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National Pain Study

National Pain Study. Michelle Witkop, DNP,FNP-BC 2 Angela Lambing, MSN, NP-C 1 George Divine, PhD Biostatistics 1 Ellen Kachalsky, L-MSWC 1 Dave Rushlow, L-MSW 2 Jane Dinnen, RN 2 1 Henry Ford Health System, Detroit, MI 2 Northern Region Bleeding Disorders, Traverse City, MI.

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National Pain Study

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  1. National Pain Study Michelle Witkop, DNP,FNP-BC 2 Angela Lambing, MSN, NP-C1 George Divine, PhD Biostatistics1 Ellen Kachalsky, L-MSWC1 Dave Rushlow, L-MSW2 Jane Dinnen, RN2 1 Henry Ford Health System, Detroit, MI 2 Northern Region Bleeding Disorders, Traverse City, MI Sponsored by: Wyeth, Hemophilia Health Services

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

  3. Study Objectives • 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 utilized by bleeding disorders community

  4. Method • 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

  5. Method: cont’d • 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

  6. Results • 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%)

  7. Region I Region X Region V West Region II Region V East Region VII Region III Region VIII Region IV North Region IX Region IV South Region VI Subjects represented by Region 57 14 49 60 224 29 53 77 85 34 30 44

  8. Demographics

  9. Demographics

  10. Hemophilia Severity

  11. 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

  12. Reported pain by severity

  13. Pain Descriptors

  14. Oral Pain Medications Utilized

  15. Non-Pharmacological Treatments

  16. Non-Pharmacological Treatments

  17. Providers Utilized for Pain Management

  18. Quality of Life Scores – Hemophilia

  19. QOL Scores by Severity *P < 0.001

  20. Study Limitations • 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

  21. Discussion • Most respondents were Caucasian, married, well educated, work full time, & have severe hemophilia • Despite a reported average chronic daily pain level of 4.22/10, 39% respondents felt their pain was not well controlled • Patients have difficulty distinguishing acute vs chronic pain as they use similar descriptors to describe their pain • Use of factor for chronic pain (58%) • Use of factor for acute pain (84%) • Patients see their HTC/Hematologist (58%) or a pain clinic (32%) for pain managment

  22. Discussion • Acetaminophen is still the most commonly used medication in acute pain situations in the majority of regions despite; • Continued report of acute pain levels of 4.22/10 • High incidence of hepatitis C in the bleeding disorder population • NSAIDs continue to be used despite the bleeding risk in this population. • Only 85% of patients are using factor to treat acute pain associated with a bleed • 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 and alcohol for pain control; (0-30%) • Despite acute/chronic pain, persons with hemophilia still have positive QOL issues related to: • physical functioning, • social functioning, • mental health.

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

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