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Toluwalase Ajayi MD
Objective


Palliative care can be of help to patients
with sickle cell and cystic fibrosis.



By continuing to build a...
Palliative Care Services




Improve quality of
life
Multidisciplinary
team
Support services to
families
Palliative Care Services






Experts at eliciting
patient & family
goals of care
Initiating advance
care planning
Exp...
Cystic Fibrosis
Cystic Fibrosis






Most common multiorgan genetic
disease in the
Caucasian
population
Devastating chronic
lung dise...
Cystic Fibrosis





Prevalent
symptoms: dyspnea,
fatigue, anorexia,
anxiety, pain and
cough
Little to no palliative
ca...
Cystic Fibrosis






Patients who receive
palliative care derive
clear benefit
Rapid alleviation of
symptoms
Aggressiv...
Cystic Fibrosis




Transplants and
HRQL
Long-term survival
Life after transplant

Oreans JB et al 2009
Cystic Fibrosis




Deprived
opportunities
Best practices
Increased
opportunities for all
patients
Sickle Cell Disease
Sickle Cell Disease






Common life-limiting
genetic disease
Increased life span
Frequent
hospitalizations, soci
al ...
Sickle Cell Disease






Unpredictable
episodes of pain
Begins in early
childhood
Rigorous and time
consuming
treatme...
Sickle Cell Disease






Psychosocial
Symptoms
Early life events
Current stressful life
events
Increased risk

Giusep...
Sickle Cell Disease



Repeated ER visits
Prolonged
hospitalization stays

Myvik et al 2013
Sickle Cell Disease







Adversarial
relationship between
pt and medical team
Under treatment of
pain
Mistrust/
Marg...
Big Problems/Big Solutions
Possible Solutions






Overarching themes
Expanding the
medical view
Decreased ED
utilization
Attention to
psychosoc...
Possible Solutions






Core ideals
Patient and family
focused
Utilizing many
disciplines
Meeting them where
they are...
Possible Solutions





Shorten
hospitalization
Goals of care
Complex symptoms
Improved care
Possible Solutions



Strengthen inpatient
presence
Build trust
Barriers to Solutions




Great benefit
Limited resources
Importance of full staff
Conclusion
Work Cited










Tuchman, LK, Schwartz, LA et al. Cystic fibrosis and transition to adult medical care.
Pediatr...
Work Cited














Mehran Karimi, Sezaneh Haghpanah, Alit T. Taher, Maria Domenica Cappellini. "Beta Thalas...
Work Cited












Giuseppina Messina, Elisa Colombo, Elena Cassinerio, Francesca
Ferri, Rita Curti et al. "Psyc...
Work Cited
Orens JB, Garrity ER. General overview of lung
transplantation and review of organ allocation. Proc Am
Thorac S...
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Outpatient palliative Care for patients with Cystic Fibrosis and Sickle Cell

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Outpatient palliative Care for patients with Cystic Fibrosis and Sickle Cell

