Transcript Asia_G.Pilat

Palliative Care for
Children in India
Dr Gayatri Palat
Program Director, India
International Network for Cancer
Treatment and Research (INCTR)
Chronic Disease Load in India
A growing burden of noncommunicable diseases and chronic
diseases becoming the leading causes
of death in rural India
Joshi R, et al. Mortality data from the Andhra Pradesh Rural
Health Initiative. Int J Epidemiol 2006;35:1522–29.
Childhood Cancer
• 50,000 children with cancer every
year
• Cure rate <20%
HIV and AIDS in Children
• Estimated 70,000 children below the
age of 15 are infected with HIV
• Nearly half of reported AIDS cases
are in the 15–29 age group
• Mortality 60% by 36 months
( National AIDS Control Program )
Haemoglobinoapathies in India
High prevalence of pathological
haemoglobinopathies
(Christianson et al. 2006)
9,000 cases of thalassemia major
are born every year.
Sickel Cell Anemia
Prevalence of Sickle Cell gene in India
more than
one billion
Painful
crisis:
population. It has a complex caste
86.6%
system.
Practice
of
endogamy
g
y
and
Malaria
consanguineous marriages are very
common.
commonest
Sickle gene frequency is between
infection
5%
to
40%,
distributed
in
India’s
•
India
•
Orissa
–Precipitates
The State of Orissa where this study
painful crisis
was undertaken falls into the High
prevalence zone (21-40%).
–Death -26%
3 different geographic zones.
21 40%
21-40%
5-20%
<5%
•
High burden of genetic,
chromosomal and metabolic
disorders
Verma IC , Burden of genetic disorders in India, Indian
J Pediatr. 2000 Dec;67(12):893-8.
Palliative Care
In India
Jammu & Kashmir
Ludhiana
Himachal
Pradesh
Chandigarh
Uttaranchal
Punjab
Haryana
Delhi
Arunacha
Pradesh
Digboi
Uttar Pradesh
Rajasthan
Jaipur
Assam
Bihar
Access< 0.4%
Jharkhand
Madhya Pradesh
Gujarat
Gauhati
Calcutta
Indore
Chhattisgarh
Orissa
Cuttack
West
Bengal
Maharashtra
Mumbai
Population: 1.21 Billion
( 17% of world)
Pune
Hyderabad
Goa
Karnataka
ANDHRA
PRADESH
Chennai
Bangalore
 50% below 25 years
Kerala
Lakshadweep
Calicut
Trichur
Malappuram
Alleppey
Trivandrum
Coimbatore
Tamil
Nadu
Andaman & Nicobar Islands
Map not to scale
Children's Palliative Care
Project, India-Mumbai
Partners
•Tata Memorial Hospital
•Indian Association of Palliative Care
•ICPCN
•WPCA
A ‘two country project’ of Department of
International Development, UK
Pediatric Palliative Care,
MNJ Institute of Oncology, Andhra
Pradesh
• 84 million
• A 350 bedded
tertiary care
cancer hospital
Pediatric Oncology in MNJ IO
1000 children with cancer / year
• Low Cure Rates
• High Treatment Abandonment
“If you send me home, they will
never bring me back”
Firdous, a 12 year old girl with
Osteosarcoma
Existing socio-economic conditions
render some children vulnerable and
more at risk to abuse, exploitation and
neglect.
Integrated Pain and Palliative
Care Program for Children2007
 Zero-tolerance to pain – every
effort to keep a child pain free
 To incorporate palliative care
into the care of the child right
from the time of diagnosis.
Policy Development by the
Government
• Opioid availability
• Creation of faculty and staff position
in the department
• Inclusion of cancer palliative care in
the state sponsored insurance
scheme
Integrated Palliative Care
Palliative
Care Only
Child with
Cancer
Palliative
Therapy
Curative Care
Palliative
Coordinator
and Medical
Oncology
team
Integrated Palliative Care
Palliative
Care only
Palliative
Treatment
Curative
Therapy
End of
Life care
Symptomatic
Treatment
Cure
Pediatric Pain and Palliative
Care
Pain & Symptom
Relief
Psychosocial
Support ,
Recreation and
Rehabilitation
Support Groups for
Families
End of Life Care
Bereavement Support
Procedure
Related Pain
Delivery of Care
•
•
•
•
Out-patient and day care
In-patient consultation and care
Home-based and rural care
Phone call hotline
Outcome
New Patients (Pediatric
Palliative Care)- 2006 to 2012
600
500
400
300
200
100
0
Year ( 2006-2012)
Training and Capacity Building
in Pediatric Palliative Care
A MNJIO- International Network for Cancer
Treatment and Research (INCTR)
program, funded by OSI
•‘Personal training’
•2011
Fellowship in Pediatric Palliative
Medicine
Training
and Capacity Building
 A Pain sensitive oncology team
A module on pediatric palliative
care in the all
training courses
Students from
India, Nepal and
Africa
Drug Availability
• A center with high morphine
consumption
• Opioids
Oral and injection morphine, Fentanyl
injection and transdermal patches
• Most other palliative care
essential drugs available
…Outcome
• Early Integration of palliative care
Better QOL
Less treatment abandonment
• Smoother transition to end of life care
Lesser treatment abandonment
rate resulting in better chances of
survival
… Firdous writes
‘My tumor is growing.
I know I am not
getting better but I
don’t want to pain.
Missing home.
Please say ‘namaste’
to your friends there’
28.11.2012