Objectives

1. A National Assessment of Acute and Chronic Pain and Pain’s Effect on Quality of Life in the von Willebrand PatientMichelle Witkop, DNP, FNP, BC,1 Angela Lambing, MSN, NP-C,2 George Divine, PhD2, Ellen Kachalsky, L-MSWC2, Dave Rushlow, L-MSWC,1 Jane Dinnen, RN, 1 1 Northern Regional Bleeding Disorders Center, Traverse City, MI; 2Henry Ford Health System, Detroit, MI; Quality of Life Scores by von Willebrand Type Quality of Life Scores (QOL) Objectives Results • 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. Pain Descriptors Methods • 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 Discussion • Descriptive prospective study • IRB approval through Henry Ford Health System and not individual HTCs • Survey options included: • Web based questionnaire accessed by participants • Website: www.henryford/painstudy • Telephone interview scheduled by participants: • 1-800 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 • Email blasts to hemophilia treatment centers • 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. Oral Pain Medications Used Limitations Non-Pharmacological Treatments Non-Pharmacological Treatments • 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 • 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.