  1. 1. Toluwalase Ajayi MD
  2. 2. Objective  Palliative care can be of help to patients with sickle cell and cystic fibrosis.  By continuing to build a strong inpatient team and increase resources we can extend our services to a full outpatient service.
  3. 3. Palliative Care Services    Improve quality of life Multidisciplinary team Support services to families
  4. 4. Palliative Care Services    Experts at eliciting patient & family goals of care Initiating advance care planning Experts at symptom management
  5. 5. Cystic Fibrosis
  6. 6. Cystic Fibrosis     Most common multiorgan genetic disease in the Caucasian population Devastating chronic lung disease Medical advances Low quality of life Tuchman et al. 2010
  7. 7. Cystic Fibrosis    Prevalent symptoms: dyspnea, fatigue, anorexia, anxiety, pain and cough Little to no palliative care till end stage Palliative care needs to be instituted early Dellon EP al. 2010 Urquhart DS et al. 2013
  8. 8. Cystic Fibrosis    Patients who receive palliative care derive clear benefit Rapid alleviation of symptoms Aggressive use medications Robinson W. 2000 Yankaskas JR et al. 2004 Stenekes SJ et al. 2009
  9. 9. Cystic Fibrosis    Transplants and HRQL Long-term survival Life after transplant Oreans JB et al 2009
  10. 10. Cystic Fibrosis    Deprived opportunities Best practices Increased opportunities for all patients
  11. 11. Sickle Cell Disease
  12. 12. Sickle Cell Disease     Common life-limiting genetic disease Increased life span Frequent hospitalizations, soci al isolations Low quality of life Mehran et al 2012 Dale et al 2009 Strickland et al 2001 Musaliam et al 2008
  13. 13. Sickle Cell Disease     Unpredictable episodes of pain Begins in early childhood Rigorous and time consuming treatments Disruption of quality of life McCish et al 2005 Haines et al 2013 Quinn et al 2008 Stegenga e t al 2004
  14. 14. Sickle Cell Disease     Psychosocial Symptoms Early life events Current stressful life events Increased risk Giuseppina et al 2008 American Psychiatric Association et al 2000
  15. 15. Sickle Cell Disease   Repeated ER visits Prolonged hospitalization stays Myvik et al 2013
  16. 16. Sickle Cell Disease     Adversarial relationship between pt and medical team Under treatment of pain Mistrust/ Marginalization Decreased societal function McClain et al 2007 Ross-Lee et al 1994 Labbe et al. 20006 Laurence B et al 2006
  17. 17. Big Problems/Big Solutions
  18. 18. Possible Solutions     Overarching themes Expanding the medical view Decreased ED utilization Attention to psychosocial dilemma Brown RT et al. 2006
  19. 19. Possible Solutions     Core ideals Patient and family focused Utilizing many disciplines Meeting them where they are Anghelescu DL et al. 2006
  20. 20. Possible Solutions     Shorten hospitalization Goals of care Complex symptoms Improved care
  21. 21. Possible Solutions   Strengthen inpatient presence Build trust
  22. 22. Barriers to Solutions    Great benefit Limited resources Importance of full staff
  23. 23. Conclusion
  24. 24. Work Cited        Tuchman, LK, Schwartz, LA et al. Cystic fibrosis and transition to adult medical care. Pediatrics 2010; 125;566. Dellon EP, Shores MD, Nelson KI, Wolfe J, et al. Family caregiver perspectives on symptoms and treatments for patients dying from complications of cystic fibrosis. J Pain Symptom Manage 2010; 40 (6):829-37. Urquhart DS, Thia LP, Francis J, et al. Deaths in children with cystic fibrosis: 10-year analysis from two London specialist centres. Arch Dis Child 2013; 98:123-127. Robinson W. Palliative care in cystic fibrosis. J. Palliative Med. 2000 Summer; 3(2) 187-92 Yankaskas JR, Marshall BC, Sufian B, Simon RH, Rodman D. Cystic fibrosis adult care: consensus conference report. Chest 2004;125(1Suppl):1S–39S. Stenekes SJ, Hughes A, Grégoire MC, Frager G, Robinson WM, McGrath PJ. Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis. J Pain Symptom Manage 2009;38(6):837–48. Bradley JM, BLume SW et al. Quality of Life and Healthcare utilization in cystic fibrosis: a multicenter study. Eur Respir J. 2013 Mar;41(3): 571-7
