Transcript No Slide Title

A National Assessment of Acute and Chronic Pain and Pain’s Effect on Quality of Life in the von Willebrand Patient
Michelle Witkop, DNP, FNP, BC,1 Angela Lambing, MSN, NP-C,2 George Divine, PhD2, Ellen Kachalsky, L-MSWC2,
Dave Rushlow, L-MSWC,1 Jane Dinnen, RN, 1
1 Northern Regional Bleeding Disorders Center, Traverse City, MI; 2Henry Ford Health System, Detroit, MI;
Quality of Life Scores by von Willebrand Type
Quality of Life Scores (QOL)
Objectives
Results
•Determine the language used by persons with
von Willebrand Disease (vWD) in describing and
distinguishing their experiences of acute and
chronic pain.
•Describe the strategies utilized to control pain.
•Determine the perceived effectiveness of current
pain management therapies on quality of life
using a standardized Quality of Life tool
•Determine who currently provides pain
management to this population.
•Evaluate demographics of the population
studied.
Reported Pain by Severity
Subjects Represented by Region
9
0
Region X
14
Region I
Region V West
21
121
Region II
4
Region V East
Region VII
Region VIII
Region III
14
0
Region IV North
Region IX
Region IV South
4
Mean
Chronic Pain
(SD +/-)
Type of von
Willebrand
Disease
Type I
N Obs=132
Type II
N Obs = 59
Type III
N Obs =26
Mean
Acute Pain
(SD+/-)
Web based questionnaire accessed by
participants
Pain Descriptors
Von Willebrand Type
Telephone interview scheduled by participants:
Sharp
67%
Energy/Fatigue
41.18
58%
59%
Tiring
55%
Throbbing
68%
20%
40%
60%
80%
100%
60%
64%
Chronic pain
Acute pain
23%
30%
NSAIDs
1%
17%
10%
Inclusion criteria
Short acting
opioids
0%
Type I
•18 years of age or older
•von Willebrand’s disease
•Understand, read and/or write English or Spanish
Marketing
Ethnicity
91%
Hispanic
3%
African American
American Indian/Alaskan
Native
1%
Other
4%
Email blasts to hemophilia treatment centers
0%
College
63%
Technical school
11%
Secondary school- gr 12
20%
Primary school- gr 8
6%
20%
40%
Work
Chronic Pain
Acute Pain
19%
50%
86%
89%
67%
73%
35%
Compression
Employed full time
50%
Married
66%
Employed part time
5%
Single
22%
Retired
17%
Divorced
10%
Disabled
18%
Widowed
2%
Student
10%
56.4
73.7
48.7
*Type I vs TypeII
*Type II vs Type III
Social Functioning
53.3
76.7
48.1
*Type I vs TypeII
*Type II vs Type III
Physical Problems
37.7
64.8
36.5
*Type I vs TypeII
*Type II vs Type III
Emotional Problems
38.9
72.3
48.7
*Mild vs Severe
Mental Health
57.8
76.0
62.3
*Type I vs TypeII
*Type II vs Type III
Energy/Fatigue
35.7
55.7
36.2
*Type I vs TypeII
*Type II vs Type III
Pain
49.4
60.5
46.2
*Type I vs TypeII
*Type II vs Type III
Health Perception
44.5
62.5
38.6
*Type I vs TypeII
*Type II vs Type III
Health Change
53.0
54.7
48.1
80%
Limitations
Non-Pharmacological Treatments
Illicit drugs
0%
ETOH
13%
11%
8%
14%
TENS
Elevation
50%
39%
23%
22%
28%
28%
Relax
Acupuncture
0%
20%
40%
60%
80% 100%
39%
30%
5%
4%
PT
38%
45%
51%
Heat
0%
Conclusions
20%
Massage
Prayer
71%
70%
•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
4%
Faith
60%
Acute Pain
6%
4%
3%
Chiropractic
Biofeedback
Chronic Pain
7%
6%
Herbal
Ice
Marital Status
60%
Non-Pharmacological
Treatments
Factor
Demographics
NFH 2007 Florida- Booth Exhibit Hall
Consumer magazines advertisements and articles
13%
18%
Rest
NHF 2006 Kick Off- Philadelphia
Flyers to home infusion companies
2%
50%
Long acting
opioids
Education level
Caucasian
38%
Type III
Demographics
•Bleeding disorder
•Hemophilia
Type II
Physical Functioning
•Most respondents were female,Caucasian, married, well educated, work full time and had
Type I von Willebrand Disease.
•With reported overall mean acute pain levels of 5.76/10 and chronic daily pain levels of
4.54/10, 45% of patients reported their pain was not well treated.
•Although aching was the strongest word descriptor for chronic pain, respondents used
similar word descriptors for acute/chronic pain; suggesting an inability to tell the difference
•Patients see their primary care provider (47%) or their HTC/Hematologist (45%) for their
pain management while 12% were seen by a Pain Clinic.
•Acetaminophen was the most commonly used medication for acute and chronic pain in the
majority of regions despite reported acute pain levels of 5.76/10.
•NSAIDs continue to be used despite the bleeding risk in this population (30% acute/23%
chronic).
•Complementary and alternative methods (CAM) of pain management are not fully
explored or utilized in this population.
•A small percentage of patients are using illicit drugs and alcohol for pain relief nationally
with varied results by regions.
•Patients with Type I von Willebrand Disease have surprisingly low QOL scores, especially
in the domains of fatigue/energy, physical problems, and emotional problems.
55%
Non opioids
20%
Stat Sig
Discussion
Oral Pain Medications Used
Type I
Type II
Type III
27%
44.93
51%
Tender
50%
30%
Physical Problems
Chronic Pain
Acute Pain
40%
Acetaminophen
40%
Type III
48.66
37%
60%
Spanish services available upon request
49.16
Type II
87%
Aching
61%
Interview available to be scheduled 24/7
Emotional Problems
Type I
44%
70%
1-800 phone number
52.02
46%
0%
Website: www.henryford/painstudy
Pain
Health Perception
Region VI
•1,104 overall questionnaires received
•217 von Willebrand’s disease
•764 hemophilia A or B
•Convenience sample
•75% of vWD subjects were female (N=162)
•Average age of vWD subjects was 46 years
(range18-83)
•57% were married
Survey options included:
Health Change
63.28
60.18
59.04
52.88
Social Functioning
4.67 (SD 2.56) 5.84 (SD 2.76)
N reported=93 N reported=85
4.41 (SD 2.68) 4.60 (SD 2.11)
N reported=39 N reported =30
4.26 (SD 1.74) 7.20 (SD 2.28)
N reported = 23 N reported = 20
Miserable
IRB approval through Henry Ford Health System and not
individual HTCs
Mental Health
Physical Functioning
14
Descriptive prospective study
Score
6
8
Methods
Variable
Variable
37%
10%
20%
30%
40%
50%
60%
•Further studies are needed to:
•Examine differences in pain management between regions; severity of disease
•Quality of life issues , especially in Type I von Willebrand Disease.
•Multimodal pain approach and the use of complementary and alternative therapies.
•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.