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V.  Special Population
     E.  Sickle Cell Disease

This section includes physician and patient resource guides in pain management in sickle cell disease as well as   clinical pathways for treatment.  Videos and guidelines for treatment are also available.

        Recommended Publications

  1. Darbarai, D. S., Ballas, S. K., & Clauw, D. J. (2014). Thinking beyond sickling to better understand pain in sickle cell disease. European Journal of Haematology, 93(2), 89-95.
    DOI: 10.1111/ejh.12340.
     

  2. Darbari, D. S., Neely, M., van den Anker, J., & Rana, S. (2011). Increased clearance of morphine in sickle cell disease: Implications for pain management. The Journal of Pain, 12(5), 531-538.
    DOI: 10.1016/j.jpain.2010.10.012.
     

  3. Fisher, L. (2011). Perioperative care of the patient with sickle cell disease. AORN Journal, 93(1), 150-159. 
    DOI: 10.1016/j.aorn.2010.08.019.
     

  4. Reagan, M. M., DeBaun, M. R., & Frei-Jones, M. (2011). Multi-modal intervention for the inpatientmanagement of sickle cell pain significantly decreases the rate of acute chest syndrome. Pediatric Blood Cancer, 56, 262-266.
    DOI: 10.1002/pbc.22808.
     

  5. Brandow, A. M., Weisman, S. J., & Panepinto, J. A. (2011). The impact of a multidisciplinary pain management model on sickle cell disease pain hospitalizations. Pediatric Blood Cancer, 56, 789-793. DOI: 10.1002/pbc.22874.
     

  6. Ameringer, S. & Smith, W. R. (2011). Emerging biobehavioral factors of fatigue in sickle cell disease. Journal of Nursing Scholarship, 43(1), 22-29. DOI: 10.1111/j.1547-5069.2010.01376.x.
     

  7. Hope and Destiny: A Patient's and Parent's Guide to Sickle Cell Anemia and Sickle Cell Trait, 3rd Edition
    -     Platt, Jr., A. F., Eckman, J., & Hsu, L. (2011). IN: Hilton Publishing.  ISBN: 9780984144709.
     

  8. Navaid, M. & Melvin, T. (2010). A palliative care approach in treating patients with sickle cell disease using exchange transfusion. American Journal of Hospice & Palliative Medicine, 27(3), 215-218. 
    DOI: 10.1177/1049909109356966.
     

  9. Wright, J. & Ahmedzai, S. H. (2010). The management of painful crisis in sickle cell disease. Current Opinion in Supportive and Palliative Care, 4, 97-106. DOI: 10.1097/SPC.0b013e328339429a.
     

  10. Ballas, S. K., Bauserman, R. L., McCarthy, W. F., Castro, O. L. Smith, W. R. & Waclawiw, M. A. (2010). Hydroxyurea and acute painful crises in sickle cell anemia: Effects on hospital length of stay and opioid utilization during hospitalization, outpatient acute care contacts, and at home. Journal of Pain and Symptom Management, 40(6), 870-882. 
    DOI: 10.1016/j.jpainsymman.2010.03.020.
     

  11. Edwards, L. Y. & Edwards, C. L. (2010). Psychosocial treatments in pain management of sickle cell disease. Journal of the National Medical Association, 102(11), 1084-1094.
     

  12. Wilkie, D. J., Johnson, B., Mack, A. K., Labotka, R., & Molokie, R. E. (2010). Sickle cell disease: An opportunity for palliative care across the life span. Nursing Clinics of North America, 45, 375-397. 
    DOI: 10.1016/j.cnur.2010.03.003.
     

  13. Hyacinth, H. I, Gee, B. E., & Hibbert, J. M. (2010). The role of nutrition in sickle cell disease. Nutrition and Metabolic Insights, 3, 56-67.
    DOI: 10.4137/NMI.S5048.   

  14. Zempsky, W. T., Loiselle, K. A., McKay, K., Lee. B. H., Hagstrom, J. N., & Schechter, N. L. (2010). Do children with sickle cell disease receive disparate care for pain in the emergency department?  The Journal of Emergency Medicine, 39(5),  691-695. 
    DOI: 10.1016/j.jemermed.2009.06.003. 

  15. Mousa, S. A.,Al Momen, A., Al Sayegh, F., Al Jaouni, S., Nasrullah, Z., Al Saeed, H., et al. (2010). Management of painful vaso-occlusive crisis of sickle-cell anemia: Consensus opinion. Clinical and Applied Thrombosis/Hemostasis, 16(4), 365-376. DOI: 10.1177/1076029609352661.

  16. Dampier, C., Lieff, S., LeBeau, P. Rhee, S., McMurray, M., Rogers, Z., et al. (2010). Health-related quality of life in children with sickle cell disease: A report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium. Pediatric Blood Cancer, 55, 485-494. DOI: 10.1002/pbc.22497. 

  17. Odesina, V., Bellini, S., Leger, R., Bona, R., Delaney, C., Andemariam, B., et al.  (2010). Evidence-based sickle cell pain management in the emergency department. Advanced Emergency Nursing Journal, 32(2), 102-111. 
    DOI: 10.1097/TME.0b013e3181da588c. 

  18. Solomon, L. R. (2010). Pain management in adults with sickle cell disease in a medical center emergency department. Journal of the National Medical Association, 102(1), 1025-1032.  

