National Pain StudyNational Pain StudyMichelle Witkop, DNP,FNP-BC Michelle Witkop, DNP,FNP-BC 22

Angela Lambing, MSN, NP-CAngela Lambing, MSN, NP-C11

George Divine, PhD BiostatisticsGeorge Divine, PhD Biostatistics11

Ellen Kachalsky, L-MSWCEllen Kachalsky, L-MSWC11

Dave Rushlow, L-MSWDave Rushlow, L-MSW22

Jane Dinnen, RNJane Dinnen, RN22

11 Henry Ford Health System, Detroit, MI Henry Ford Health System, Detroit, MI22 Northern Region Bleeding Disorders, Traverse Northern Region Bleeding Disorders, Traverse

City, MICity, MI

Sponsored by: Wyeth, Hemophilia Health Services

““Pain is an inevitable Pain is an inevitable complication of complication of

repeated joints bleeds repeated joints bleeds resulting in end stage resulting in end stage

joint disease”joint disease”

Study ObjectivesStudy Objectives Evaluate demographics of the population studiedEvaluate demographics of the population studied Determine the language used by bleeding disorder Determine the language used by bleeding disorder

patients in describing and distinguishing their patients in describing and distinguishing their experience of acute bleeding pain and chronic painexperience of acute bleeding pain and chronic pain

Describe the strategies utilized to control painDescribe the strategies utilized to control pain Determine who currently provides pain Determine who currently provides pain

managementmanagement Determine the perceived effectiveness of current Determine the perceived effectiveness of current

pain management therapies on quality of life using pain management therapies on quality of life using a standardized Quality of Life tool; SF-36a standardized Quality of Life tool; SF-36

Identify pain management strategies utilized by Identify pain management strategies utilized by bleeding disorders communitybleeding disorders community

MethodMethod

Built upon regional pain study: Region V-Built upon regional pain study: Region V-East; Michigan, Indiana, OhioEast; Michigan, Indiana, Ohio

Descriptive prospective studyDescriptive prospective study Pain Study entry available between: Pain Study entry available between:

October 2006 – February 2009October 2006 – February 2009– Website: Website: www.henryford/painstudywww.henryford/painstudy– Paper questionnairePaper questionnaire– 1-800 phone number1-800 phone number

Available 24/7 for completion of study questionsAvailable 24/7 for completion of study questions Spanish servicesSpanish services

Method: cont’dMethod: cont’d Inclusion criteriaInclusion criteria

– > 18 years of age> 18 years of age– Bleeding disorderBleeding disorder

HemophiliaHemophilia von Willebrand’s von Willebrand’s

diseasedisease– Able to speak/read Able to speak/read

English or SpanishEnglish or Spanish MarketingMarketing

– NHF kick off: NHF kick off: Philadelphia 2006Philadelphia 2006

– NFH 2007 Florida; Booth NFH 2007 Florida; Booth exhibit hallexhibit hall

– Flyers to home infusion Flyers to home infusion companiescompanies

– Consumer magazinesConsumer magazines

ResultsResults

1,104 questionnaires received1,104 questionnaires received– 123 excluded due to incomplete data123 excluded due to incomplete data– 217 von Willebrand’s disease217 von Willebrand’s disease– 764 hemophilia A or B764 hemophilia A or B

Convenience sampleConvenience sample

42.15-years (range18-84-years)42.15-years (range18-84-years) Male(97%)Male(97%)

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

DemographicsDemographics

Education levelEducation level

CollegeCollege 58%58%

Technical schoolTechnical school 15%15%

Secondary school: gr Secondary school: gr 1212

20%20%

Primary school: gr 8Primary school: gr 8 7%7%

EthnicityEthnicityCaucasianCaucasian 86%86%

African AmericanAfrican American 5%5%

HispanicHispanic 2%2%

Asian Asian 2%2%

Middle EasternMiddle Eastern 2%2%

American IndianAmerican Indian 1%1%

DemographicsDemographics

WorkWorkEmployed full timeEmployed full time 46%46%

Employed part Employed part timetime

7%7%

RetiredRetired 15%15%

DisabledDisabled 26%26%

StudentStudent 6%6%

Marital StatusMarital Status

MarriedMarried 56%56%

SingleSingle 33%33%

DivorcedDivorced 10%10%

WidowedWidowed 1%1%

Hemophilia SeverityHemophilia 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 LevelsReported Pain Levels

