Quality of Life for Persistent Pain in Hemophilia Patients Angela Lambing, MSN, NP-C, 2 Michelle...
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![Page 1: Quality of Life for Persistent Pain in Hemophilia Patients Angela Lambing, MSN, NP-C, 2 Michelle Witkop, DNP, FNP, BC,1 George Divine, PhD Biostats 2,](https://reader036.fdocuments.us/reader036/viewer/2022082819/56649f265503460f94c3cb4c/html5/thumbnails/1.jpg)
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
Limitations
Method
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
Objectives
•“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.
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 causing variation in data
•This would have limited advancing questionnaire unless question answered providing more complete data
•Subjects may not have been fully honest about their alcohol & illicit drug use despite anonymity of questionnaire
• Further studies are needed to:a. Evaluate quality of life in persons with hemophilia to validate findingsb. Explore the use of alcohol and illicit drug use in this population for pain managementc. 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?
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/painstudy•Paper questionnaire•1-800 phone number
Available 24/7 for completion of study questionsSpanish services
Inclusion criteria•> 18 years of age•Bleeding disorder
•Hemophilia•von 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
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 by severity (0-10)
6.174.25Severe
5.684.43Moderate
5.093.88Mild
Average
Acute Pain
Average
Chronic PainSeverity of Hemophilia
Discussion
Alcohol/Illicit Drug use by Region (%)
•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
•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
•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
Quality of Life (QOL) Scores by Hemophilia Severity
21
23
32
3
10
14
20
28
7
265
27
0
0
17
16
10
27
4
0
00
13
0
0 10 20 30 40
X
IX
VIII
VII
VI
V-W
V-E
IV-S
IV-N
III
II
I
Illicit drug use
ETOH use
0
10
20
30
40
50
60
70
80
90
100
I II III IV-N IV-S V-E V-W VI VII VIII IX X
Well treatedNot well treated
Perception by patients who felt their pain was well treated vs not well treated (%)
Variable Overall Mild 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
![Page 2: Quality of Life for Persistent Pain in Hemophilia Patients Angela Lambing, MSN, NP-C, 2 Michelle Witkop, DNP, FNP, BC,1 George Divine, PhD Biostats 2,](https://reader036.fdocuments.us/reader036/viewer/2022082819/56649f265503460f94c3cb4c/html5/thumbnails/2.jpg)