  19. Taylor, L. E. V., Stotts, N. A., Humphreys, J., Treadwell, M. J., & Miaskowski, C. (2010). A review of the literature on the multiple dimensions of chronic pain in adults with sickle cell disease. Journal of Pain and Symptom Management, 40(3), 416-435. 
    DOI: 10.1016/j.jpainsymman.2009.12.027.

  20. Wilkie, D. J., Molokie, R., Boyd-Seal, D., Suarez, M. L., Kim, Y. O., Zong, S., et al. (2010). Patient-reported outcomes: Descriptors of nociceptive and neuropathic pain and barriers to effective pain management in adult outpatients with sickle cell disease. Journal of the National Medical Association, 102(1), 18-27. 

  21. Sickle Cell Anemia: A Mother’s Perspective What Every Parent Should Know
    -     Lipscome, M & Chamberlin, M. (2010). CreateSpace. ISBN: 978-1456450670. 

  22. 21st Century Ultimate Medical Guide to Sickle Cell Anemia - Authoritative Clinical Information for Physicians and Patients (Two CD Set) 
    - US Government. (2009). FL: Progressive Management. ISBN: 978-1422023105.

  23. Miscola, P. Sorrentino, F., Scaramucci, L., de Fabritiis, P., Cianciulli, P. (2009). Pain syndromes in sickle cell disease: An update. Pain Medicine, 10(3), 470-480. DOI: 10.1111/j.1526-4637.2009.00601.x.

  24. Cotton, S., Grossoehme, D., Rosenthan, S. L., McGrady, M. E., Roberts, Y. H., Hines, J., et al. (2009). Religious/spiritual coping in adolescents with sickle cell disease: A pilot study. Journal of Pediatric Hematology Oncology, 31(5), 313-318.                       DOI: 10.1097/MPH.0b013e31819e40e3.

  25. Howard, J., Thomas, V. J., & Rawle, H. M. (2009). Pain management and quality of life in sickle cell disease. Expert Reviews Pharmacoeconomics Outcomes, Research, 9(4), 347-352. DOI: 10.1586/ERP.09.32. 

  26. McClellan, C. B., Schatz, J. C., Puffer, E., Sanchez, C. E., Stancil, M. T., & Roberts, C. W. (2009). Use of handheld wireless technology for a home-based sickle cell pain management protocol. Journal of Pediatric Psychology, 34(5), 564-573.             
    DOI: 10.1093/jpepsy/jsn121.

  27. O’Connell-Edwards, C. F., Edwards, C. L., Pearce, M., Wachholtz, A. B., Wood, M., Muhammad, M., et al. (2009). Religious coping and pain associated with sickle cell disease: Exploration of a non-linear model. Journal of African American Studies, 13, 1-13. DOI: 10.1007/s12111-008-9063-4.

  28. Field, J. J., Knight-Perry, J. E., & DeBaun, M. R. (2009). Acute pain in children and adults with sickle cell disease: Management in the absence of evidence-based guidelines. Current Opinion in Hematology, 16, 173-178. 
    DOI: 10.1097/MOH.0b013e328329e167.

  29. Mann-Jiles, V. & Morris, D. L. (2009). Quality of life of adult patients with sickle cell disease. Journal of the American Academy of Nurse Practitioners, 21, 349-349. DOI: 10.1111/j.1745-7599.2009.00416.x.

  30. Benjamin, L. (2008). Pain management in sickle cell disease: Palliative care begins at birth? Hematology/the Education Program of the American Society of Hematology, 466-474.

  31. Barakat, L. P., Patterson, C. A., Daniel, L. C., & Dampier, C. (2008). Quality of life among adolescents with sickle cell disease: Mediation of pain by internalizing symptoms and parenting distress. Health and Quality of Life Outcomes, 6, (60), 1-9.  

     

         Educational Materials/Curriculum

  1. The Sickle Cell Information Center - Georgia Comprehensive Sickle Cell Center, Atlanta, GA.          
     

        Guidelines/Clinical Pathways

  1. The Management of Sickle Cell Disease - National Institute of Health
     
  2. Sickle Cell Pain Relief Record - St. Francis Hospital & Medical Center, Hartford, CT.             
     

  3. Sickle Cell Disease: Critical Elements of Care -  The Center for Children with Special Health Needs Children’s Hospital and Regional Medical Center, Seattle, WA

    
       Other Organizational Links

          American Sickle Cell Anemia Association

          Sickle Cell Anemia  ~ MedLine Plus

          Sickle Cell Disease ~ EMedicineHealth

          Sickle Cell Disease: KidsHealth

          Sickle Cell Disease ~ March of Dimes

          Sickle Cell Disease - National Organization for Rare
        Disorders
          Sickle Cell Disease and Your Baby ~ March of Dimes

          Sickle Cell Disease Association of America, Inc. 

          SickleCellKids.org

          Sickle Cell Society

 

          

 

       Position Statements/Standards

  1. American Academy of Pediatrics Policy Statements 
    - Health Supervision for Children with Sickle Cell Disease
     Timely and appropriate treatment of SCD is critical, because life-threatening complications develop rapidly. It is essential that every child with SCD receive comprehensive care that is coordinated through a medical home with appropriate expertise.

 


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