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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