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Quality of Life for Persistent Pain in Hemophilia Patients
Angela Lambing, MSN, NP-C,2 Michelle Witkop, DNP, FNP, BC,1 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
Quality of Life (QOL) Scores by Hemophilia Severity
Results
Variable
•“Pain in hemophilia is an inevitable complication of
repeated joints bleeds. These bleeds result in end
stage joint disease similar to end stage arthritis.”
Persistent pain can affect quality of life in many
populations. This study will evaluate quality of life
in hemophilia patients with persistent pain.
Subjects represented by Region
Reported pain by severity (0-10)
Region X
14
Region I
Region V West
49
60
224
Region II
Average
Chronic Pain
Average
Acute Pain
3.88
5.09
Moderate
4.43
5.68
Severe
4.25
6.17
Severity of
Hemophilia
Mild
57
29
Region V East
Region VII
Region VIII
Region III
53
77
Region IV North
Region IX
Region IV South
34
85
Region VI
Objectives
30
44
The aim of this study seeks to:
•Evaluate quality of life using a standardized
Quality of Life tool (QOL); SF-36
•Compare QOL scores for persons with mild
hemophilia, moderate hemophilia, severe
hemophilia
•Explore the use of alcohol & illicit drug use to
manage persistent pain
Alcohol/Illicit Drug use by Region (%)
I
•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%)
26
5
17
II
16
III
10
IV-N
4
V-E
Hemophilia Severity
Built upon regional pain study: Region VEast; 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
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
60%
V-W
56%
VII
50%
VIII
40%
IX
0
22%
20%
13%
10%
10%
4%
14
27
27
13
Moderate
Severe
Stat Sig *
Physical
Functioning
65.79
69.5
62.6
47.5
*Mild vs Severe
*Mod vs Severe
Social
Functioning
61.11
68.8
68.0
58.0
*Mild vs Severe
*Mod vs Severe
Physical
Problems
53.04
58.6
34.6
24.3
*Mild vs Severe
Emotional
Problems
50.83
64.3
56.4
46.8
*Mild vs Severe
Mental Health
49.43
66.1
64.6
66.0
Energy/Fatigue
49.05
45.4
46.9
43.2
Pain
48.39
62.5
51.8
44.7
*Mild vs Severe
Health Perception
44.06
62.0
50.4
46.5
*Mild vs Severe
Health Change
30.99
48.7
43.6
50.3
Discussion
•Significant difference in QOL scores between mild & severe hemophilia for domains:
physical function, social function, physical problem, emotional problem, pain, & health
perception; with mild hemophilia reporting better QOL scores
32
0
0
23
21
•Significant difference in QOL scores between moderate & severe hemophilia for domains:
physical functioning & social functioning with moderate hemophilia reporting better QOL
scores
•Despite acute/chronic pain, persons with hemophilia reported positive QOL issues related
to: physical functioning, social functioning, & mental health
7
0
11%
Mild
Illicit drug use
ETOH use
10
3
0
0
X 0
Hemophilia A
Hemophilia B
30%
20
IV-S
VI
Method
28
Overall
10
20
30
40
7%
•Wide variability between regions with subjects perception of pain being treated well.
•Regional differences exist as to how pts use alcohol and illicit drugs to manage their pain
•Hemophilia pts are starting to explore additional non-pharmacologic txs to manage pain
2%
0%
Mild
Moderate
Severe
Inhibitor
Perception by patients who felt their pain was well treated vs
not well treated (%)
Demographics
100
Ethnicity
Education level
Caucasian
86%
African American
5%
Hispanic
2%
Asian
2%
Middle Eastern
2%
American Indian
1%
Well treated
Not well treated
90
College
58%
Technical school
15%
Secondary school: gr 12
20%
Primary school: gr 8
7%
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 causing variation in data
•This would have limited advancing questionnaire unless question answered providing
more complete data
80
70
60
•Subjects may not have been fully honest about their alcohol & illicit drug use despite anonymity of
questionnaire
50
Conclusions
40
•
30
Work
Marital Status
Employed full time
46%
Married
56%
Employed part time
7%
Single
33%
Retired
15%
Divorced
10%
Disabled
26%
Widowed
1%
Student
6%
20
10
0
I
II
III
IV-N IV-S
V-E
V-W
VI
VII
VIII
IX
X
Further studies are needed to:
a. Evaluate quality of life in persons with hemophilia to validate findings
b. Explore the use of alcohol and illicit drug use in this population for pain management
c. Understand what treatment modalities are utilized for pain management in regions where
pts felt their pain was well treated.
d. Was there more alcohol/illicit drug use in regions where pts felt their pain was not well
treated?