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National Pain StudyMichelle Witkop, DNP, FNP, BC,1 Angela Lambing, MSN, NP-C,2 George Divine, PhD Biostats2, Ellen Kachalsky, L-MSWC2, Dave Rushlow, L-MSW,1 Jane Dinnen, RN, 1 1 Northern Regional Bleeding Disorders Center, Traverse City, MI; 2Henry Ford Health System, Detroit, MI;


Statement of the Problem

  • “Pain is an inevitable complication of repeated joints bleeds resulting in end stage joint disease”


  • The aim of this study seeks to:
    • Evaluate demographics of the population studied
    • Determine the language used by bleeding disorder patients in describing and distinguishing their experience of acute bleeding pain and chronic pain
    • Describe the strategies utilized to control pain
    • Determine who currently provides pain management
    • Determine the perceived effectiveness of current pain management therapies on quality of life using a standardized Quality of Life tool; SF-36
    • Identify pain management strategies
  • 1,104 questionnaires received
    • 123 excluded due to incomplete data
    • 217 von Willebrand’s disease
    • 764 hemophilia A or B
  • Convenience sample
  • 42.15-years (range18-84-years)
  • Male(97%)


  • Most respondents were Caucasian, married, well educated, work full time, & have severe hemophilia
  • With reported average chronic daily pain (4.22/10), over 1/3 of patients still reported their pain was not well treated (39%)
  • Respondents used similar word descriptors for acute/chronic pain; suggesting inability to tell the difference
  • Respondents reported lower than expected use of factor for acute bleeds (84%), and higher than expected use of factor to treat chronic pain (58%)
  • Patients see their HTC/Hematologist (58%) or a pain clinic (32%) pain management
  • Acetaminophen was the most commonly used medication for acute pain in the majority of regions despite reported acute pain levels of 5.97/10 & known high incidence of hepatitis C in the bleeding disorder population
  • NSAIDs continue to be used despite the bleeding risk in this population.
  • The RICE message is not optimally utilized.
  • Physical therapy remains under-utilized for the management of acute (27%) and persistent pain (32%)
  • Patients are using illicit drugs & alcohol for pain relief nationally but results varied by regions
  • Despite acute/chronic pain, persons with hemophilia reported positive QOL issues related to: physical functioning, social functioning, & mental health


  • Built upon regional pain study: Region V-East; Michigan, Indiana, Ohio
  • Descriptive prospective study
  • Pain Study entry available between: October 2006 – February 2009
    • Website: www.henryford/painstudy
    • Paper questionnaire
    • 1-800 phone number
      • Available 24/7 for completion of study questions
      • Spanish services
  • Inclusion criteria
    • > 18 years of age
    • Bleeding disorder
      • Hemophilia
      • von Willebrand’s disease
    • Able to speak/read English or Spanish
  • Marketing
    • NHF kick off: Philadelphia 2006
    • NFH 2007 Florida; Booth exhibit hall
    • Flyers to home infusion companies
    • Consumer magazines
  • Reported Pain Levels
  • Average daily acute pain level
    • Pain reported as a result of a joint bleed
    • 5.97/10 (SD +/- 2.14)
  • Average daily chronic pain level
    • Pain reported as a result of end stage joint disease
    • 4.22/10 (SD +/- 2.05)
  • 39% of respondents felt their pain was NOT well treated


  • Convenience sample
  • Not all regions adequately represented
  • Not accounted for languages other than English or Spanish
  • Computerized website access did not have drop down choices
    • Limit advancing questionnaire unless question answered


  • Further studies are needed to:
    • Examine differences in pain management between regions; severity of disease
    • Use of long acting opioids in hemophilia
    • Multimodal pain approach
  • Better education is needed for all persons involved in the bleeding disorders community
  • The bleeding disorders community needs to work towards evidenced based pain management strategies for persons with bleeding disorders