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

Ragnhild J Måseide, Erik Berntorp, Jan Astermark, Anna Olsson, Maria Bruzelius, Tony Frisk, Vuokko Nummi, Riitta Lassila, Geir E Tjønnfjord, Pål A Holme

Haemophilia : the official journal of the World Federation of Hemophilia 2024 Jan

filter terms:

The 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. To explore HRQoL and PA in patients with moderate haemophilia A (MHA) and B (MHB). A 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. We 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). Haemophilic 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. © 2023 The Authors. Haemophilia published by John Wiley & Sons Ltd.

Citation

Ragnhild J Måseide, Erik Berntorp, Jan Astermark, Anna Olsson, Maria Bruzelius, Tony Frisk, Vuokko Nummi, Riitta Lassila, Geir E Tjønnfjord, Pål A Holme. Health-related quality of life and physical activity in Nordic patients with moderate haemophilia A and B (the MoHem study). Haemophilia : the official journal of the World Federation of Hemophilia. 2024 Jan;30(1):98-105