Palliative Care Research
R. Sean Morrison, MD
President, American Academy of Hospice and Palliative Medicine
Director National Palliative Care Research Center
Director,
Hermann Merkin Professor of Palliative Care
Professor, Geriatrics and Medicine
Vice-Chair for Research
Brookdale Department of Geriatrics Palliative Medicine
Mount Sinai School of Medicine
New York, NY
sean.morrison@mssm.edu
www.nprc.org
Palliative Care 2010
• Dramatic increase in the number of clinical
palliative care programs
• Increasing public and professional awareness
and acceptance of palliative care
• Recognition of palliative care as a distinct
medical specialty
• Enhanced professional training and educational
efforts in palliative care
• Major quality and policy initiatives
But…
But
• L
Lack
k off a solid
lid evidence
id
base
b
to
t guide
id clinical
li i l
care
– Pain,
P i symptoms,
t
bereavement
b
t
• Lack of health services research to guide
delivery of care
– Hospitals, Hospice, Ambulatory Care
– Cancer,
Cancer COPD
COPD, CHF
CHF, AD
• Lack of basic science research that will lead to
new treatment modalities
– Symptoms, Resilience, Prolonged Grief Disorder
Target Areas
• Funding
• Peer review
• Infrastructure
NIH Funding for Palliative
Care (2001-2005)
• 109 PI
PIs on responsible
ibl for
f 418 awards
d
• NIH Award Types:
– 69 (17%) grants were career development awards
• 44 to junior investigators
• 17 to mid-career/senior investigators
• 8 to investigators whose status couldn’t be determined
– 275 (66%) were research awards (80% R01s, 20%
R21/R03s))
– 49 (12%) were education awards
– 25 (5%) represented other funding mechanisms.
Gelfman LP, Morrison RS. J Palliat Med, 2008
NIH Funding in Palliative
Care: 2009
• 114 active NIH grants in palliative care
• $30,031,914
$30 031 914 in FY 09 (.098%
( 098% of total NIH
budget)
– NCI:
NCI $13,179,833
$13 179 833 (0
(0.27%
27% off NCI b
budget)
d t)
– NINR: $10,679,930 (7.5% of NINR budget)
– NIA: $5,534,584 (0.8% of NIA budget)
Peer Review: Study
Section Membership 2009
•
•
•
•
•
NIA-C: 1
NIA-S:
NIA
S: 1
BMIO: 2
HSOD: 2
NCI – Career Development Subcommittee: 1
• NSAA: 2
NPCRC Internal Data
Research Infrastructure: 2009
• Medical Centers with R01 Funded Investigators
– Three or more (5)
• Brown, Harvard, Duke, Mount Sinai School of Medicine,
University of California (SF)
– Two (7)
• Case Western Reserve University, City of Hope Dartmouth,
Memorial Sloan Kettering
g Cancer Center, University
y of
Nebraska, University of Pennsylvania, University of
Rochester, Yale University
– Program Project/Center Grants (4)
• Mount Sinai School of Medicine, Duke University, University
of Illinois ((Chicago),
g ) City
y of Hope
p Cancer Center
NPCRC Internal Data
Why the Lack of
Research Funding?
• Symptoms
S
t
are unimportant
i
t t
– Interesting in so far as they guide the astute clinician to a
diagnosis
g
– Will go away when the disease is cured
• Difficult population to study
– M
Multiple
lti l symptoms
t
and
d concurrentt problems
bl
– Very sick population with limited tolerance for lengthy protocols
and instruments
– High mortality rate
– Missing data from death and disease burden
– Difficult outcomes to study
• Population that is not amenable to traditional research
methodologies
g
((RCT))
The Result:
• C
Currentt palliative
lli ti care practice
ti iis guided
id d
by:
– Data from other populations
– Results from small series of p
patients from
single institutions
– Anecdote and hearsayy
• Is this the type of care that we want for our
parents or for ourselves?
What Are the Components of
Successful Palliative Care?
• Wh
Whatt should
h ld palliative
lli ti care programs
consist of?
• What palliative care interventions improve
outcomes?
– Do these interventions/outcomes differ by
patient p
p
populations,
p
, setting?
g
• Can palliative care be integrated within
usual care?
“usual”
• How do we study this?
Research Agenda:
Recommendations
•
Single and Multi-site Prospective studies:
1. Defined study populations
 Needs-based/disease specific rather than prognosis based
samples
 Defined care sites (hospital, long-term care, home)
2. Well-defined, replicable, generalizable interventions
 Pain/symptom assessment/rx including emotional and
p
symptoms
y p
spiritual
 Communication
 Transition management
 Grief and bereavement
 Caregiver burden
Research Agenda:
Recommendations
3 W
3.
Well-defined
ll d fi d process and
d outcome
t
measures (patient and family outcomes,
care processes,
processes utilization)
 Agreement on existing measures
 Continued development
p
of new measures
4. Analyses that link individual components of
interventions to outcomes
5. Analytic methods appropriate for palliative
care
 Missing data, multiple co-morbidities, non-mortal
outcomes, inability to self-report
Additional
Recommendations
• T
Targeted
t d federal
f d l funding
f di ffor palliative
lli ti care
research
• Redesign
R d i review
i
committees
itt
tto ensure
appropriate peer review
– If asked
k d serve and
d refer
f others
th
• Recognition of the challenges of palliative care
research and limitations of traditional research
methodologies
• Support of junior investigators
NPCRC Activities
• Pilot/Exploratory
Pilot/E plorator Grants
– Goal is to provide experienced investigators with
pilot/exploratory data that will support larger
NIH/VA/Foundation
/ /
(e.g,
(
ACS)
CS) funded
f
research grant
– Over 200 applications received in past two years
• Junior Investigator Career Development Awards
– Goal is to provide 2 years of protected time for junior
investigators in palliative care
– Over
O
75 applications
li ti
received
i d iin pastt ttwo years
• Annual Research Retreat and Symposium
• Research consultation
• Creation of a Virtual Community of Palliative Care
Researchers
Palliative Care Research
Publications
Slide courtesy of
Neil Hagen, MD