Expanding the spectrum of pediatric palliative care final
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BROADENING THE SPECTRUM OF
PEDIATRIC PALLIATIVE CARE
Toluwalase Ajayi, MD
Palliative Care Fellow
San Diego Hospice and Institutive of Palliative Care
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Objectives
Expanding our patient base can broaden the spectrum of pediatric palliative care as perceived by our professional colleagues.
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Pediatric Palliative Care
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Pediatric Palliative Care
INTEGRATED PALLIATIVE CARE
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Current Perceptions
Lindsay A et al.
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Current Perceptions
Lindsay A et al.
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Current PerceptionsEarly Re-
ferral 14.3%
End of life35.8%
Middle Course36.1%
Lindsay A et al.
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Current Perceptions
Family reluctance to accept hospice & palliative care.
4.8 95.2
There is a perception by families that hospice & palliative care indicates health
professionals are giving up.
5.5 94.5
Knapp C. et al.
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Patient Population
Symptom Management
Communication
Decision Making
Care Coordination
DNR
Other
0 10 20 30 40 50 60 70
58.1
48.5
42.1
35.3
11.8
9.1
Feudtner C. et al.
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Patient Population
Improved Quality of
Life!
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Broadening The Spectrum
GeneticsNM
Cancer
Feudtner C. et al.
Genetics, NM, CancerRespiratory, GI, Other.
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Broadening The Spectrum Cystic Fibrosis Sickle Cell Disease
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Cystic Fibrosis
Cystic Fibrosis FoundationElborn, JS et al.Tuchman et al.
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Cystic Fibrosis
Powers. P et al.
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Cystic Fibrosis
Patient 1 Patient 2 Patient 30
2
4
6
8
10
12
14
3 months6 months9 months 12 monthsafter hospice
# of hospitalizations before and after hospice
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Cystic Fibrosis
Patient 1 Patient 2 Patient 30%
10%
20%
30%
40%
50%
60%
70%
at referral3 months 6 months9 months
FEV1 at time of Referral and after
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Cystic Fibrosis
Integrated model of Palliative Care.
Bourke S. et al.
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Sickle Cell
Conn’s Current TherapyMiller S. et al.
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Sickle Cell
McClain B. et al.Ely B. et al.
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Sickle Cell
Beider S. et al.
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Conclusion
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Work Cited Thompson LA, Knapp C, et al. Pediatricians’ Perceptions of and
Preferred Timing for Pediatric Palliative Care. Pediatrics 2009; 123; e777. DOI: 10.1542/peds.2008-2721.
Knapp C, Thompson LA. Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California Palliat Med 2012; 26:3 268-274.
Feudtner C, Kang T, et al. Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study. Pediatrics 2011;127;1094. DOI: 10.1542/peds.2010-3225.
Cystic Fibrosis Foundation. Cystic Fibrosis. Foundation Annual Patient Registry Report. Bethesda, MD: Cystic Fibrosis Foundation; 2008.
Elborn JS, Shale DJ, Britton JR. Cystic Fibrosis: current survival and population estimates to the year 2000 [published correction appears in Thorax. 1992;47(2):139]. Thorax. 1991;46(12):881– 885.
Tuchman LK, Schwartz LA, et al. Cystic Fibrosis and Transition to Adult Medical Care. Pediatrics 2010;125;566. DOI: 10.1542/peds.2009-2791.
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Work Cited Powers PM, Grestle R, et al. Adolescents With Cystic Fibrosis: Family
Reports of Adolescent Health-Related Quality of Life and Forced Expiratory Volume in One Second. Pediatrics 2001;107;e70. DOI: 10.1542/peds.107.5e70.
Bourke SJ, Doe SJ, et al. An Integrated Model of Provision of Palliative Care to Patients with Cystic Fibrosis. Palliat Med 2009 Sept;23(6):512-7.
Bope and Kellerman: Conn's Current Therapy 2012, 1st ed. Miller SC, Sleeper LA, Pegelow CH, et al. Predictions of adverse
outcomes in children with sickle cell disease. N Engl J Med. 2000; 342: 83-89
McClain B, Zain ZN. Pediatric Palliative care: a novel approach to children with sickle cell disease. Pediatrics. 2007; 119:612-614
Ely B, Tasa JCI. Pain in children-early pain experiences can impact future health. The Pain Community News. 2008; 8:5. www.painfoundation.org/Publications/PCN08winter.pdf
Beider S. An ethical argument for integrated palliative care. Evid Based Complement Alternat Med.2005;2:227– 231