1. National Pain Study Michelle Witkop, DNP, FNP, BC,1 Angela Lambing, MSN, NP-C, 2 George Divine, PhD Biostats 2, Ellen Kachalsky, L-MSWC 2, Dave Rushlow, L-MSW, 1 Jane Dinnen, RN, 1 1 Northern Regional Bleeding Disorders Center, Traverse City, MI; 2 Henry Ford Health System, Detroit, MI; Statement of the Problem Limitations Method 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 Objectives “Pain is an inevitable complication of repeated joints bleeds resulting in end stage joint disease” 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%) 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 Conclusions 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/painstudywww.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 Discussion 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