Pain and Pain Management in Thalassemia

1. Pain and Pain Management in Thalassemia Dru Haines, PNP Children’s Hospital Research Center, Oakland June 29, 2013

2. Pain Questions • 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?

3. Who participated in the study? • 252 patients with thalassemia. • Age ranged from 12-71 • Transfused and non-transfused -80 % transfused -6% intermittently transfused -15% non-transfused

4. How common is pain? • 64% of 252 participants reported experiencing pain in the last four weeks. • 73% of participants 20 years old and older reported pain in the last four weeks.

5. How common is pain? • 26% of general US population of people 20 years old and greater reported pain in the last four weeks.

6. How common is pain? • Pain is more common in individuals with thalassemia vs. the US general population.

7. How common is pain? • 37% reported pain in the last seven days. • 56% participants 35 years and older reported pain in the last 7 days.

8. How common is pain? • Pain significantly increases with age.

10. How severe is the pain? • 81% rated their worst pain as moderate (4 or greater). • 39% rated their worst pain as severe • (7 or greater).

11. How prolonged is pain? • 81% reported pain for 1 year or more. • 31% reported pain for 5 years or more.

12. Pain Duration

13. What are the sites of pain? • 81% identified lower back. • 47% identifed mid back. • 39% identified upper back.

14. Pain Sites 81.5% 55.4% 47.8% 47.8% 38.0% 38.0% 30.4% 27.2% 28.3%

15. What is the cause of pain? • Participants reported the following causes of pain: -55% low hemoglobin -40% bone pain -30% muscle spasm

16. What is the cause of pain? • Analyzed whether the following were significantly different between participants with and without pain: • Hemoglobin level. • Bone Density severity, Fracture history. • Iron overload. • Chelation method.

17. What is the cause of pain? • None of the factors were significantly different. • No clear pain cause identified.

18. How is pain managed? • 63% used pain medications- • Non steroidal anti-inflammatories-52% • Acetaminophen (Tylenol)-34% • Short-acting opiods-17% • Long-acting opiods-8%

19. How is pain managed? • 47% reported decreased pain with blood transfusions. • 43% reported decreased pain with rest.

20. Summary of Findings • Pain is common. • Pain frequency and severity increase with age. • Pain is chronic. • Pain primary site is back. • Pain etiology-elusive.

21. Case Study I • Ralph is a 49 year old male with Non transfusion dependent Beta Thal. • Chronic back pain for greater than 10 years. • Poor bone density, no history of fractures. • Hemoglobin averages 10-10.5

22. Case Study • Evaluation: Initial assessment • pain located- along full length of spine. • severity-7/10. • radiates- intermittently down legs. • numbness/tingling, loss of strength-not reported.

23. Case Study I • Further evaluation: • MRI- Full Spine • Orthopedic consult to assess for surgical options

24. Case Study I • Treatment Plan: • Pain Medications: • Non-steroidals, short-acting opiods, anti-anxiety • Acetaminophen

25. Case Study I • Additional Therapies • Initiation of transfusions recommended • Physical Therapy • Massage • Exercise

26. Case Study I • Outcome- • Pain is decreased, but not eliminated.

27. Case Study II • 25 year old female with non transfusion dependent Beta Thal Intermedia • 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.

28. Case Study II • Evaluation: • MRI of spine demonstrated two hemapoetic masses pressing on spine.

29. Case Study II • Treatment: • Patient received radiation treatments to decrease the mass size. • Patient started chronic transfusion therapy. • Outcome: • All symptoms resolved.

30. Case Study III • 47 year old female with transfusion dependent Beta thal. • Lower back pain for 15 years. • Pain increases prior to transfusion. • History of vertebral fractures. • Poor bone density. • Scoliosis of mid back.

31. Case Study III • Initial Assessment: • Pain Severity-7-10/10. • Location-lower back. • No numbness or tingling. • Intermittent muscle spasms along spine.

32. Case Study III • Diagostic Imaging: • MRI of full Spine. • Further evaluation: • Orthopedic consult. • Pain Specialist referral.

33. Case Study III • Pain Plan: Medications: • Short-acting opiods • Non-steroidal anti-inflammatories- • Pain Plan: Other Therapies • Increased average hemoglobin level • Physical Therapy • Accupunture • Massage • Exercise • Steroid injections

34. Case Study III • Outcome: • Patient’s pain controlled, but not eliminated.

35. What next? • Further research: • to clarify causes of pain, • to improve pain management.

36. Contributing Institutions • 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.