Statement of the Problem

1. 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; Results Statement of the Problem • “Pain is an inevitable complication of repeated joints bleeds resulting in end stage joint disease” Objectives • 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%) 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 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 • 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 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 Conclusions • 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