
Compendio de herramientas de valoración
La hemofilia es una enfermedad poco común y su tratamiento presenta múltiples facetas. Con avances en la atención médica como
Year:
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Author(s): compendium,
Format: Document
Authors/developers
Feldman BM, Funk S, Hilliard P, Van Der Net J, Zourikian N, Berstrom B-M, Engelbert RHH, Abad A, Petrini P, Manco-Johnson M, and the International Prophylaxis Study Group.
In order to access the HJHS Toolkit materials registration is required on: https://ipsg.ca/hjhs-portal. For general information on the background and development of the HJHS, please visit the IPSG website at: www.ipsg.ca.
The HJHS measures joint health, in the domain of body structure and function (i.e. impairment), of the joints most commonly affected by bleeding in hemophilia: the knees, ankles, and elbows.
It is primarily designed for children with hemophilia aged 4-18 years with mild joint impairment (e.g. treated with prophylaxis). It can be used when there is a need for orthopedic intervention, or as an outcome measure of physiotherapy interventions.
Contact person(s):
International Prophylaxis Study Group, [email protected]
Date of this review:
February 07, 2011
Overall utility:
The HJHS is a physical examination assessment tool sensitive enough to pick up the subtle early signs of joint damage. It is appropriate for monitoring joint change over time or assessing efficacy of treatment regimens in children receiving both prophylactic and on-demand therapy.
Limitations:
The HJHS takes a long time to administer. It has not yet been adequately studied for use in adults, more severe joint disease, or in very young children.
Training required: Instruction manual, worksheets, score sheet, addendums and video are available on www.ipsg.ca. The instruction manual is available in English, French (France), Spanish (Spain), and German (Germany).
Please contact [email protected] if you do not receive an approval email within 48 hours of submitting your registration.
NOTE: It is recommended that you add [email protected] to your safe list.
Psychometric properties:
It correlates appropriately with bleeding rates (rs=0.50) and physician global assessment of joint health (rs=0.42). It correlates well with radiographic changes.
The validation of the HJHS version 1.0 led to the development of the HJHS 2.0 and 2.1. The HJHS 2.1 instruction manual includes a complete description of the differences between the versions of the tool.
Groups tested with this measure:
La hemofilia es una enfermedad poco común y su tratamiento presenta múltiples facetas. Con avances en la atención médica como
L’hémophilie est une maladie rare et sa prise en charge requiert l’intervention de plusieurs disciplines. Les progrès en médecine, y
World Federation of Hemophilia Physical Examination Score (also called the Gilbert Score) Authors/developersGilbert M, and the Orthopedic Advisory Committee of
Paediatric Haemophilia Activities List (PedHAL) v0.11 Authors/developersGroen W, Van der Net J, Helders P, Fischer K. Questionnaire – children’s version
Molecular and Clinical Markers for the Diagnosis and Management of Type 1 (MCMDM-1) VWD Bleeding Questionnaire Authors/developers: Tosetto A, Rodeghiero
Šrámek Bleeding Score Authors/developersŠrámek A, Eikenboom JCJ, Briet E, Vandenbroucke JP, Rosendaal FR Questionnaire and scoring key N.B.: These scores