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;

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, OhioDescriptive prospective studyPain Study entry available between: October 2006 – February 2009

Website: www.henryford/painstudyPaper questionnaire1-800 phone number

Available 24/7 for completion of study questionsSpanish services

Inclusion criteria> 18 years of ageBleeding disorder

Hemophiliavon Willebrand’s disease

Able to speak/read English or SpanishMarketing

NHF kick off: Philadelphia 2006NFH 2007 Florida; Booth exhibit hallFlyers to home infusion companiesConsumer magazines

Region IRegion I

Region IIRegion II

Region IIIRegion III

Region IV NorthRegion IV North

Region VIIRegion VII

Region IV SouthRegion IV South

Region VIRegion VI

Region V WestRegion V West

Region V EastRegion V East

Region VIIIRegion VIII

Region XRegion X

Region IXRegion IX

Subjects represented by Region

29

60

53

85

30

224

57

44

77

49

34

14

Demographics

7%Primary school: gr 8

20%Secondary school: gr 12

15%Technical school

58%College

Education level

1%American Indian

2%Middle Eastern

2%Asian

2%Hispanic

5%African American

86%Caucasian

Ethnicity

Demographics

6%Student

26%Disabled

15%Retired

7%Employed part time

46%Employed full time

Work

1%Widowed

10%Divorced

33%Single

56%Married

Marital Status

Hemophilia Severity

13%

4%10%

7%

56%

22%

11%

2%

0%

10%

20%

30%

40%

50%

60%

Mild Moderate Severe Inhibitor

Hemophilia A

Hemophilia B

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

Reported pain by severity

6.174.25Severe

5.684.43Moderate

5.093.88Mild

Average

Acute Pain

Average

Chronic PainSeverity of Hemophilia

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

Pain Descriptors

0% 20% 40% 60% 80% 100%

Throbbing

Nagging

Tiring

Tender

Sharp

Aching

Exhausting

Miserable

Chronic Pain

Acute Pain

Oral Pain Medications Utilized

0% 10% 20% 30% 40% 50% 60%

Long actingopioids

Short actingopioids

Non opioids

NSAIDs

Acetaminophen

Chronic pain

Acute pain

Non-Pharmacological Treatments

69%47%

65%58%

78%58%

81%84%

84%58%

0% 20% 40% 60% 80% 100%

Elevation

Compression

Ice

Rest

Factor

Chronic Pain

Acute Pain

Non-Pharmacological Treatments

0% 10% 20% 30% 40% 50%

Heat

PT

Acupuncture

Relax

Prayer

Faith

Massage

TENS

Biofeedback

Chiropractic

ETOH

Illicit drugs

Herbal Chronic Pain

Acute Pain