A National Assessment of Acute and Chronic Pain and Pain’s Effect on Quality of Life in the von Willebrand PatientMichelle 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;

Objectives

Limitations

•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.

Results

•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

•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

•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.

Conclusions

Region IRegion I

Region IIRegion II

Region II IRegion II I

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 VII IRegion VII I

Region XRegion X

Region IXRegion IX

Subjects Represented by Region

4

21

14

6

8

121

9

14

0

14

4

0

Demographics

6%Primary school- gr 8

20%Secondary school- gr 12

11%Technical school

63%College

Education level

4%Other

1%American Indian/Alaskan Native

2%African American

3%Hispanic

91%Caucasian

Ethnicity

Demographics

10%Student

18%Disabled

17%Retired

5%Employed part time

50%Employed full time

Work

2%Widowed

10%Divorced

22%Single

66%Married

Marital Status

V o n W ille b ra n d T yp e

6 1 %

2 7 %

0 %

1 0 %

2 0 %

3 0 %

4 0 %

5 0 %

6 0 %

7 0 %

T yp e I T yp e II T yp e II I

T yp e I

T yp e II

T yp e II I

Reported Pain by Severity

7.20 (SD 2.28)

N reported = 20

4.26 (SD 1.74)

N reported = 23

Type III

N Obs =26

4.60 (SD 2.11)

N reported =30

4.41 (SD 2.68)

N reported=39

Type II

N Obs = 59

5.84 (SD 2.76)

N reported=85

4.67 (SD 2.56)

N reported=93

Type I

N Obs=132

Mean

Acute Pain

(SD+/-)

Mean

Chronic Pain

(SD +/-)

Type of von Willebrand Disease

Discussion•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.

Quality of Life Scores (QOL)Variable Type I Type II Type III Stat Sig

Physical Functioning 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

Quality of Life Scores by von Willebrand Type

68%55%

59%58%

55%

51%

67%40%

37%

87%

44%

46%

0% 20% 40% 60% 80% 100%

Throbbing

Tiring

Tender

Sharp

Aching

Miserable

Chronic Pain

Acute Pain

Pain Descriptors

Oral Pain Medications Used

Non-Pharmacological TreatmentsNon-Pharmacological Treatments

Variable ScoreMental Health 63.28Physical Functioning 60.18Social Functioning 59.04Health Change 52.88Pain 52.02Emotional Problems 49.16Health Perception 48.66

Physical Problems 44.93Energy/Fatigue 41.18

Descriptive prospective study

IRB approval through Henry Ford Health System and not individual HTCs

Survey options included:

Web based questionnaire accessed by participants

Website: www.henryford/painstudy

Telephone interview scheduled by participants:

1-800 phone number

Interview available to be scheduled 24/7

Spanish services available upon request

Inclusion criteria

•18 years of age or older

•Bleeding disorder

•Hemophilia

•von Willebrand’s disease

•Understand, read and/or write English or Spanish

Marketing

NHF 2006 Kick Off- Philadelphia

NFH 2007 Florida- Booth Exhibit Hall

Flyers to home infusion companies

Consumer magazines advertisements and articles

Email blasts to hemophilia treatment centers

Methods

18%13%

50%38%

17%1%

30%23%

64%

60%

0% 20% 40% 60% 80%

Long actingopioids

Short actingopioids

Non opioids

NSAIDs

Acetaminophen

Chronic pain

Acute pain

70%71%

60%35%

73%67%

89%86%

50%19%

0% 20% 40% 60% 80% 100%

Elevation

Compression

Ice

Rest

Factor

Chronic PainAcute Pain

37%51%

38%45%

4%5%

30%39%

28%28%

22%23%

39%50%

20%14%

4%8%

11%13%

3%4%

6%0%

6%7%

0% 10% 20% 30% 40% 50% 60%

Heat

PT

Acupuncture

Relax

Prayer

Faith

Massage

TENS

Biofeedback

Chiropractic

ETOH

Illicit drugs

Herbal Chronic Pain

Acute Pain