A National Assessment of Acute and Chronic Pain and Pain’s Effect on Quality of Life in the von Willebrand Patient Michelle Witkop, DNP, FNP, BC,1 Angela Lambing, MSN, NP-C, 2 George Divine, PhD 2, Ellen Kachalsky, L-MSWC 2, Dave Rushlow, L-MSWC, 1 Jane Dinnen, RN, 1 1 Northern Regional Bleeding Disorders Center, Traverse City, MI; 2 Henry Ford Health System, Detroit, MI; Objectives Limitations Determine the language used by persons with von Willebrand Disease (vWD) in describing and distinguishing their experiences of acute and chronic pain. Describe the strategies utilized to control pain. Determine the perceived effectiveness of current pain management therapies on quality of life using a standardized Quality of Life tool Determine who currently provides pain management to this population. Evaluate demographics of the population studied. Results 1,104 overall questionnaires received 217 von Willebrand’s disease 764 hemophilia A or B Convenience sample 75% of vWD subjects were female (N=162) Average age of vWD subjects was 46 years (range18-83) 57% were married 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 Quality of life issues, especially in Type I von Willebrand Disease. Multimodal pain approach and the use of complementary and alternative therapies. 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 Discussion Most respondents were female,Caucasian, married, well educated, work full time and had Type I von Willebrand Disease. With reported overall mean acute pain levels of 5.76/10 and chronic daily pain levels of 4.54/10, 45% of patients reported their pain was not well treated. Although aching was the strongest word descriptor for chronic pain, respondents used similar word descriptors for acute/chronic pain; suggesting an inability to tell the difference Patients see their primary care provider (47%) or their HTC/Hematologist (45%) for their pain management while 12% were seen by a Pain Clinic. Acetaminophen was the most commonly used medication for acute and chronic pain in the majority of regions despite reported acute pain levels of 5.76/10. NSAIDs continue to be used despite the bleeding risk in this population (30% acute/23% chronic). Complementary and alternative methods (CAM) of pain management are not fully explored or utilized in this population. A small percentage of patients are using illicit drugs and alcohol for pain relief nationally with varied results by regions. Patients with Type I von Willebrand Disease have surprisingly low QOL scores, especially in the domains of fatigue/energy, physical problems, and emotional problems. Quality of Life Scores (QOL) VariableType IType IIType IIIStat Sig Physical Functioning *Type I vs TypeII *Type II vs Type III Social Functioning *Type I vs TypeII *Type II vs Type III Physical Problems *Type I vs TypeII *Type II vs Type III Emotional Problems *Mild vs Severe Mental Health *Type I vs TypeII *Type II vs Type III Energy/Fatigue *Type I vs TypeII *Type II vs Type III Pain *Type I vs TypeII *Type II vs Type III Health Perception *Type I vs TypeII *Type II vs Type III Health Change Quality of Life Scores by von Willebrand Type Pain Descriptors Oral Pain Medications Used Non-Pharmacological Treatments Variable Score Mental Health Physical Functioning Social Functioning Health Change Pain Emotional Problems Health Perception Physical Problems Energy/Fatigue Descriptive prospective study IRB approval through Henry Ford Health System and not individual HTCs Survey options included: Web based questionnaire accessed by participants Website: Telephone interview scheduled by participants: phone number Interview available to be scheduled 24/7 Spanish services available upon request Inclusion criteria 18 years of age or older Bleeding disorder Hemophilia von Willebrand’s disease Understand, read and/or write English or Spanish Marketing NHF 2006 Kick Off- Philadelphia NFH 2007 Florida- Booth Exhibit Hall Flyers to home infusion companies Consumer magazines advertisements and articles blasts to hemophilia treatment centers Methods