediatric Hematology, University Children`s Hospital Zurich, Zurich, Switzerland.
Alice TrincheroDepartment of Medical Oncology and Hematology, University Hospital Zurich, Zurich, Switzerland.
Lukas GrafCenter For Laboratory Medicine and Hemophilia, Hemostasis Center, St. Gallen, Switzerland.
Heinz HengartnerDivision of Oncology/ Hematology, Children's Hospital of Eastern Switzerland, St. Gallen, Switzerland.
Pierre FontanaDivision of Angiology and Hemostasis, University Hospitals of Geneva, Geneva, Switzerland.
Nicolas von der WeidDivision of Pediatric Hematology and Oncology, University Children's Hospital Basel, University of Basel, Basel, Switzerland.
Katrin ScheinemannDivision of Oncology/ Hematology, Children's Hospital of Eastern Switzerland, St. Gallen, Switzerland.
Sylvia von MackensenDepartment of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Corinna ReichlUniversity Hospital of Child and Adolescent Psychiatry and Psychotherapy, University of Bern, Bern, Switzerland.
Marialuisa CaveltiUniversity Hospital of Child and Adolescent Psychiatry and Psychotherapy, University of Bern, Bern, Switzerland.
Ines Mürner-LavanchyUniversity Hospital of Child and Adolescent Psychiatry and Psychotherapy, University of Bern, Bern, Switzerland.
Johanna A Kremer HovingaDepartment For BioMedical Research, University of Bern, Bern, Switzerland.
Michael KaessUniversity Hospital of Child and Adolescent Psychiatry and Psychotherapy, University of Bern, Bern, Switzerland.
Mutlu Kartal-KaessDivision of Pediatric Hematology & Oncology, Department of Pediatrics, Inselspital, University Hospital, University of Bern, Bern, Switzerland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundLimited existing research on mental health and health-related quality of life (HRQoL) in people with hemophilia (PwH) suggests these patients still may have poor mental health despite treatment advances significantly improving somatic outcomes.

objectivesThis multicenter study aimed to systematically assess mental health and HRQoL and their association with disease severity, age and treatment regimen among PwH.

methodsThis cross-sectional study, conducted in nine Swiss hemophilia treatment centers, included participants aged six years and older with congenital hemophilia of any severity. The study procedure comprised a semi-structured psychiatric diagnostic interview and an online survey comprising age-validated psychological measures to capture mental health and HRQoL. Treatment centers provided clinical data.

resultsOf 164 PwH enrolled in the study, 156 participants completed the psychiatric diagnostic interview. 25% met the criteria for a mental disorder (MD). Most common among the MD were affective disorders, substance use disorders, and attention deficit hyperactive disorder. Moderate/severe hemophilia and lower baseline factor activity were significantly associated with higher psychopathology and lower HRQoL. Of participants with moderate/severe hemophilia, 26% of those on prophylaxis versus 45% of those on on-demand met the criteria for an MD.

conclusionsElevated prevalence of MD, and the association of psychopathology with disease severity and treatment regimen, highlights the continued relevance of mental health in hemophilia research. Further objective clinical research is indispensable to define targets for improved and individualized comprehensive treatment care plans. PLAIN LANGUAGE SUMMARY: Major treatment advances have transformed hemophilia care, allowing most people with hemophilia (PwH) to have average lifespans. Reduced bleeding complications have shifted attention to overall well-being and mental health of PwH. The multicenter Swiss HERMES study examined 164 children and adults with hemophilia to explore the link between disease severity, treatment regimen, mental health, and health-related quality of life using standard questionnaires and a psychiatric interview. About one in four participants had at least one mental disorder-most often depression, substance use disorders, or ADHD. Participants with moderate or severe hemophilia, or lower clotting factor levels, reported poorer health-related quality of life. Prophylactic treatment may support mental health in participants with moderate or severe hemophilia. These findings show that mental health issues are common in PwH and highlight the need to integrate psychological screening and support into comprehensive hemophilia care.

Indexed as

Hemophilia AMental HealthQuality of LifeAdolescentAdultChildCross-Sectional StudiesFemaleHumansMaleMental DisordersMiddle AgedSeverity of Illness IndexYoung Adulthealth‐related quality of lifehemophiliamental disordersmental healthpsychopathology

Identifiers

PMID41614326
PMCPMC13175438

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.