Psychometric analysis of the Functional Independence Score in Haemophilia (FISH)

Poonnoose, Pradeep Mathew; Thomas, Robert A.; Keshava, Shyamkumar N.; Cherian, R.; Padankatti, SM; Pazani, D; Kavitha, M.; Devadarasini, M.; Bhattacharji, Sara; Viswabandya, Auro; John, J. A.; Macaden, Ashish; Mathews, Vikram; Srivastava, Alok

doi:10.1111/j.1365-2516.2007.01508.x

Cited by 70 publications

(92 citation statements)

References 25 publications

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“…The FISH measures the patient independence in performing activities of self-care, transfers, and mobility; it has been assessed in pediatric populations with severe hemophilia, showing good internal consistency (Cronbach's alpha ¼ 0.85), good correlation with other self-rated functional score, such as the Stanford Health Assessment Questionnaire (r ¼ À0.75), the Western Ontario and McMaster Universities Osteoarthritis Index (r ¼ À0.66), and the HAL (r ¼ À0.66) but it had only moderate correlation with the WFH clinical score (r ¼ À0.61) and the Pettersson score (r ¼ À0.44) [19].…”

Section: Discussionmentioning

confidence: 99%

Functional independence score in hemophilia: A cross‐sectional study assessment of Mexican children

Tlacuilo‐Parra¹,

Villela-Rodriguez²,

Garibaldi-Covarrubias³

et al. 2009

Pediatric Blood & Cancer

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BackgroundThe Functional Independence Score in Hemophilia (FISH) is a performance‐based assessment tool used to measure the patients functional ability so far only used in patients with severe hemophilia. Its aim is to determine if FISH is useful in patients with mild and moderate disease.ProcedureIn a cross‐sectional study 90 children 60 hemophilic and 30 sex‐, race‐, and age‐matched healthy males were assessed. Patients between 5 and 16 years of age were selected each patient was evaluated in seven activities under three categories: self‐care (grooming and eating, bathing, and dressing), transfers (chair and squat), and locomotion (walking and step climbing). Each activity was graded from 1 to 4 according to the amount of assistance required to perform the activity with total scores ranging from 7 to 28.ResultsAs a whole, the mean age of the patients was 10.0 ± 3.4 years with a mean FISH of 25.8 ± 3.6 (range 15–28). There were no differences in the FISH between healthy males and patients with mild hemophilia; however, the score was significantly higher in patients with mild hemophilia (28 ± 0) than patients with moderate (26.2 ± 2.5; P = 0.004) or severe hemophilia (24.0 ± 4.7; P = 0.0006). The most affected activities were squatting, walking, and step climbing.ConclusionsA significant decrease in functional ability was demonstrated according to the severity of hemophilia, especially for those activities involving weight‐bearing demands like locomotion and step climbing. Of seven activities evaluated, changes were observed in the group with moderate and severe hemophilia, but no changes detected in patients with mild disease. Pediatr Blood Cancer 2010;54:394–397. © 2009 Wiley‐Liss, Inc.

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Section: Discussionmentioning

confidence: 99%

Functional independence score in hemophilia: A cross‐sectional study assessment of Mexican children

Tlacuilo‐Parra¹,

Villela-Rodriguez²,

Garibaldi-Covarrubias³

et al. 2009

Pediatric Blood & Cancer

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“…Of the 42 questions, many deal with joint-related limitations from lower extremities, and it could be possible to reduce the number of questions and still capture the difficulties from the lower extremities. Worldwide, HTCs use many kinds of instruments classified in the ICF as impairment and activity assessments, such as the Haemophilia Joint Health Scores (HJHS) to evaluate joint status and global gait (walking, running, climbing stairs and jumping on one leg) (26), assessing performance in activities of daily living (ADL) using the Functional Independent Scale of Haemophilia (FISH) (27) and different questionnaires measuring HRQoL (28). Also, national registries are more and more commonly used to evaluate medical treatment, and require patient input and views around activity and participation as well as QoL to be considered when evaluating treatment options.…”

