Download Late Effects Working Group

Bridging the Gap- Improving the
Outcomes of children with Cancer
in the Pacific
Fiji 1 December 2016
Dr Jane Skeen- for the NZ NCCN Pacific working group
Outline
 Background
 Current situation in NZ
 NZCCR 2000-2009
 The Gap
 NCCN Pacific Child Cancer Project
 Orientation to philosophy of treatment
 8 years of progress/enhancements
 Challenges faced
 Future
Background
1930s- childhood cancer reported as separate
disease from adults
1940s -“Cancer- Child Killer”
“Cancer kills children too”
“Acute leukaemia – death sentence”
1950s-Clinical cooperative trials- USA
1960s- improvement in survival
1970s- communication about dying
1980s- expectation of cure
Background
Improved survival as
a result of:
 Research based clinical trials
 Supportive care
 New treatment modalities
100
90
80
70
5 yr EFS %
 Survival of childhood
cancer has improved
dramatically over the
decades
 Last 2 decades cost
disproportional to
increments in
survival
 With contemporary
therapy overall
survival is 80% in
developed countries
Wilms tumour
NHL
ALL
NBL
ALL CANCER
60
50
40
30
20
10
0
19601964
19651969
19701974
19751979
19801984
19851989
19901994
19952000
The current situation in NZ
 150 children (<15yrs) are diagnosed with cancer each
year
 80% of them will be cured as a result of contemporary
therapy
 About half will live completely normal lives, the others
will have residual issues related to treatment or their
original cancer
 Incidence of Child Cancer (NZCCR 2000-2009)
149.3 per 10,000 children per year (age 0-14.9)
Other epithelial
Germ cell
3%
tumours,
5%
Soft tissue
sarcomas,
7%
Bone
tumours,
5%
Hepatic tumours,
1%
Leukaemias,
34%
Renal tumours,
5%
Retinoblastoma,
3%
Neuroblastoma,
7%
CNS
tumours,
21%
Lymphomas,
9%
Incidence of Common Cancers by
Ethnicity
Leukaemia
CNS tumours
Lymphoma
Neuroblastoma
Soft Tissue
Sarcomas
Germ Cell
Tumours
Age Adjusted Incidence (per 1,000,000 per year)
Non-Maori/NonMaori
Pacific Peoples
Pacific
46.5
71.5
52.4
26.0
29.1
35.5
11.1
11.9
14.0
10.0
5.3
11.0
8.5
3.2
12.5
8.5
15.9
5.2
International incidence of Child Cancer
New Zealand
2000-2009
Germany
2000-2009
Great Britain
1996-2005
Australia
1997-2006
US (SEER)
2007-2011
Age standardised
rate
Age standardised
rate
Age standardised
rate
Age standardised
rate
Age standardised
rate
149
160
138
156
173
Leukaemias
51
56
48
52
54
Lymphomas
13
16
13
16
16
CNS tumours
32
36
36
35
44
Neuroblastoma
10
12
10
9
11
Retinoblastoma
4
4
4
4
4
Renal tumours
7
12
9
8
8
Hepatic tumours
1
4
2
3
3
Malignant bone tumours
8
4
5
7
7
11
8
10
8
11
7
4
5
6
6
Overall childhood cancer
Soft tissue sarcomas
Germ cell tumours
Survival by Prioritised Ethnicity
100
90
Relative survival (%)
80
70
60
50
40
30
20
10
0
0
1
Maori
2
3
4
5
6
7
Time since diagnosis (years)
Pacific Peoples
8
9
Non-Maori/Pacific Peoples
10
International survival of Child Cancer
Conclusions
Child Cancer incidence in New Zealand is
comparable to elsewhere in the developed world
There are no significant differences in incidence
between Maori, Pacific Peoples and NonMaori/Non-Pacific Peoples
Relative Survival in New Zealand is comparable
with elsewhere in the developed world
In New Zealand relative survival for Maori and
Pacific Peoples is comparable to Non-Maori/NonPacific Peoples
The Gap
 Children with cancer are not all “equal”
 Where they live does make a difference to whether they are
offered treatment, survive or die
 More than 80% of the children worldwide live in less affluent
countries where childhood malignancies form an important
part of the morbidity and access to adequate treatment is
often not possible
 80% resources consumed by the 20% treated with modern
therapy
 Cure rates of around 50% for many types of childhood cancer
are possible in less well resourced countries with lower cost
therapies, providing basic services can be organised and
supported
Country or
Region
Access to
diagnosis
Access to
treatment
EFS of
treated
patients
Cure rate
Highincome
countries
100%
100%
80%
80%
Eastern
Europe
95%
95%
70%
63%
Guatemala 44%
100%
43%
19%
China
95%
10%
70%
7%
Malawi
20%
30%
40%
2%
Prior to 2006 our Pacific neighbours were in the 80%
where little or no access to child cancer care
As efforts to reduce mortality from infectious diseases
are successful, cancer is of increasing importance as a
cause of morbidity and mortality
In NZ-cancer is the 2nd most common cause of death
in childhood behind accidents
In Pacific – cancer 4th
Concerns in NZ were raised regarding:
 Small number of cases diagnosed: What happened to the
remainder?