Average daily acute pain levelAverage daily acute pain level– Pain reported as a result of a joint bleedPain reported as a result of a joint bleed– 5.97/10 (SD +/- 2.14)5.97/10 (SD +/- 2.14)

Average daily chronic pain levelAverage daily chronic pain level– Pain reported as a result of end stage Pain reported as a result of end stage

joint diseasejoint disease– 4.22/10 (SD +/- 2.05)4.22/10 (SD +/- 2.05)

39% of respondents felt their pain 39% of respondents felt their pain was NOT well treatedwas NOT well treated

Reported pain by severityReported pain by severity

Severity of Severity of HemophiliaHemophilia

Average Average

Chronic PainChronic PainAverage Average

Acute PainAcute Pain

MildMild 3.883.88 5.095.09

ModerateModerate 4.434.43 5.685.68

SevereSevere 4.254.25 6.176.17

Pain DescriptorsPain Descriptors

72%41%

38%38%

35%43%

52%42%

56%43%

69%87%

36%36%

46%32%

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

Throbbing

Nagging

Tiring

Tender

Sharp

Aching

Exhausting

Miserable

Chronic Pain

Acute Pain

Oral Pain Medications Oral Pain Medications UtilizedUtilized

21%24%

55%48%

7%1%

36%36%

53%

46%

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

Long actingopioids

Short actingopioids

Non opioids

NSAIDs

Acetaminophen

Chronic pain

Acute pain

Non-Pharmacological TreatmentsNon-Pharmacological Treatments

69%47%

65%58%

78%58%

81%84%

84%58%

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

Elevation

Compression

Ice

Rest

Factor

Chronic Pain

Acute Pain

Non-Pharmacological TreatmentsNon-Pharmacological Treatments

29%33%

25%30%

6%4%

41%36%

28%29%

21%22%

27%34%

9%10%

7%5%

6%10%

13%15%

8%8%

5%9%

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

Heat

PT

Acupuncture

Relax

Prayer

Faith

Massage

TENS

Biofeedback

Chiropractic

ETOH

Illicit drugs

Herbal Chronic Pain

Acute Pain

Providers Utilized for Pain Providers Utilized for Pain ManagementManagement

58%

7% 3%

32%

Hematology

Primary Care

Pain clinic

Other

Quality of Life Scores – HemophiliaQuality of Life Scores – Hemophilia

VariableVariable ScoreScoreMental HealthMental Health 65.7965.79

Social FunctioningSocial Functioning 61.1161.11

Physical Physical FunctioningFunctioning

53.0453.04

Emotional Emotional Problems Problems

50.8350.83

Health PerceptionHealth Perception 49.4349.43

Health ChangeHealth Change 49.0549.05

PainPain 48.3948.39

Energy/FatigueEnergy/Fatigue 44.0644.06

Physical ProblemsPhysical Problems 30.9930.99

QOL Scores by SeverityQOL Scores by Severity

VariableVariable Mild Mild ModerateModerate SevereSevere Stat SigStat Sig

Physical Physical FunctioningFunctioning

69.569.5 62.662.6 47.547.5 *Mild vs Severe*Mild vs Severe

*Mod vs Severe*Mod vs Severe

Social FunctioningSocial Functioning 68.868.8 68.068.0 58.058.0 *Mild vs Severe*Mild vs Severe

*Mod vs Severe*Mod vs Severe

Physical ProblemsPhysical Problems 58.658.6 34.634.6 24.324.3 *Mild vs Severe*Mild vs Severe

