The Functional Independence Score in Haemophilia (FISH) is a standardized objective performance-based outcome measure of musculoskeletal function focused on activities of daily living (ADL). It measures the physical limitations of the patient through assessing their performance on eight well defined tasks. The FISH was developed in 2005 in response to the increasing awareness of the need for assessment of musculoskeletal function in people with haemophilia (PWH) beyond joint scores.
The conceptual framework guiding the development of the FISH is the International Classification of Functioning, Disability and Health (ICF), which was developed by the WHO (2001). The test items included in the FISH were based on suggestions from PWH or their families as well as health care professionals experienced in the management of haemophilia with particular focus on musculoskeletal dysfunction. Activities selected were aimed to assess the engagement of both upper and lower limbs with different degrees of dysfunction. Those activities which could hurt patients or could not be easily tested in the setting of most clinics were avoided.
The FISH is one of the first clinimetric instruments specific to haemophilia which quantified assessment of function through performance on activities, taking into account evaluation of musculoskeletal status of PWH beyond individual joints – clinical or radiological. This has helped define the impact of joint or muscle dysfunction on the lives of the PWH and plan patient focused therapeutic interventions accordingly. Being performance-based and administered by the therapist, FISH does not require linguistic validation for its application. Furthermore, as all test items are related to common ADLs, there are hardly any sociocultural limitations on its applicability around the world. The FISH is currently particularly designed for those PWH who have not received early regular clotting factor replacement therapy prophylaxis. An enhanced version of the FISH is being developed to overcome limitation of a ceiling effect in those with only minimal musculoskeletal dysfunction.