 Of the small numbers diagnosed only some offered treatment and of
those only small percentage accept and continue with treatment
 Very small proportion accepted for treatment in New Zealand (NZ)how were these cases selected?
 High cost of treatment in NZ ~ NZ$120,000 per case.
It could potentially be done much cheaper in the Pacific: more cases
could be offered treatment
 High mortality if returned to Pacific Islands on treatment
(before training of Pacific health professionals undertaken)
 Expertise is not transferred to the Pacific if the children are treated in
NZ
Childhood Cancer in the Pacific
 Assume incidence same
as NZ @140/million child
years
40% population<15yrs
(NZ: 24% <15 yrs)
 French Polynesia has
published a rate of
125/million between
1985 and 1995
 Need for a Pacific Child
Cancer registry- as of
2015-in development
 PNG
420





Fiji
Solomons
Vanuatu
Samoa
Tonga
47.5
26.8
11.8
10.4
5.7





Kiribati
Cook Islands
Tuvalu
Tokelau
Niue
5.5
1.8
0.56
0.06
0.06
Concept of Twinning
Resourced centre with a less resourced
centre/country
e.g: St Jude (Memphis, USA) with Recife Brazil
Fundamental Concepts for Paediatric Oncology
Twinning Programme
1. People
2. Commitment
3. Planning
4. Comprehensive treatment
5. Sharing of knowledge
6. Funding
7. Community Awareness and Participation
8. Accountability
Components for Establishing a Twinning
Programme
 Initial assessment
 Identify Local leaders
 Grassroots NGO
 Establish an initial 5 year plan
 Establish collaborative agreement
 Establish and implement hospital-based tumour registry
 Financial assistance
 Targeted education and training
 Telecommunication and web conferencing
 Follow-up site visits
 Celebrate and publish success
 Expand programme
International experience –Twinning models
Success
 Work with local political and
health leaders to ascertain their
view of their needs
 Collaboratively work towards a
solution which addresses their
priorities
 Accept that externally driven
solutions will fail
 Acknowledge that, in spite of
taking all the above steps, the
time course of implementation of
a basic child cancer strategy is
subject to many variables, only
some of which are controllable
Service failure when lack of:
 continuity of external support
 critical resource
 strong local leadership
 successful outcomes
Pacific working group was set up in 2006
1. To review outcomes of children referred
from the Pacific
2. To investigate whether twinning with Pacific
nations was feasible
3. To initiate cooperative programmes with
those Pacific countries which regarded child
cancer as a priority health area
Various myths persisted about cancer in the Pacific
Cancer is incurable
Cancer is shameful and best not diagnosed
When it occurs in Pacific peoples, the outlook is
much worse than for other ethnic groups
(not supported by NZCCR)
Cancer treatment is prohibitively expensive
Cancer treatment is too complex for Pacific health
systems
Pacific Child Cancer Project 2006-2008
Funded by NZAID
 Visits by PI work stream to
Tonga/Samoa/Vanuatu/Fiji/Cook
Islands
 Meetings with key clinicians,
health service administrators and
politicians
 Facilitated with mentoring and
advice/guidance from
Debbie Sorensen (HSL)
Dr Kiki Maoate
Dr Api Talemaitoga
Three regional meetings with work
stream and Pacific health
professionals
 Auckland May 2007
(in conjunction POSG meeting)
 Apia September 2007
(in conjunction PMA )
 Suva May 2008
Participation/presentation
- annual meetings of the
Pasifika Medical Association
 Nursing education/training in
Auckland and Christchurch for nurses
from Fiji and Tonga
 Laptops/digital camera for
Samoa/Tonga and Fiji
Country specific models
 The Pacific is a region with a
small, widely dispersed
population which makes
models successfully used
elsewhere inappropriate
 Different needs within the
region
 Different capabilities and
priorities
 Different solutions
 Different speed of
implementation
 Is curative therapy for
children with cancer a
priority?
