1. National Pain Study Michelle Witkop, DNP,FNP-BC 2 Angela Lambing, MSN, NP-C 1 George Divine, PhD Biostatistics 1 George Divine, PhD Biostatistics 1 Ellen Kachalsky, L-MSWC 1 Ellen Kachalsky, L-MSWC 1 Dave Rushlow, L-MSW 2 Dave Rushlow, L-MSW 2 Jane Dinnen, RN 2 Jane Dinnen, RN 2 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 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 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 Describe the strategies utilized to control pain Determine who currently provides pain management 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 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 Identify pain management strategies utilized by bleeding disorders community

4. Method Built upon regional pain study: Region V-East; Michigan, Indiana, Ohio Built upon regional pain study: Region V-East; Michigan, Indiana, Ohio Descriptive prospective study Descriptive prospective study Pain Study entry available between: October 2006 – February 2009 Pain Study entry available between: October 2006 – February 2009 –Website: www.henryford/painstudy 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 Inclusion criteria –> 18 years of age –Bleeding disorder  Hemophilia  von Willebrand’s disease –Able to speak/read English or Spanish Marketing 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 1,104 questionnaires received –123 excluded due to incomplete data –217 von Willebrand’s disease –764 hemophilia A or B Convenience sample Convenience sample 42.15-years (range18-84-years) 42.15-years (range18-84-years) Male(97%) Male(97%)

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

8. Demographics Education level College58% Technical school 15% Secondary school: gr 12 20% Primary school: gr 8 7%EthnicityCaucasian86% African American 5% Hispanic2% Asian2% Middle Eastern 2% American Indian 1%

9. Demographics Work Employed full time 46% Employed part time 7% Retired15% Disabled26% Student6% Marital Status Married56% Single33% Divorced10% Widowed1%

10. Hemophilia Severity

11. Reported Pain Levels Average daily acute pain level 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 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 39% of respondents felt their pain was NOT well treated

12. Reported pain by severity Severity of Hemophilia Average Chronic Pain Average Acute Pain Mild3.885.09 Moderate4.435.68 Severe4.256.17

13. Pain Descriptors

14. Oral Pain Medications Utilized

15. Non-Pharmacological Treatments

17. Providers Utilized for Pain Management

18. Quality of Life Scores – Hemophilia VariableScore Mental Health 65.79 Social Functioning 61.11 Physical Functioning 53.04 Emotional Problems 50.83 Health Perception 49.43 Health Change 49.05 Pain48.39 Energy/Fatigue44.06 Physical Problems 30.99

19. QOL Scores by Severity VariableMildModerateSevere Stat Sig Physical Functioning 69.562.647.5 *Mild vs Severe *Mod vs Severe Social Functioning 68.868.058.0 *Mild vs Severe *Mod vs Severe Physical Problems 58.634.624.3 *Mild vs Severe Emotional Problems 64.356.446.8 *Mild vs Severe Mental Health 66.164.666.0 Energy/Fatigue45.446.943.2 Pain62.551.844.7 *Mild vs Severe Health Perception 62.050.446.5 *Mild vs Severe Health Change 48.743.650.3 *P < 0.001

20. Study Limitations Convenience sample Convenience sample Not all regions adequately represented Not all regions adequately represented Not accounted for languages other than English or Spanish Not accounted for languages other than English or Spanish Computerized website access did not have drop down choices 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 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 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 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 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; 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. 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 Only 85% of patients are using factor to treat acute pain associated with a bleed The RICE message is not optimally utilized. The RICE message is not optimally utilized. Physical therapy remains under-utilized for the management of acute (27%) and persistent pain (32%) 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%) 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: Despite acute/chronic pain, persons with hemophilia still have positive QOL issues related to: –physical functioning, –social functioning, –mental health.

23. Conclusions Further studies 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 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 The bleeding disorders community needs to work towards evidenced based pain management strategies for persons with bleeding disorders