Contemporary haemophilia health care demands collection of Patient-Reported Outcomes (PROs) evaluating patient’s views of care and health.

The Study Of physical Function In adolescenTs with haemophilia (SO-FIT) is a UK multi-centre, cross sectional study, that assessed self-reported function and health-related quality of life (HRQoL) of children and teenagers with severe haemophilia compared with objective assessment of joint function.

This National Institute for Health Research supported study was conducted by nurses and physiotherapists in 16 haemophilia centres in the UK, funded by a medical education grant from Pfizer UK.

In all, data were collected from 127 boys with mean age 12.26±2.6 (range 8-17) from 16 sites were enrolled. 110 had severe haemophilia A, 13 haemophilia B; 26/9 with past/current inhibitor. 120 boys were treated with prophylaxis (42.5% primary, 54% secondary) and 3 were treated on demand. The median HJHS score was 1 (range 0-37). In the preceding 6 months boys reported median 0 joint bleeds (range 0-8).

Boys reported good subjective physical functioning in:

  • the Hep-Test-Q (M=79.88±16.2) with highest impairments in the domain ‘endurance’ (72.05±19.2)
  • the PedHAL (M=84.98 ±19.0) with highest impairments in the domains ‘leisure activities & sports’ (M=81.85±23.6) and ‘sitting/kneeling/standing’ (M=82.75±20.5).

Boys reported generally good health-related quality of life in:

  • the Haemo-QoL short version (M=23.09±15.1) with highest impairments in the domains ‘friends’ (M=27.22±29.9), ‘sport & school’ (M=26.44±25.4) and ‘treatment’ (M=26.32±21.43).

There was high correlation between the two subjective measures of physical functioning (HEP-Test-Q, PedHAL) of r=.583 (p<.0001). A high correlation was seen between subjective physical functioning (Hep-Test-Q) and HRQoL (Haemo-QoL) of r=-.531 (p<0.0001) and moderate correlation between PedHAL and Haemo-QoL r=-.454 (p<0.0001) implying that good physical function is related to low impairment in HRQoL.

The SO-FIT study has demonstrated that children with severe haemophilia in the UK generally report good health-related quality of life and subjective physical functioning. This is also reflected in objective assessment of joint health.

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