Pain and Pain Management in
Thalassemia
Dru Haines, PNP
Children’s Hospital Research Center, Oakland
June 29, 2013
Pain Questions
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How common is pain?
How severe is pain?
How prolonged is pain?
What are the sites of pain?
What is the cause of pain?
How is pain managed?
Who participated in the study?
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252 patients with thalassemia.
Age ranged from 12-71
Transfused and non-transfused
-80 % transfused
-6% intermittently transfused
-15% non-transfused
How common is pain?
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64% of 252 participants reported
experiencing pain in the last four weeks.
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73% of participants 20 years old and
older reported pain in the last four
weeks.
How common is pain?
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26% of general US population of people
20 years old and greater reported pain
in the last four weeks.
How common is pain?
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Pain is more common in individuals with
thalassemia vs. the US general
population.
How common is pain?
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37% reported pain in the last seven
days.
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56% participants 35 years and older
reported pain in the last 7 days.
How common is pain?
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Pain significantly increases with age.
Percentage of subjects (and 95% exact confidence interval) reporting
pain by age (n=251)
100%
90%
Subjects reporting pain
80%
70%
60%
50%
40%
30%
20%
10%
0%
12-13
(n=17)
14-17
(n=33)
18-24
(n=56)
25-34
(n=61)
Age Group
35-44
(n=60)
45-71
(n=24)
How severe is the pain?
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81% rated their worst pain as moderate
(4 or greater).
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39% rated their worst pain as severe
(7 or greater).
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How prolonged is pain?
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81% reported pain for 1 year or more.
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31% reported pain for 5 years or more.
Pain Duration
More than 5
years
25%
3 or fewer
months
17%
5 years
9%
4 years
6%
4-6 months
4%
1 year
21%
3 years
6%
2 years
12%
What are the sites of pain?
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81% identified lower back.
47% identifed mid back.
39% identified upper back.
Pain Sites
Percentage of subjects (and 95% exact confidence interval) reporting
pain by site of pain (n=92)
100%
90%
81.5%
Subjects reporitng pain
80%
70%
60%
50%
40%
30%
55.4%
47.8%
47.8%
38.0%
38.0%
30.4%
20%
10%
0%
Location
27.2%
28.3%
What is the cause of pain?
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Participants reported the following
causes of pain:
-55% low hemoglobin
-40% bone pain
-30% muscle spasm
What is the cause of pain?
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Analyzed whether the following were
significantly different between
participants with and without pain:
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Hemoglobin level.
Bone Density severity, Fracture history.
Iron overload.
Chelation method.
What is the cause of pain?
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None of the factors were significantly
different.
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No clear pain cause identified.
How is pain managed?
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63% used pain medications
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Non steroidal anti-inflammatories-52%
Acetaminophen (Tylenol)-34%
Short-acting opiods-17%
Long-acting opiods-8%
How is pain managed?
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47% reported decreased pain with
blood transfusions.
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43% reported decreased pain with rest.
Summary of Findings
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Pain is common.
Pain frequency and severity increase
with age.
Pain is chronic.
Pain primary site is back.
Pain etiology-elusive.
Case Study I
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Ralph is a 49 year old male with Non
transfusion dependent Beta Thal.
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Chronic back pain for greater than 10
years.
Poor bone density, no history of fractures.
Hemoglobin averages 10-10.5
Case Study
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Evaluation: Initial assessment
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pain located- along full length of spine.
severity-7/10.
radiates- intermittently down legs.
numbness/tingling, loss of strength-not reported.
Case Study I
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Further evaluation:
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MRI- Full Spine
Orthopedic consult to assess for surgical
options
Case Study I
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Treatment Plan:
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Pain Medications:
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Non-steroidals, short-acting opiods, anti-anxiety
Acetaminophen
Case Study I
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Additional Therapies
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Initiation of transfusions recommended
Physical Therapy
Massage
Exercise
Case Study I
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Outcome
Pain is decreased, but not eliminated.
Case Study II
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25 year old female with non transfusion
dependent Beta Thal Intermedia
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3-4 years Mild to Moderate mid back pain.
Intermittent numbness in feet.
Loss of ability to control foot movement.
Hemoglobin averages 9.0.
Bone Density low normal.
Case Study II
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Evaluation:
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MRI of spine demonstrated two
hemapoetic masses pressing on spine.
Case Study II
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Treatment:
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Patient received radiation treatments to decrease
the mass size.
Patient started chronic transfusion therapy.
Outcome:
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All symptoms resolved.
Case Study III
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47 year old female with transfusion
dependent Beta thal.
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Lower back pain for 15 years.
Pain increases prior to transfusion.
History of vertebral fractures.
Poor bone density.
Scoliosis of mid back.
Case Study III
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Initial Assessment:
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Pain Severity-7-10/10.
Location-lower back.
No numbness or tingling.
Intermittent muscle spasms along spine.
Case Study III
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Diagostic Imaging:
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MRI of full Spine.
Further evaluation:
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Orthopedic consult.
Pain Specialist referral.
Case Study III
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Pain Plan: Medications:
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Short-acting opiods
Non-steroidal anti-inflammatories-
Pain Plan: Other Therapies
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Increased average hemoglobin level
Physical Therapy
Accupunture
Massage
Exercise
Steroid injections
Case Study III
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Outcome:
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Patient’s pain controlled, but not
eliminated.
What next?
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Further research:
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to clarify causes of pain,
to improve pain management.
Contributing Institutions
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Children’s Hospital & Research Center Oakland- PI-Dru Haines PNP, Olivia Oliveros
Vega, Elliott Vichinsky,MD
Children’s Hospital Los Angeles-Susan Carson NP, Thomas Coates, MD
Children’s Hospital Philadelphia- Marie Martin RN, Sage Green, Janet Kwiatkowski, MD
Children’s Hospital Boston- Jennifer Braunstein PNP, Ellis Neufeld, MD.
Children’s Memorial Hospital Chicago- Diane Calamaras, NP
Toronto General Hospital- Cecilia Kim BS, Nancy Oliveri, MD
Weill Medical College of Cornell-Dorothy Klienert NP, Patricia Giardina,MD
The Hospital for Sick Kids, Toronto- Manuela Merelles-Pulcini MSN
Children’s Healthcare of Atlanta- LeAnn Schilling MPH
Baylor College of Medicine- Bogdan Dinu,
Stanford University- Michael Jeng, MD
Children’s and Women’s Health Center, British Columbia- Jennifer Keis, RN
New England Research Institute- Felicia Trachtenberg PhD, Eric Gerstenberger MS
MD Anderson Cancer Center, Dept. of Symptom Research- Tito Mendoza PhD.