Functional Independence Score in Haemophilia: a new performance‐based instrument to measure disability

Poonnoose, P. M.; Manigandan, C.; Thomas, Robert A.; Shyamkumar, NK; Kavitha, M.; Bhattacharji, Sara; Srivastava, Alok

doi:10.1111/j.1365-2516.2005.01142.x

Cited by 97 publications

(125 citation statements)

References 18 publications

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“…Van Genderen et al [18] developed the HAL, a self-assessment questionnaire to assess disability in hemophilia, however, it has been validated only for use in adults and Poonnoose et al [10] developed the FISH, a performance-based assessment tool, to objectively measure the patients' functional ability. Both measures appear to be promising disease-specific instruments.…”

Section: Discussionmentioning

confidence: 99%

“…In fact, the FISH assessment was developed in India where most patients receive factor replacement only for bleeds that cause significant pain. The total amount of factor used annually is usually between 50 and 150 IU/kg/year [10]. In Mexico, the factor usage ranges between 530 and 817 IU/kg/year which are still relatively low [7].…”

Section: Discussionmentioning

confidence: 99%

“…The World Federation of Hemophilia (WFH) score [8] and the Colorado score [9] are instruments to be used in children, but these tools have to be assessed by experienced physicians. Poonnoose et al [10] developed the Functional Independence Score in Hemophilia (FISH), a performance-based assessment tool to objectively measure the patient's functional ability that can be easily administered by a trained nurse, doctor, or therapist.…”

Section: Introductionmentioning

confidence: 99%

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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%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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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

View full text Add to dashboard Cite

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“…It has good face validity, as the items were selected from a list of activities that were felt to be relevant by both therapists and patients. As the measurement is based on performance and assessed by trained healthcare personnel, problems associated with subjective assessment, language and literacy can be minimized [9].…”

Section: Introductionmentioning

confidence: 99%

A comparison between MRI, sonography and Functional Independence Score in Haemophilia methods in diagnosis, evaluation and classification of arthropathy in severe haemophilia A and B

Tasbihi

Pishdad

Haghpanah

et al. 2016

Blood Coagulation &Amp; Fibrinolysis

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Evaluation of joints in children with haemophilia is important in detecting abnormalities, staging their severity and following the effects of treatment. The aim of this study is to evaluate the correlation of FISH score (Functional Independence Score in Haemophilia) with the scores obtained by MRI and sonography for the diagnosis, evaluation and classification of arthropathy in severe haemophilia. In this cross-sectional study on 25 severe haemophilia patients, FISH, MRI and sonography procedures were performed in the elbow or knee joint. All patients' information, including age, type of haemophilia, affected joint, scores of MRI, sonography and FISH, dose of factor consumed, weight and prophylaxis protocol were collected and analysed. Among the 25 patients (age range of 11-70 years), 22 patients were haemophilia A and three patients were haemophilia B. Affected joints were right knee in 12 patients, left knee in nine and right elbow in four. There was only a statistically significant negative correlation between FISH and MRI Additive (A) scale (rs = -0.537, P = 0.006). Considering cartilage loss domain (related MRI A scale: 13-20), 20 patients (80%) were classified in this group with FISH scores ranged from 17 to 22. On the basis of our results, FISH scores in severe haemophilia patients were negatively correlated with MRI A scale. Also, it seems that a FISH score less than 22 could be considered as loss of cartilage; however, due to the small number of our patients, it needs further assessment in different populations.

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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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Functional Independence Score in Haemophilia: a new performance‐based instrument to measure disability

Cited by 97 publications

References 18 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

A comparison between MRI, sonography and Functional Independence Score in Haemophilia methods in diagnosis, evaluation and classification of arthropathy in severe haemophilia A and B

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

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