BROADENING THE SPECTRUM OF

PEDIATRIC PALLIATIVE CARE

Toluwalase Ajayi, MD

Palliative Care Fellow

San Diego Hospice and Institutive of Palliative Care

Objectives

Expanding our patient base can broaden the spectrum of pediatric palliative care as perceived by our professional colleagues.

Pediatric Palliative Care

Pediatric Palliative Care

INTEGRATED PALLIATIVE CARE

Current Perceptions

Lindsay A et al.

Current Perceptions

Lindsay A et al.

Current PerceptionsEarly Re-

ferral 14.3%

End of life35.8%

Middle Course36.1%

Lindsay A et al.

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.

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.

Patient Population

Improved Quality of

Life!

Broadening The Spectrum

GeneticsNM

Cancer

Feudtner C. et al.

Genetics, NM, CancerRespiratory, GI, Other.

Broadening The Spectrum Cystic Fibrosis Sickle Cell Disease

Cystic Fibrosis

Cystic Fibrosis FoundationElborn, JS et al.Tuchman et al.

Cystic Fibrosis

Powers. P et al.

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

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

Cystic Fibrosis

Integrated model of Palliative Care.

Bourke S. et al.

Sickle Cell

Conn’s Current TherapyMiller S. et al.

Sickle Cell

McClain B. et al.Ely B. et al.

Sickle Cell

Beider S. et al.

Conclusion

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.

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