BDBS-16 Reduce the proportion of persons with hemophilia who develop reduced joint mobility due to bleeding into joints

National Data Source
Universal Data Collection System (UDC); Centers for Disease Control and Prevention, National Center for Birth Defects and Developmental Disabilities (CDC/NCBDDD)
Changed Since the Healthy People 2020 Launch
No
Measure
percent 
Baseline (Year)
82.9 (2008)
Target
74.6
Target-Setting Method
10 percent improvement
Numerator
Number of UDC enrollees with a diagnosis of hemophilia, who have 10% or greater reduction in the range of motion (ROM) of either shoulder, elbow, hip, knee, or ankle joints during the year of interest compared to the expected normal range of motion for their age, and who at the time of ROM measurement were free of any other restriction such as recent surgery, having a cast, undergone joint fusion at any time, etc.
Denominator
Total number of UDC enrollees with the diagnosis of hemophilia and free of any joint restrictions as described in the numerator.
Data Collection Frequency
Annual
Comparable Healthy People 2010 Objective
Not applicable

Comments

Methodology Notes

Universal Data Collection (UDC) item 6; if either of the two sub-items (FVIII, FIX) is checked it will constitute a diagnosis of hemophilia. Data collected on the annual visit form item 35 during the year of interest will constitute the measured ROM. The UDC data are collected from consenting patients who receive treatment for a bleeding disorder at any of about 130 federally funded Hemophilia Treatment centers (HTCs). Over 20,000 patients with bleeding disorders receive care at HTCs and around 85% of those who receive care at HTCs participate in UDC.

References and More Information

  1. Iris Plug, Marjolein Peters, Eveline P. Mauser-Bunschoten, Arja de Goede-Bolder, Lily Heijnen, Cees Smit, José Willemse, Frits R. Rosendaal and Johanna G. van der Bom. Social participation of patients with hemophilia in the Netherlands. Blood 2008; 111:1811-1815.