Characterizing female patients with haemophilia A: Administrative claims analysis and medical chart review

Abstract

Aim Haemophilia A (HA) is a male‐predominant disorder, yet women and girls can have factor VIII (FVIII) deficiency with bleeding events requiring treatment. This study aimed to identify and characterize female patients with HA. Methods Administrative claims dated 01 January 2012‐31 July 2016 were accessed for patients with 18 months’ coverage by commercial or Medicare Advantage with Part D insurance. Patients were included by HA diagnoses or treatments and/or bleeding‐related diagnoses or procedures, and excluded by haemophilia B or qualitative platelet disorder diagnoses. A sample of charts was examined for bleeding history, HA therapies and bleeding treatments. All‐cause healthcare utilization and costs were also described. Results Among 353 patients meeting initial inclusion criteria, 86 charts were procured, with 8 patients identified as having HA. Their mean age was 60 ± 17 years and most were Medicare‐insured. The mean Charlson Comorbidity Index score was 2.50 ± 2.56; the most prevalent comorbid conditions involved coagulation/haemorrhage, fluid/electrolyte balance and non‐traumatic joint disorders. Over 18 months, a mean of 54 ambulatory visits and 120 pharmacy fills were observed; mean medical costs were $86 694 and pharmacy costs were $25 396. Conclusions Identifying females with HA is challenging using healthcare claims, because diagnostic nomenclature is unclear for female patients treated for bleeding events. Although chart abstraction enhanced claims data, very few female patients were identified with HA. Nevertheless, even in a small sample, sizeable burden in comorbidity and healthcare use was observed. Improved nomenclature and coding for HA diagnoses for women and girls is key to improving research and treatment.

Regulation and importance of factor VIII levels in hemophilia A carriers

“…The current terminology used to categorize persons with hemophilia A is directly tied to FVIII levels [32]. The lack of uniform terminology directly influences both clinical care and research, as even claims data studies are unable to accurately identify hemophilia A carriers documented as receiving hemostatic treatment for bleeding events [33]. To that end, a group constituting two International Society of Haemostasis and Thrombosis (ISTH) Scientific Subcommittees have proposed new nomenclature for hemophilia carriers (Fig.…”

Trends in low vision service utilisation: A retrospective study based on general population healthcare claims

“…In recent years, there has been a wide interest in research based on healthcare claims to examine patterns in characteristics and healthcare utilisation in patients with various conditions. 25,26 Healthcare claims data are population-based, eligible to be conducted on a large scale and have the advantage of being generalisable. To our knowledge, there is only one study on LVS provision that was based on healthcare claims, in Canada, which described LVS utilisation patterns over time from both provider and user perspectives.…”

“…In addition, previous studies have mainly been based on qualitative designs, surveys or health records and have been limited by relatively small sample sizes. In recent years, there has been a wide interest in research based on healthcare claims to examine patterns in characteristics and healthcare utilisation in patients with various conditions 25,26 . Healthcare claims data are population‐based, eligible to be conducted on a large scale and have the advantage of being generalisable.…”