The Impact of Bleeding Disorders on the Socioeconomic Status of Adult Patients

Summary

The impact of inherited bleeding disorders on the socioeconomic status (SES) of affected individuals is not clear. The SES of adult patients with congenital bleeding disorders (PWBD) from a centre in Germany (age 42.3 ± 15.0 years) was compared to that of a gender- and age-matched control group of patients with thrombophilia or a thrombotic event (PWT). Patients completed a questionnaire including aspects of SES, impact of the disease on their lives, and health-related quality of life (HRQoL). Forty-five patients were enrolled in each group; 71 % of PBWD had a severe form of the bleeding disorder (FVIII/IX activity < 1 % or VWD type 3), and 60 % of all PWBD were treated on-demand. PWBD had a lower monthly income (p = 0.029) and a worse occupational status (p = 0.047) than PWT, but there was no difference regarding the project-specific SES index. PWBD also reported a worse HRQoL in the physical summary component score of the SF-36 (p < 0.001). More PWBD (69.8 %) reported a high impact of the disease on their lives than PWT (33.3 %, p < 0.001). In summary, PWBD had a worse occupational status, monthly income, health behaviour, HRQoL, and impact of the disease on their lives compared to PWT, but not a significantly different SES in general.

Zusammenfassung

Der Einfluss angeborener Blutungsneigungen auf den sozioökonomischen Status (SES) der Betroffenen ist unklar. Der SES von Patienten mit angeborener Blutungsneigung (PWBD) aus einem Zentrum in Deutschland (Alter 42,3 ± 15,0 Jahre) wurde mit dem einer alters- und geschlechts-gematchten Kontrollgruppe von Patienten mit Thrombophilie oder einem thrombotischen Ereignis (PWT) verglichen. Die Patienten beantworteten einen Fragebogen zu Aspekten des SES, Einfluss der Erkrankung auf ihr Leben und gesundheitsbezogener Lebensqualität (HRQoL). 45 Patienten wurden in jeder Gruppe eingeschlossen; 71 % der PWBD hatten eine schwere Form der Blutungsneigung (FVIII/IX-Aktivität < 1 % oder VWD Typ 3), 60 % aller PWBD erhielten Bedarfsbehandlung. PWBD hatten ein geringeres monatliches Einkommen (p = 0,029) und einen schlechteren Beschäftigungsstatus (p = 0,047) als PWT; es fand sich kein Unterschied bezüglich des projektspezifischen SES-Index. PWBD hatten eine schlechtere körperliche HRQoL (p < 0,001). Mehr PWBD (69.8 %) berichteten einen starken Einfluss der Erkrankung auf ihr Leben als PWT (33.3 %, p < 0,001). Es zeigten sich signifikante Unterschiede zwischen PWBD und PWT bezüglich Beschäftigungsstatus, Einkommen, Gesundheitsverhalten, HRQoL und Einfluss der Erkrankung auf ihr Leben, nicht jedoch bezüglich des generellen SES.

Keywords

haemophilia - von Willebrand disease - socioeconomic status - quality of life - outcomes

Schlüsselwörter

hämophilie - von-willebrand-syndrom - sozioökonomischer status - lebensqualität - ergebnisse

Author contributions

KH designed the study, recruited patients, and contributed to data analysis. KH and SvM drafted the first version of the manuscript. SvM analysed the data. CB critically revised the manuscript. FL oversaw the study, recruited patients, and critically revised the manuscript. All authors approved the final version of the manuscript.

^* Authors contributed equally to the paper.

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