National Pain Study

2 Michelle Witkop, DNP,FNP-BC 2 Angela Lambing, MSN, NP-C 1 George Divine, PhD Biostatistics 1 Ellen Kachalsky, L-MSWC 1 Dave Rushlow, L-MSW 2 1 Jane Dinnen, RN 2 Henry Ford Health System, Detroit, MI Northern Region Bleeding Disorders, Traverse City, MI

Sponsored by: Wyeth, Hemophilia Health Services

“Pain is an inevitable complication of repeated joints bleeds resulting in end stage joint disease”

Study Objectives

      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 utilized by bleeding disorders community

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

Method: cont’d

  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

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%)

Subjects represented by Region

Region X

14

Region IX

34 49

Region VIII

57

Region V West

224 60

Region II Region V East Region VII

77

Region III

53

Region IV North Region IV South

85

Region VI

30 44

Region I

29

Ethnicity Caucasian African American Hispanic Asian Middle Eastern American Indian

Demographics

86% 5% 2% 2% 2% 1% Education level College Technical school Secondary school: gr 12 Primary school: gr 8 58% 15% 20% 7%

Demographics

Work Employed full time Employed part time Retired Disabled Student 46% 7% 15% 26% 6% Marital Status Married Single Divorced Widowed 56% 33% 10% 1%

Hemophilia Severity

60% 56% 50% 40% 30% 22% 20% 10% 13% 4% 0% Mild 10% 7% Moderate Severe 11% 2% 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

Severity of Hemophilia Mild Average Chronic Pain 3.88

Average Acute Pain 5.09

Moderate 4.43

5.68

Severe 4.25

6.17

Miserable Exhausting Aching Sharp Tender Tiring Nagging Throbbing 0%

Pain Descriptors

20% 32% 46% 36% 36% 69% 43% 56% 42% 52% 43% 35% 38% 38% 41% 40% 60% 72% 80% 87% 100% Chronic Pain Acute Pain

Oral Pain Medications Utilized

Acetaminophen 46% 53% Chronic pain Acute pain NSAIDs 36% 36% Non opioids 1% 7% Short acting opioids Long acting opioids 0% 10% 20% 24% 21% 30% 48% 55% 40% 50% 60%

Non-Pharmacological Treatments

Factor Rest Ice Compression Elevation 0% 20% 58% 84% 84% 81% 58% 78% 58% 65% 40% 47% 60% 69% 80% 100% Chronic Pain Acute Pain

Non-Pharmacological Treatments

Herbal Illicit drugs ETOH Chiropractic Biofeedback TENS Massage Faith Prayer Relax Acupuncture PT Heat 0% 4% 6% 9% 5% 8% 8% 10% 6% 5% 7% 10% 9% 15% 13% 10% 20% 22% 21% 27% 29% 28% 34% 36% 41% 30% 25% 29% 30% 33% 40% Chronic Pain Acute Pain 50%

32%

Providers Utilized for Pain Management

Hematology 7% 3% Primary Care Pain clinic Other 58%

Quality of Life Scores – Hemophilia Variable Mental Health Social Functioning Physical Functioning Emotional Problems Health Perception Health Change Pain Energy/Fatigue Physical Problems Score 65.79

61.11

53.04

50.83

49.43

49.05

48.39

44.06

30.99

Variable Physical Functioning Social Functioning Physical Problems

QOL Scores by Severity

Mild 69.5

68.8

58.6

Moderate 62.6

68.0

34.6

Severe 47.5

58.0

24.3

*P < 0.001

Stat Sig *Mild vs Severe *Mod vs Severe *Mild vs Severe *Mod vs Severe *Mild vs Severe Emotional Problems Mental Health Energy/Fatigue Pain 64.3

66.1

45.4

62.5

56.4

64.6

46.9

51.8

46.8

66.0

43.2

44.7

*Mild vs Severe *Mild vs Severe Health Perception Health Change 62.0

48.7

50.4

43.6

46.5

50.3

*Mild vs Severe

Study 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

Discussion

    Most respondents were Caucasian, married, well educated, work full time, & have severe hemophilia Despite a reported average chronic daily pain level of 4.22/10, 39% respondents felt their pain was not well controlled Patients have difficulty distinguishing acute vs chronic pain as they use similar descriptors to describe their pain – Use of factor for chronic pain (58%) – Use of factor for acute pain (84%) Patients see their HTC/Hematologist (58%) or a pain clinic (32%) for pain managment

      

Discussion

Acetaminophen is still the most commonly used medication in acute pain situations in the majority of regions despite; – Continued report of acute pain levels of 4.22/10 – High incidence of hepatitis C in the bleeding disorder population NSAIDs continue to be used despite the bleeding risk in this population.

Only 85% of patients are using factor to treat acute pain associated with a bleed 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 and alcohol for pain control; (0-30%) Despite acute/chronic pain, persons with hemophilia still have positive QOL issues related to: – physical functioning, – social functioning, – mental health.

Conclusions

   Further studies – Examine differences in pain management between regions; severity of disease Better education is needed for all persons involved in the bleeding disorders community regarding pain management – Use of long acting opioids in hemophilia – Multimodal pain approach The bleeding disorders community needs to work towards evidenced based pain management strategies for persons with bleeding disorders