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
Jane Dinnen, RN 2
1 Henry Ford Health System, Detroit, MI
Northern Region Bleeding Disorders, Traverse City, MI
Sponsored by: Wyeth, Hemophilia Health Services

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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

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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

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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

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1,104 questionnaires received
– 123 excluded due to incomplete data
– 217 von Willebrand’s disease
– 764 hemophilia A or B
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Convenience sample
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42.15-years (range18-84-years)
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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
2%
2%
1%
86%
5%
2%
Education level
College 58%
Technical school 15%
Secondary school: gr 12 20%
Primary school: gr 8 7%

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

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

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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

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

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

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

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%
30%
25%
29%
30%
33%
40%
Chronic Pain
Acute Pain
22%
21%
27%
29%
28%
34%
36%
41%
50%

32%
Hematology
7%
3%
Primary Care
Pain clinic
Other
58%

Quality of Life Scores – Hemophilia
Variable
Mental Health
Social Functioning
Score
65.79
61.11
Physical Functioning 53.04
Emotional Problems 50.83
Health Perception
Health Change
Pain
49.43
49.05
48.39
Energy/Fatigue
Physical Problems
44.06
30.99

Social Functioning
Physical Problems
Variable
Physical Functioning
Mild
69.5
68.8
58.6
Moderate Severe
62.6
47.5
68.0
34.6
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

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Convenience sample
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Not all regions adequately represented
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Not accounted for languages other than
English or Spanish
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Computerized website access did not have drop down choices
– Limit advancing questionnaire unless question answered

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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

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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.

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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