 Is the paediatric
infrastructure developed?
 Is finance available for off
island referral?
 Are there sufficient patient
numbers to develop
expertise at the paediatric
centre?
Fiji
 Child Cancer treatment a
priority
 2 Paediatric centres
(Lautoka, Suva)
 Limited finance for off-island
referral but
public health care available for
treatment in Fiji
 40-50 new child cancer cases
expected each year
Solution:
 Treat on PI protocols at the 2
centres with remote support/
twinning from Christchurch, NZ
 Visits by Christchurch team to Fiji
 Regular tele-conferencing with
Suva and Lautoka
Tonga
 Child Cancer treatment a
priority
 Paediatric centre Vaiola
Hospital, Nuku’alofa
 Limited finance for
off-island treatment
 Small numbers (<10 new
cancer patients/year) so not
enough for a child cancer
centre but enough to share
care with an external
oncology centre
Solution:
 Diagnose
 Triage as per guidelines
 ALL-start PI ALL1 and if
favourable response Day 8
send eligible patients to
Starship Auckland for
induction/consolidation
then repatriate to complete
protocol in Tonga with
remote support from
Starship
 Other cancers as per
guideline
Samoa
 Child Cancer treatment being
considered as a priority in
2007 – confirmed 2010
 Paediatric centre at TTM
hospital, Apia
 Limited finance for off island
treatment
 Small numbers (<10 new
cancer patients/year) so not
enough for a child cancer
centre but enough to share
care with an external oncology
centre (Starship, Auckland)
Solution:
 Diagnose, triage as per
guidelines
 Model as for Tonga
Cook Is / Niue / Tokelau
 Child Cancer treatment a priority
(and expectation)
 Paediatrics only in Rarotonga
(Cook Islands)
 Very few patients
(1 / 1-2 years)
 Finance available
(entitlement to care in NZ)
Solution:
 Transport to NZ for
treatment on COG
and other established
protocols
Vanuatu (as of 2007)
 Child Cancer treatment not
a priority
 Limited paediatric expertise
 Limited finance for off
island treatment
Solution:
 Provide information
including palliative care
guidelines
 Remain available for advice
and discussion
Summary
 Co-operative program
development is vital
 Establish relationships with
key clinical and political
decision makers
 Confirm that child cancer
care is a priority
 Identify champions with
local status
 Commit to the long term
 Identify the needs
 Understand that needs are
different and solutions
which work somewhere
else may be inappropriate
 Assemble resources
relevant to the area and
develop protocols and
guidelines cooperatively
with those who will need to
use them
In collaboration with Pacific Island health
professionals, agreement reached on:
 A philosophy behind treatment protocols
 Triage guideline (includes who will receive treatment
aimed at cure “good risk” cancers-and who will be
supported by palliative measures)
 Twinning relationships
Christchurch with Fiji – treat children in country with support
from Christchurch Paediatric Oncology
Starship with Tonga, Samoa, Vanuatu,
Cooks, Tokelau, Niue
Tonga and Samoa- “intensive” part of protocol at Starship Blood
and Cancer then return to complete “less intensive”
chemotherapy in country with ongoing support from Starship
Associated themes
The need for palliative care guidelines for those
not eligible for curative therapy and supportive
care guidelines
Recognition of the importance of child cancer
registration in the Pacific
With the PI protocols, survivors are unlikely to
have debilitating late effects from treatment
which limit their quality of life in an environment
with limited rehabilitation or welfare services
Triage – identifying ‘good risk’ cancers
Principles
 an initial “cut-off” level of around 70% overall survival in developed
