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Physical therapy and imaging outcome measures in a haemophilia population treated with factor prophylaxis: current status and future directions

Manco-Johnson, MJ ; Pettersson, Holger LU ; Petrini, P ; Babyn, PS ; Bergstrom, BM ; Bradley, CS ; Doria, AS ; Feldman, BM ; Funk, S and Hilliard, P , et al. (2004) In Haemophilia 10. p.88-93
Abstract
Routine infusions of factor VIII to prevent bleeding, known as prophylaxis, and other intensive therapies are being more broadly applied to patients with haemophilia. These therapies differ widely in replacement product usage, cost, frequency of venous access and parental effort. In order to address residual issues relating to recommendations, implementation, and evaluations of prophylaxis therapy in persons with haemophila, a multinational working group was formed and called the International Prophylaxis Study Group (IPSG). The group was comprised of haemophilia treaters actively involved in studies of prophylaxis from North America and Europe. Two expert committees, the Physical Therapy (PT) Working Group and the Magnetic Resonance... (More)
Routine infusions of factor VIII to prevent bleeding, known as prophylaxis, and other intensive therapies are being more broadly applied to patients with haemophilia. These therapies differ widely in replacement product usage, cost, frequency of venous access and parental effort. In order to address residual issues relating to recommendations, implementation, and evaluations of prophylaxis therapy in persons with haemophila, a multinational working group was formed and called the International Prophylaxis Study Group (IPSG). The group was comprised of haemophilia treaters actively involved in studies of prophylaxis from North America and Europe. Two expert committees, the Physical Therapy (PT) Working Group and the Magnetic Resonance Imaging (MRI) Working Group were organized to critically assess existing tools for assessment of Joint outcome. These two committees independently concluded that the WFH Physical Examination Scale (WFH PE Scale) and the WFH X-ray Scale (WFH XR Scale) were inadequately sensitive to detect early changes in Joints. New scales were developed based on suggested modifications of the existing scales and called the Haemophilia joint Health Score (HJHS) and the International MRI Scales. The new scales were piloted. Concordance was measured by the intra-class correlation coefficient of variation. Reliability of the HJHS was excellent with an inter-observer co-efficient of 0.83 and a test-retest value of 0.89. The MRI study was conducted using both Denver and European scoring approaches; inter-reader reliability using the two approaches was 0.88 and 0.87; test-retest reliability was 0.92 and 0.93. These new PT and MRI scales promise to improve outcome assessment in children on early preventive treatment regimens. (Less)
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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
physical examination, haemophilia, joint assessment, MR imaging
in
Haemophilia
volume
10
pages
88 - 93
publisher
Wiley-Blackwell
external identifiers
  • wos:000226143400015
  • scopus:19944370777
  • pmid:15479378
ISSN
1351-8216
DOI
10.1111/j.1365-2516.2004.00978.x
language
English
LU publication?
yes
id
b43a6f53-978b-4497-990c-abc749a9e335 (old id 256162)
date added to LUP
2016-04-01 11:43:59
date last changed
2022-07-07 22:33:14
@article{b43a6f53-978b-4497-990c-abc749a9e335,
  abstract     = {{Routine infusions of factor VIII to prevent bleeding, known as prophylaxis, and other intensive therapies are being more broadly applied to patients with haemophilia. These therapies differ widely in replacement product usage, cost, frequency of venous access and parental effort. In order to address residual issues relating to recommendations, implementation, and evaluations of prophylaxis therapy in persons with haemophila, a multinational working group was formed and called the International Prophylaxis Study Group (IPSG). The group was comprised of haemophilia treaters actively involved in studies of prophylaxis from North America and Europe. Two expert committees, the Physical Therapy (PT) Working Group and the Magnetic Resonance Imaging (MRI) Working Group were organized to critically assess existing tools for assessment of Joint outcome. These two committees independently concluded that the WFH Physical Examination Scale (WFH PE Scale) and the WFH X-ray Scale (WFH XR Scale) were inadequately sensitive to detect early changes in Joints. New scales were developed based on suggested modifications of the existing scales and called the Haemophilia joint Health Score (HJHS) and the International MRI Scales. The new scales were piloted. Concordance was measured by the intra-class correlation coefficient of variation. Reliability of the HJHS was excellent with an inter-observer co-efficient of 0.83 and a test-retest value of 0.89. The MRI study was conducted using both Denver and European scoring approaches; inter-reader reliability using the two approaches was 0.88 and 0.87; test-retest reliability was 0.92 and 0.93. These new PT and MRI scales promise to improve outcome assessment in children on early preventive treatment regimens.}},
  author       = {{Manco-Johnson, MJ and Pettersson, Holger and Petrini, P and Babyn, PS and Bergstrom, BM and Bradley, CS and Doria, AS and Feldman, BM and Funk, S and Hilliard, P and Kilcoyne, R and Lundin, Björn and Nuss, R and Rivard, G and Schoenmakers, MAGC and Van den Berg, M and Wiedel, J and Zourikian, N and Blanchette, VS}},
  issn         = {{1351-8216}},
  keywords     = {{physical examination; haemophilia; joint assessment; MR imaging}},
  language     = {{eng}},
  pages        = {{88--93}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Haemophilia}},
  title        = {{Physical therapy and imaging outcome measures in a haemophilia population treated with factor prophylaxis: current status and future directions}},
  url          = {{http://dx.doi.org/10.1111/j.1365-2516.2004.00978.x}},
  doi          = {{10.1111/j.1365-2516.2004.00978.x}},
  volume       = {{10}},
  year         = {{2004}},
}