  25. 25. Work Cited          Mehran Karimi, Sezaneh Haghpanah, Alit T. Taher, Maria Domenica Cappellini. "Beta Thalassemia: New Theraputic Modalities, Genetics, Complications, and Quality of LIfe." Anemia (2012): 1. Juanita Conkin Dale, Cindy J. Cochran, Lonnie Roy, Ethel Jerigan, Geroge R. Buchanan. "Healthrelated Quality of LIfe in Children and Adolescents with Sickle Cell Disease." Journal of Pediatric Health Care 25.4 (2009): 208-15. Ora Lea Strickland, Gerogia Jackson, Maggie Gilead, Deborah B. McGuire, Shirely Quarles. "Use of Foucs Groups for Pain and Quality of LIfe Asessment in Adults with Sickle Cell Disease." Journal of National Black Nurses Association 12.2 (2001): 36-43. Khaled Musallam, Maria D. Cappellini, Ali Taher. "Challenges Associated with Prolonged Survival of Patients with Thalassemia: Transitioning from Childhood to Adulthood." Pediatrics 121.5 (2008). Donna K McClish, Lynne T Penberthy, Viktor E Bovbjerg, John D Roberts, Imoigele P Aisiku, James L Levenson, Susan D Roseff, Wally R Smith. "Health related quality of life in sickle cell patients: The PiSCES project." Health and Quality of LIfe Outcomes 3.50 (2005). Dru Haines, Marie Martin, Susan Carson, Olivia Oliveros, Sage Greet et al. "Pain in thalassaeimia: The effects of age on pain frequency and severity." British Journal of Haematology 160 (2013): 680687. Miller ST, Sleeper LA, Pegelow CH, Enos LE, Wang WC, Weiner SJ, et al. "Predictions of adverse outcomes in children with sickle cell disease." New England Journal of Medicine 342.2 (2000): 83-9. Quinn CT, Lee NG, Shull EP, Ahmad N, Rogers ZR, Buchanan GR. "Predictions of adverse outcomes in children with sickle cell anemia: A study of the Dallas Newborn Cohort." Blood 111.2 (2008): 544-8. Kristin A. Stegenga, Peggy Ward-Smith, Pamela S. Hinds, Julie A. Routhieaux, Gerald M. Woods. "Quality of Life Among Children WIth Sickle Cell Disease Receiving Chronic Thransfuison Therapy." Association of Pediatric Oncology Nurses 21.4 (2004): 207-213.
  26. 26. Work Cited       Giuseppina Messina, Elisa Colombo, Elena Cassinerio, Francesca Ferri, Rita Curti et al. "Psychosocial aspects and psychiatric disorders in young adult with thalassemia major." Intern Merg Med 3 (2008): 33943. American Psychiatric Association. Diagnostic and Statistical manual of Mental Disorders 4th edition . Washington : American Psychiatric Association , 2000. Myvik MP, Burks lM, Hoffman RG, Dassgupta M, Panepinto JA. "Mental health disorders influence admission rates for pain in children with sickle cell disease." Pediatric Blood and Cancer 60.7 (2013): 1211-4. Ross-Lee B, Kiss LE, Weiser MA. "Should health care reform be "colorblind"? Addressing the barriers to improving minority health." Journal of American Osteopath Association 94 (1994): 664-671. Labbe E, Herbert D, Haynes J. "Physicians’ attitude and practices in sickle cell disease pain management ." Journal of Palliative Care 22.1 (2006): 64. Laurence B, George D, Woods D. "Association between elevated depressive symptoms and clinical disease severity in African- American adults with sickle cell disease." Journal National Medical Association 98 (2006): 365-369.
  27. 27. Work Cited Orens JB, Garrity ER. General overview of lung transplantation and review of organ allocation. Proc Am Thorac Soc. 2009;6(1):13–19  Santana MJ, Feeny D, Ghosh S, Lien DC. Patientreported outcome 2 years after lung transplantation: does the underlying diagnosis matter? Patient Relat Outcome Meas. 2012;3:79-84. doi: 10.2147/PROM.S32399. Epub 2012 Nov 19  Brown RT, Connelly M, Rittle C, Clouse B. "A longitudinal exam- ination predicting emergency room use in children with sickle cell disease and their caregivers." Journal of Pediatric Psychology 31 (2006): 163-173  Anghelescu DL, Oakes L, Hinds PS. "Palliative care and pediatrics." Anesthesiology Clin N Am 24.1 (2006): 145161 

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