Statement of the Problem

1. Quality of Life for Persistent Pain in Hemophilia PatientsAngela Lambing, MSN, NP-C,2 Michelle Witkop, DNP, FNP, BC,1 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 Results Quality of Life (QOL) Scores by Hemophilia Severity • “Pain in hemophilia is an inevitable complication of repeated joints bleeds. These bleeds result in end stage joint disease similar to end stage arthritis.” Persistent pain can affect quality of life in many populations. This study will evaluate quality of life in hemophilia patients with persistent pain. Objectives Alcohol/Illicit Drug use by Region (%) • The aim of this study seeks to: • Evaluate quality of life using a standardized Quality of Life tool (QOL); SF-36 • Compare QOL scores for persons with mild hemophilia, moderate hemophilia, severe hemophilia • Explore the use of alcohol & illicit drug use to manage persistent pain • 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 • Significant difference in QOL scores between mild & severe hemophilia for domains: physical function, social function, physical problem, emotional problem, pain, & health perception; with mild hemophilia reporting better QOL scores • Significant difference in QOL scores between moderate & severe hemophilia for domains: physical functioning & social functioning with moderate hemophilia reporting better QOL scores • Despite acute/chronic pain, persons with hemophilia reported positive QOL issues related to: physical functioning, social functioning, & mental health • Wide variability between regions with subjects perception of pain being treated well. • Regional differences exist as to how pts use alcohol and illicit drugs to manage their pain • Hemophilia pts are starting to explore additional non-pharmacologic txs to manage pain 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 Perception by patients who felt their pain was well treated vs 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 causing variation in data • This would have limited advancing questionnaire unless question answered providing more complete data • Subjects may not have been fully honest about their alcohol & illicit drug use despite anonymity of questionnaire Conclusions • Further studies are needed to: • Evaluate quality of life in persons with hemophilia to validate findings • Explore the use of alcohol and illicit drug use in this population for pain management • Understand what treatment modalities are utilized for pain management in regions where pts felt their pain was well treated. • Was there more alcohol/illicit drug use in regions where pts felt their pain was not well treated?