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