The societal burden of haemophilia A. I – A snapshot of haemophilia A in Australia and beyond

Brown, Laurie; La, Hai Anh; Li, Jinjing; Brunner, Matthias; Snoke, Martin; Kerr, Annette M

doi:10.1111/hae.14102

Cited by 8 publications

(10 citation statements)

References 51 publications

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“…[20][21][22][23] However, people with haemophilia still experience bleeds and joint disease to some extent, which can affect their day-today life. 24,25 Up-to-date knowledge on all reproductive phases in the current era of haemophilia treatment in addition to current research on the psychosocial impact of haemophilia is essential to ensure quality of haemophilia reproductive healthcare. We aimed to explore HCs perspective during preconception, pregnancy, delivery, and the postpartum period to assist clinicians in meeting the needs of HCs.…”

Section: Introductionmentioning

confidence: 99%

“…This information is partially outdated as the prospects of living with haemophilia still change favourably due to introduction of non‐replacement therapy and gene therapy. 20–23 However, people with haemophilia still experience bleeds and joint disease to some extent, which can affect their day‐to‐day life 24,25 …”

Section: Introductionmentioning

confidence: 99%

“… 20 , 21 , 22 , 23 However, people with haemophilia still experience bleeds and joint disease to some extent, which can affect their day‐to‐day life. 24 , 25 …”

Section: Introductionmentioning

confidence: 99%

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A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy

et al. 2021

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Introduction:Haemophilia carriers (HCs) face considerable haemostatic and psychological challenges during reproduction.Aim: To explore the perspectives of HCs on healthcare in the current standard of haemophilia treatment during all reproductive phases: preconception, pregnancy, childbirth and the postpartum period. In addition, we examined the psychological impact of haemophilia during these phases.Material and methods: Focus group discussions (FGDs) and semi-structured interviews were conducted with HCs in January/February 2020 until data saturation was reached. All sessions were recorded, transcribed verbatim and analysed by two independent researchers through thematic content analysis using MAXQDA® software.The results were then discussed within the research team until consensus was reached.The constructed themes were shared with and reviewed by the HCs.Results: Fifteen HCs were included in three FGDs and four interviews. Five central themes were constructed: (1) communication by healthcare professionals, (2) lack of knowledge, (3) feeling insecure, (4) autonomy and (5) family experiences with haemophilia. Desired improvements in care mainly concerned counselling during preconception and pregnancy. This included timely access to comprehensive information during each consecutive phase, acceptance of HCs' choices by healthcare providers and healthcare tailored to the HC's family experience with haemophilia. Conclusions:In recent years, haemophilia treatment has seen major advances, which could impact general and reproductive care for HCs. HCs indicated that reproductive care would benefit from a more personal and informative approach. Healthcare professionals could use these insights to adapt their consultations to meet the needs of these women when they are preparing for having children.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy

et al. 2021

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“…Data from the 2015 Australian Burden of Disease Study showed that there was a total of 227 disability-adjusted life years (DALY), 138 years lived with disability (YLD) and 89 years of life lost (YLL) in males from hemophilia (Brown et al, 2020b). This financial burden of the disease may be explained by the number of healthcare professionals involved in the care of patients with hemophilia A: hematologists, hemophilia nurses, social workers, physiotherapies, psychologists, psychotherapists, general practitioners, and a variety of complementary therapists (i.e., acupuncture or massage therapists) (Brown et al, 2020a).…”

Section: Discussionmentioning

confidence: 99%

Analysis of epidemiological and economic data of hemophilia A patients in Brazil

Sarmento¹,

Picoli²,

Renni³

et al. 2022

JBES

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Objective: To describe the annual medical direct costs per hemophilia A (HA) patient in the Brazilian public healthcare system (SUS) and to understand and describe the patients’ hospital journey, demographical characteristics, and the procedures in the. Methods: This retrospective analysis of DataSUS databases. Data from individuals with registries of HA treatment were gathered between January 1st, 2018, and June 30th, 2021. Besides the D66 ICD-10th code (HA), were also considered the occurrence of some procedures like factor VIII dosage and by-pass therapy dispensation or administration as inclusion criteria. Exclusion criteria were occurrence of factor IX dispensation and female patients were excluded, among others. A record linkage using sociodemographic characteristics was conducted to identify unique patients. Results: Were identified 2,298 individuals underwent ambulatory and 1,018 underwent hospital treatments. The results show that most patients are from the Southeast region of the country, white and middle-aged individuals. The median cost of HA treatment per patient-year was BRL 90.36 for ambulatory care and BRL 1,015.31 for hospital care procedures. The costs were significantly higher for more severe patients and for those between 12 and 18 years old (BRL 1,974.75 and BRL 1,049.09, respectively). Conclusion: The evidence demonstrated encourages the implementation of policies aiming to improve the quality of care provided to patients with HA. Providing referral centers for hemophiliac patients is primordial for the success of the treatment and can result in efficiency.

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“…There are also some limitations in current study. First, since the prevalence of hemophilia is much lower in women than in men [20], the lack of inclusion of women with hemophilia in this study may result in selection bias. Second, individual dietary habits and physical activity intensity may be confounding factors affecting BTMs.…”

Section: Discussionmentioning

confidence: 99%

Increased Bone Formation and Bone Resorption in Patients with Hemophilic Arthropathy: A Cross-Sectional Study

Zhang

et al. 2020

Preprint

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Background: Previous studies have revealed that hemophilia patients with severe osteoporosis have more arthropathy symptoms and that their bone metabolism is frequently abnormal. However, it is unclear how to achieve an early diagnosis of hemophilic arthropathy (HA) through abnormalities in bone metabolism.Methods: This study includes 46 patients with HA, 48 healthy controls (HC) and 43 hemophilia without arthropathy (HWA) patients (5 patients were excluded). We measured and compared bone turnover markers (BTMs) including osteocalcin (OC), n-terminal procollagen 1 elongating pro-peptide (t-P1NP) and β-isomerized collagen I-c-terminal peptide breakdown product (β-CTx) of three groups. Receiver operating characteristic (ROC) curve was drawn to obtain the critical value of BTMs for the diagnosis of HA. One-way ANOVA was used to compare the BTMs levels in different degrees of hemophilia. Multivariate linear regression was performed to analyze the correlation between BTMs and clinical severity of HA. Results: The t-P1NP, β-CTx and OC levels of HA and HWA patients were higher than HC, and HA patients had higher t-P1NP and β-CTx levels than HWA patients (p<0.001). But there was no significant difference in OC levels between HA and HWA groups. Logistic regression analysis revealed that high β-CTx and high t-P1NP were significantly associated with HA. ROC curve showed the highest area under the curve was the t-P1NP+β-CTx model (area under the curve was 0.686, the sensitivity was 54.5% and the specificity was 82.5%, the cut-off value was 0.578). Multivariate linear regression analysis indicated that β-CTx was positively correlated with the clinical severity of HA, and t-P1NP levels was negatively correlated with the clinical severity of HA. β-CTx levels decreased with the degree of hemophilia. Conclusions: Increased bone resorption and bone formation were associated with the onset of HA, and the t-P1NP+β-CTx model (β-CTx >775.200 ng/mL and t-P1NP>55.100 ng/mL) contributed to the diagnosis of HA.

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The societal burden of haemophilia A. I – A snapshot of haemophilia A in Australia and beyond

Cited by 8 publications

References 51 publications

A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy

A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy

Analysis of epidemiological and economic data of hemophilia A patients in Brazil

Increased Bone Formation and Bone Resorption in Patients with Hemophilic Arthropathy: A Cross-Sectional Study

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