Section: Discussionmentioning

confidence: 99%

Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years

Brodin¹,

Hadžibajramović²,

Baghaei³

et al. 2018

J Rehabil Med

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LAY ABSTRACTCompared with the very recent past, persons with haemophilia currently living in Sweden have the opportunity to have prophylactic treatment to avoid frequent bleeding episodes in their joints and muscles. This makes it easier to live an active life. Using a questionnaire on self-reported activity, younger adults reported fewer difficulties than older persons. Over time the older persons reported increased difficulties in some of the more complex activities, such as playing games, sports, and going on active holidays. One reason could be that the older persons had no medical treatment when they were young so they had arthropathy due to bleeding in their childhood, perhaps combined with problems due to ageing. It is important to capture the person's own perspective of their abilities at their annual check-up.Objectives: To describe self-reported activity using the Haemophilia Activity List (HAL) for Swedish adults with haemophilia and to detect any changes over time. Method: The HAL was sent to the adult population with haemophilia A and B, moderate and severe form, living in Sweden (n = 260). Participants completed the HAL and a questionnaire on sociodemographic and medical information. From a previous study cohort, 61 persons had responded twice to the HAL. The investigated group was divided into early and later treatment onset groups with regard to access to medication. Results: The response rate was 50%. There was a significant difference (p < 0.001) between the early and later treatment groups in all domains in HAL. When analysing HAL "question by question" from the 2 reported time-points, the most prominent outcome was that the reported ability in activities was stable over time at the group level, except for participants who had no access to the clotting factor early in life. They reported greater limitations in some of the activities in the challenging domain "leisure activities and sport". Conclusion:The early treatment group reported a significantly better ability in all activities compared with the late treatment group.

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“…It can evaluate changes in functional independence and takes into account daily-life activities that could be affected by haemophilia. It is relatively easy to administer, does not require special training and has demonstrated high internal consistency and excellent reliability [11][12][13][14] [42][43][44], and is currently being modified for use in children. Despite these strengths, the instrument has several limitations.…”

Section: Functional Assessmentmentioning

confidence: 99%

Recognizing the need for personalization of haemophilia patient‐reported outcomes in the prophylaxis era

et al. 2016

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The safety and efficacy of treatment options for patients with haemophilia have significantly improved over the last two decades, particularly with greater utilization of prophylactic approaches. Consequently, it is becoming increasingly difficult to differentiate the treatment benefits of available choices based on standard endpoints such as annualized bleeding rates and joint health scores. Patient-reported outcomes (PROs) have shown limited ability to discriminate between treatment outcomes, in part because of their comprehensive nature; i.e. differences in specific outcomes meaningful to individual patients are masked by a global scoring system based on a fixed set of items, many of which may be unimportant for any given patient. There is a clear need for new outcome measures. Initiatives to develop patient-centric outcomes that capture clinically meaningful change are ongoing. One such approach, goal attainment scaling (GAS), allows patients, in collaboration with a trained clinician, to select goals from a medical condition-specific menu of options and subsequently facilitates quantitative assessment of goal realization. Thus, it is fully personalized and sensitive to small, often idiosyncratic, treatment benefits, such as improvements in functional capacity. In this paper, we present the underlying rationale for GAS and one other novel approach to PRO personalization, and discuss their potential to augment current outcome measures by reliably detecting and quantifying treatment effects in individuals with haemophilia on prophylaxis.

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Psychometric analysis of the Functional Independence Score in Haemophilia (FISH)

Cited by 70 publications

References 25 publications

Functional independence score in hemophilia: A cross‐sectional study assessment of Mexican children

Functional independence score in hemophilia: A cross‐sectional study assessment of Mexican children

Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years

Recognizing the need for personalization of haemophilia patient‐reported outcomes in the prophylaxis era

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