N.B. These scores are posted with the permission of the developers.
The Functional Independence Score in Hemophilia (FISH) was developed as a performance-based assessment tool to objectively measure an individual’s functional ability. It is intended to measure what the person with disability actually does, not what he ought to be able to do, or might be able to do if circumstances were different, or thinks he can do. It can also be used to evaluate change in functional independence over time, or after a therapeutic intervention.
The FISH is relatively safe to perform. It is meant to complement other scores that measure body structure and function, such as clinical joint evaluation scores and radiological scores. Its major advantage is that it can be used with persons of different linguistic abilities, as it is an objective, performance-based instrument.
The FISH incorporates items that are perceived as important by persons with hemophilia. Patients with hemophilia, their relatives, and therapists were asked to list activities of daily living that were affected by the condition. Activities that were considered unsafe to perform were excluded from the assessment. Other activities such as education, employment, and participation in social events that could not be assessed objectively in the clinic were also excluded.
The current version of FISH includes the assessment of eight activities: eating, grooming, dressing, chair transfer, squatting, walking, step climbing, and running. Each activity is graded according to the amount of assistance required to perform it. The level of independence for each activity is clearly defined to reduce inter-observer variance.
The FISH is the first performance-based score for assessment of musculoskeletal function in people with hemophilia. It was developed and validated in a group of patients who have significant arthropathy. It would therefore be useful in adolescents and adult patients who have not had access to prophylaxis.
It is recommended that the FISH be used in conjunction with other self-reported tools like the Haemophilia Activities List (HAL), if contextually relevant and useful. It is known from the literature that both types of instruments measure different constructs of physical functioning and the two types of scores complement each other.
The FISH was originally designed to compare the patient’s basic functional ability with that of normal healthy individuals. The current version therefore has a ceiling effect when applied to those with minimal musculoskeletal changes.
It was not designed to assess challenging activities in individuals with relatively “normal functional ability” for activities of daily living. A new version that will incorporate these challenges is being developed to assess patients with otherwise near-normal musculoskeletal function to improve its utility in the assessment of such patients.
Time to complete: 12-15 minutes, once the evaluator is well familiarized with the tool.
Training required: Any trained therapist or clinician can administer the FISH. The person administering the test should read the complete instructions prior to scoring the activity.
Scoring/scaling and interpretation of results: Each activity should be scored only after observing the subject performing the task, and not based on their subjective ability. For some of the tasks, the required action may be simulated in the clinic and not actually performed. Each activity is graded from 1 to 4 according to the amount of assistance required to perform the activity. The maximum possible score is 32.
The psychometric properties of FISH were studied in a population of 63 persons with hemophilia from India, aged between 7 and 40.
Construct validity: The FISH has a reasonable correlation with the WFH Physical Examination Score (-0.61) and Pettersson’s radiological score (-0.38).The face validity and content validity are good, as the activities were selected by persons with hemophilia, their relatives, and therapists.
Criterion validity: The FISH correlates well with other tests of functional ability such as the Stanford Health Assessment Questionnaire (HAQ) (r=-0.75), the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) (r=-0.66), and the Haemophilia Activities List (HAL) (r =-0.66).
Reliability: The FISH has high internal consistency (Cronbach’s alpha of 0.85). The pooled intra-class correlation was calculated using six recordings of six observers on two occasions. The FISH has excellent reliability (ICC=0.98).
Responsiveness/sensitivity: The FISH was found to be responsive to changes in treatment following correction of joint deformities in a subset of patients that were assessed (standardized responsive mean of -1.93).
The tool does not need to be translated for the patient as it is an objective, performance-based assessment tool. It is currently available in English for the therapist. An Italian version is under development.
Groups tested with this measure:
Cross-cultural validation has been assessed in 90 patients from Mexico, including 60 children (aged 5-16 years) with mild, moderate, and severe hemophilia (Tlacuilo-Parra, 2010; Gruppo, 2010).
Trials are currently under way at hemophilia centres in Romania and Italy.
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