1. Study of physical function in adolescents with haemophilia: The SO-FIT study.
- Author
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Khair, K., Holland, M., Bladen, M., Griffioen, A., McLaughlin, P., Mackensen, S., Wilkinson, Melanie, Basingstoke, Anna Wells, Charles, Lisa, Bingham, Gordon, Harvey, Andrew, Harbridge, Hannah, Emmitt, Shaun, Stephensen, David, Ward, June, Hook, Susan, Reid, Jenna, Preston, Suzanne, Flannery, Thuvia, and South, Anne
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HEMOPHILIA , *CHILDREN'S health , *HEALTH outcome assessment , *MEDICAL care , *PUBLIC health - Abstract
Introduction Contemporary haemophilia care demands Patient-Reported Outcomes. SO- FIT is a UK multi-centre study, assessing self-reported function, health-related quality of life ( HRQoL) and joint health in boys with severe haemophilia. Methods Subjective physical function (PedHAL, HEP-Test-Q) and HRQoL (Haemo-QoL Short Form [SF]) were assessed alongside joint health using the objective Haemophilia Joint Health Score (HJHS v2.1). Demographic and clinical data were collected. Results Data from 127 boys mean age 12.38 ± 2.5 (range 8-17) treated at 16 sites were analysed. One-hundred-and-thirteen had haemophilia A, 25/9 past/current inhibitor, 124 were treated prophylactically (46.8% primary) and three on-demand. In the preceding 6 months, boys reported median 0 joint bleeds (range 0-8) with a median HJHS score of 1 (range 0-30). Boys reported good physical functioning; HEP-Test-Q (M = 80.32 ± 16.1) showed the highest impairments in the domain 'endurance' (72.53 ± 19.1), in Ped HAL (M = 85.44 ± 18.9) highest impairments were in the domains 'leisure activities & sports' (M = 82.43 ± 23.4) and 'lying/sitting/kneeling/standing' (M = 83.22 ± 20.3). Boys reported generally good HRQoL in Haemo-QoL SF SF (M = 22.81 ± 15.0) with highest impairments in the domains 'friends' (M = 28.81 ± 30.5) and 'sports & school' (M = 26.14 ± 25.1). HJHS revealed low correlations with the Haemo-QoL SF ( r = .251, P < .006), the PedHAL ( r = −.397, P < .0001) and the HEP-Test-Q ( r = −.323, P < .0001). A moderate correlation was seen between HEP-Test-Q and Haemo-QoL SF of r = −.575 ( P < .0001) and between Ped HAL and Haemo-QoL SF r = −.561 ( P < .0001) implying that good perceived physical function is related to good HRQoL. Conclusions The SO- FIT study has demonstrated that children with severe haemophilia in the UK report good HRQoL and have good joint health as reflected in low HJHS scores. [ABSTRACT FROM AUTHOR]
- Published
- 2017
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