ArticleHaemophilia : the official journal of the World Federation of Hemophilia2024
One day at a time: Life with Glanzmann thrombasthenia - Qualitative results from the GT 360 study.
Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Molecular Pathogenesis of Inherited Platelet Dysfunction.Biomolecules · 2025Review
- One day at a time: Life with Glanzmann thrombasthenia - Qualitative results from the GT 360 study.Haemophilia : the official journal of the World Federation of Hemophilia · 2024Article
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Authors and funding
4 authors.
Funding
Abstract
introductionGlanzmann thrombasthenia (GT) is a platelet function disorder. Symptoms include bruising and bleeding, which may be severe and life-threatening. The day-to-day experiences of those affected remain poorly documented.
aimsThe Glanzmann's 360 study aimed to better understand the daily realities of living with GT, exploring psychological, social and medical challenges to identify unmet need.
methodsPeople with GT over 18 and caregivers of children with GT participated. Mixed methods research was used, including a survey and in-depth interviews. The interviews, reported here, were audio-recorded, transcribed and thematically analysed.
resultsNineteen interviews were conducted; 14 with people with GT and five caregivers. Mean age of those with GT was 32.9 years (range 2-78 years). Eight themes emerged: Diagnosis, Bleeding and Treatment, Menstruation, Fatigue, Identity, Abuse, Pregnancy, and The Future. Three participants described misdiagnosis. Caregivers reported early recognition and prompt diagnosis of their children. Bruising, the most commonly reported symptom, led to assumption of abuse. Six (32%) participants reported joint bleeds. External bleeding was normalised. Access to home treatment and local care were limited. Fatigue caused by anaemia was described. All women reported heavy menstrual bleeding. Choices around pregnancy were limited by 'medical pessimism'. Nevertheless, participants remained hopeful for the development of improved treatment options.
conclusionPeople with GT face significant and often overlooked challenges. There is need for improved medical and psychological treatment and support, increased awareness of these needs amongst healthcare professionals, and research into developing comprehensive care models that address medical and psychosocial needs of people with GT.
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