Emotional Emotional Problems Problems

64.364.3 56.456.4 46.846.8 *Mild vs Severe*Mild vs Severe

Mental HealthMental Health 66.166.1 64.664.6 66.066.0

Energy/FatigueEnergy/Fatigue 45.445.4 46.946.9 43.243.2

PainPain 62.562.5 51.851.8 44.744.7 *Mild vs Severe*Mild vs Severe

Health PerceptionHealth Perception 62.062.0 50.450.4 46.546.5 *Mild vs Severe*Mild vs Severe

Health ChangeHealth Change 48.748.7 43.643.6 50.350.3

*P < 0.001

Study LimitationsStudy Limitations

Convenience sampleConvenience sample Not all regions adequately Not all regions adequately

representedrepresented Not accounted for languages other Not accounted for languages other

than English or Spanishthan English or Spanish Computerized website access did not Computerized website access did not

have drop down choiceshave drop down choices– Limit advancing questionnaire unless Limit advancing questionnaire unless

question answeredquestion answered

DiscussionDiscussion Most respondents were Caucasian, married, well Most respondents were Caucasian, married, well

educated, work full time, & have severe educated, work full time, & have severe hemophiliahemophilia

Despite a reported average chronic daily pain Despite a reported average chronic daily pain level of 4.22/10, 39% respondents felt their pain level of 4.22/10, 39% respondents felt their pain was not well controlledwas not well controlled

Patients have difficulty distinguishing acute vs Patients have difficulty distinguishing acute vs chronic pain as they use similar descriptors to chronic pain as they use similar descriptors to describe their paindescribe their pain– Use of factor for chronic pain (58%)Use of factor for chronic pain (58%)– Use of factor for acute pain (84%)Use of factor for acute pain (84%)

Patients see their HTC/Hematologist (58%) or a Patients see their HTC/Hematologist (58%) or a pain clinic (32%) for pain managmentpain clinic (32%) for pain managment

DiscussionDiscussion Acetaminophen is still the most commonly used medication Acetaminophen is still the most commonly used medication

in acute pain situations in the majority of regions despite; in acute pain situations in the majority of regions despite; – Continued report of acute pain levels of 4.22/10Continued report of acute pain levels of 4.22/10– High incidence of hepatitis C in the bleeding disorder High incidence of hepatitis C in the bleeding disorder

populationpopulation NSAIDs continue to be used despite the bleeding risk in this NSAIDs continue to be used despite the bleeding risk in this

population.population. Only 85% of patients are using factor to treat acute pain Only 85% of patients are using factor to treat acute pain

associated with a bleedassociated with a bleed The RICE message is not optimally utilized.The RICE message is not optimally utilized. Physical therapy remains under-utilized for the Physical therapy remains under-utilized for the

management of acute (27%) and persistent pain (32%)management of acute (27%) and persistent pain (32%) Patients are using illicit drugs and alcohol for pain control; Patients are using illicit drugs and alcohol for pain control;

(0-30%)(0-30%) Despite acute/chronic pain, persons with hemophilia still Despite acute/chronic pain, persons with hemophilia still

have positive QOL issues related to: have positive QOL issues related to: – physical functioning, physical functioning, – social functioning, social functioning, – mental health.mental health.

ConclusionsConclusions Further studiesFurther studies

– Examine differences in pain management Examine differences in pain management between regions; severity of diseasebetween regions; severity of disease

Better education is needed for all persons Better education is needed for all persons involved in the bleeding disorders involved in the bleeding disorders community regarding pain managementcommunity regarding pain management– Use of long acting opioids in hemophiliaUse of long acting opioids in hemophilia– Multimodal pain approachMultimodal pain approach

The bleeding disorders community needs The bleeding disorders community needs to work towards evidenced based pain to work towards evidenced based pain management strategies for persons with management strategies for persons with bleeding disordersbleeding disorders