Health‐related quality of life and physical activity in Nordic patients with moderate haemophilia A and B (the MoHem study)

Abstract

AbstractIntroductionThe impact of moderate haemophilia on health‐related quality of life (HRQoL) and physical activity (PA) is not well known. In previous studies, persons with factor VIII/factor IX activity (FVIII/FIX:C) below 3 IU/dL were associated with a more severe bleeding phenotype than predicted.AimTo explore HRQoL and PA in patients with moderate haemophilia A (MHA) and B (MHB).MethodsA cross‐sectional, multicentre study covering patients with MHA and MHB in Sweden, Finland, and Norway. HRQoL was assessed with the EuroQoL 5‐Dimensions (EQ‐5D) form and PA with the International Physical Activity Questionnaire among participants aged ≥15 years.ResultsWe report on 104 patients aged 15–84 years from the MoHem study. Overall, EQ‐5D utility was .85 (median) (Q1–Q3 0.73–1.0) with corresponding visual analogue scale (VAS) 80 (70–90), which were similar regardless of treatment modality, FVIII/FIX:C, and MHA or MHB. Pain and mobility were most frequently affected dimensions. Utility (r = ‐.54), VAS (r = ‐.42), and PA (r = ‐.32) correlated negatively with arthropathy (HJHS). Only patients aged 41–50 years displayed lower utility (p = .02) and VAS (p < .01) than the Norwegian population norm. Patients on prophylaxis aged 35–54 years reported higher PA than those treated on‐demand (p = .01).ConclusionHaemophilic arthropathy had negative impact on HRQoL and PA in Nordic patients with moderate haemophilia. Middle‐aged patients captured lower utility and VAS than observed in the general population. Tailored prophylaxis and improved joint health may influence positively on HRQoL and PA also in moderate haemophilia.