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

• Published in: Haemophilia : the official journal of the World Federation of Hemophilia Vol. 26; no. 3; pp. 520 - 528
• Main Authors: Farej, Ryan, Batt, Katharine, Afonja, Olubunmi, Martin, Carolyn, Aubert, Ronald, Carlyle, Maureen, White, John, Sidonio, Robert F.
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01.05.2020
• Subjects: Adolescent; Adult; Aged; Bleeding; chart abstraction; Coagulation factors; Comorbidity; Electrolyte balance; Factor IX deficiency; Female; Females; haemophilia; healthcare claims; Hemophilia; Hemophilia A - epidemiology; Hemorrhage; Humans; Insurance Claim Review - standards; Medical Records - standards; Medicare; Middle Aged; Nomenclature; Patients; Pharmacy; women with bleeding disorders; Young Adult; haemophilia; chart abstraction; healthcare claims; women with bleeding disorders
• ISSN: 1351-8216; 1365-2516
• DOI: 10.1111/hae.13981

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 ion 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.