title: Physical and mental quality of life in adult patients with haemophilia in Belgium: the impact of financial issues.
abstract: In Belgium, where haemophilia affects approximately 1:7000 people (2011), data on patients' quality of life (QoL) is scarce. This project aims to assess physical and mental QoL (P-QoL and M-QoL) simultaneously, and to analyse the influence of different variables on these two aspects of QoL. After Ethics Committee approval, we contacted 84 adult haemophilia A (HA) and haemophilia B (HB) patients, without current inhibitors, on replacement therapy (on-demand or secondary prophylaxis), regularly followed up at our comprehensive treatment centre. Seventy-one (n = 59 HA, n = 12 HB) replied to our questionnaire, which included the SF36v2 QoL assessment forms. We analysed two groups of variables: one including variables previously associated with decreased QoL, and another including variables with unclear impact on QoL (e.g., patients' understanding of haemophilia-related issues, economical concerns). In our population (mean ± SD age: 45.2 ± 14.7 years old), P-QoL appeared more reduced than M-QoL. P-QoL was strongly influenced by the number of arthropathies while M-QoL was primarily affected by patients' concern of personal costs due to haemophilia. Among this latter group, having knowledge of insurance coverage had a positive impact on M-QoL. Scores did not depend on haemophilia type. QoL was impaired in our haemophilia patients. A simultaneous assessment of P-QoL and M-QoL confirmed the benefit of primary prophylaxis in P-QoL, while originally pointing out the major burden of patients' concerns and poor understanding of haemophilia-related economical issues on their M-QoL. This might become a particularly challenging issue in times of financial crisis.
authors.affiliation: Haemostasis and Thrombosis Unit, Division of Haematology, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
authors.forename: A M
authors.initials: AM
authors.lastname: Carvalhosa
authors.forename: S
authors.initials: S
authors.lastname: Henrard
authors.forename: C
authors.initials: C
authors.lastname: Lambert
authors.forename: C
authors.initials: C
authors.lastname: Hermans
mesh_terms: D000328:Adult; D001530:Belgium; D005260:Female; D006467:Hemophilia A / Q000191:economics* / Q000503:physiopathology / Q000523:psychology; D002836:Hemophilia B / Q000191:economics* / Q000503:physiopathology / Q000523:psychology; D006801:Humans; D008297:Male; D008603:Mental Health / Q000191:economics; D008875:Middle Aged; D009043:Motor Activity; D011788:Quality of Life / Q000523:psychology*
keywords: Belgium; Short-Form 36 Questionnaire; financial issues; haemophilia; health-related quality of life; insurance