The IPSG PT Expert Working group held their 1st meeting during the IPSG meeting in November, 2002. At this meeting, the group planned to harmonize existing joint health scores (WFH, Colorado, and Stockholm) to develop a more sensitive tool. The following year, a new consensus measure was developed called the Hemophilia Joint Health Score (HJHS) version 1.0; an 11-item scoring tool for assessing joint impairment in children ages 4 to 18 years.
In 2003 the physiotherapists conducted a reliability study of the new combined score called the Hemophilia Joint Health Score (HJHS), and were later that year awarded The Bayer Hemophilia Awards Program: Hemophilia Caregiver Education Award (2004 – 2005) for the development of an instructional video and manual.
The IPSG PT group was awarded the Bayer Hemophilia Awards Program: Special Project Award 2005 – 2007 ($195,000.00 US) to conduct an international multi-centre trial to validate the HJHS. The work pertaining to the development and testing of the HJHS was presented at various workshops and sessions of the World Federation of Hemophilia. In 2010, the study manuscript titled “Validation of a new pediatric joint scoring system from the International Hemophilia Prophylaxis Study Group: Validity of the Hemophilia Joint Health Score (HJHS)” was submitted and accepted for publication in Arthritis Care & Research.
Results of the validation study led to revisions/modifications to the HJHS version 1.0. As a result, redundant items such as instability, and gait scoring per joint were deleted. In addition, axial alignment continued to be recorded but not scored. Subsequently, the HJHS 2.0 and 2.1 were developed and the Instructional manual, worksheets, and score sheet were updated to reflect the new revisions.
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Hemophilia Joint Health Score (HJHS)
Initial development of the Hemophilia Joint Health Score (HJHS) began in 2002. At the invitation of the International Prophylaxis Study Group, an international group of experienced physiotherapists and physicians convened in Toronto, Canada. They began discussion about developing a new assessment tool. Three scoring systems served as the basis for this evaluation tool...
|Physical Therapy Expert Working Group|
|Dr. Janjaap van der Net||(Netherlands) [Co-Chair]|
|Dr. Sharon Funk||(USA) [Co-Chair]|
|Dr. Pia Petrini||(Sweden)|
|Dr. Marilyn Manco-Johnson||(USA)|
|Dr. Brian Feldman||(Canada)|
|Dr. Jean St-Louis||(Canada)|