countries is reasonable
 it is assumed that the 70% overall survival will translate into a lower
survival in the Pacific Island Country (PIC)
 cure should be attained at minimal cost of significant late effects –
the PIC should not be burdened with caring for cured but
significantly disabled survivors of childhood cancer
 cure should be attained without significant financial cost to the PIC
 cancers potentially curable with treatments entirely or
predominantly delivered in the PIC
 those children whose cancer is less curable should be treated
according to the Palliative Care Guidelines
 these are guidelines – each case should be considered on its
individual merits
Triage – identifying ‘good risk’ cancers
1. Acute Lymphoblastic Leukaemia
2. Lymphoma
• Hodgkin lymphoma
• Non-Hodgkin lymphoma
• T-cell non-Hodgkin lymphoma
• B-cell non-Hodgkin lymphoma
• Anaplastic large cell lymphoma
3. Wilms Tumour
4. Retinoblastoma
5. Germ cell tumours
Most cases, even those with metastases, are very curable with a
combination of chemotherapy and surgery.
6. Acute Promyelocytic Leukaemia: provided ATRA available
7. Hepatoblastoma: non-metastatic cases with a strong likelihood
of resection (pretext stages 1, 2 and 3)
.
8. NeuroblastomaStage 1 and 2 neuroblastoma is treatable.
Unresectable, localized neuroblastoma in an infant is readily curable with nonintensive chemotherapy and surgery.
Most stage 3 and all stage 4 disease should receive palliative care
9. Soft Tissue Sarcoma (Stage 1 and 2 disease)
10. Bone tumours- Osteosarcoma and Ewings sarcoma require complex
multimodality care-maybe inappropriate to offer treatment in these patients.
Amputation only may be an option in some- as long as prosthesis available.
11. Brain tumours – only those curable with surgery +/- radiotherapy
Most cases should not be offered anti-cancer therapy. However, some are curable
with surgery alone; if such a case is confidently identified, it would be reasonable to
offer neurosurgery.
Germinoma (non-secretory intracranial germ cell tumour) in an adolescent is
readily curable with radiotherapy only and should be considered for treatment.
- these are guidelines
- each case should be considered on its individual merits
Supportive Care Guidelines
 Blood product support
 New Patient assessment
 Blood produce support
 Cytotoxic administration
 Drug dosages
 Emergencies
 Infection recognition and
management
 Symptom control
 Palliative care
Treatment Protocols
 Acute Lymphoblastic
Leukaemia (ALL)
 Acute Promyelocytic
Leukaemia
-Fiji only if ATRA available
 Hodgkin’s lymphoma
 Burkitt Lymphoma
 Wilms tumour
 Germ cell tumour
 Retinoblastoma
 Bone tumours (Fiji)
8 Years of progress and enhancements
Gains
 Identifying clinical and political champions in each country
 Identifying clinical lead for each service
 Ongoing training and education- in-country, regionally or in NZ
 Weekly TC CHOC and Fiji
 Rational referral to NZ for confirmed diagnosis and initiation of
reduced intensity therapy as per triage guidelines
(Tonga and Samoa and Fiji when indicated)
 Repatriation early for ongoing treatment with support from NZ
 VMS by Starship or CHOC team annually
 Visit to Fiji by Starship Palliative Care Nurse Practitioner 2015
SIOP
26-30 October 2011, Auckland
Total of 30 PODC
scholarships awarded
10 to Pacific
health professionals
from Fiji, Samoa and
Tonga
Pacific Nursing training
• September 2012-Auckland
• December 2012-Lautoka
Gains
 Tonga – 100% ascertainment cases
 Fiji-near ascertainment of cases
 Samoa- improvements in referrals
 Development PI ALL#2 protocol – more intensive
 Parent group support -Tonga, Samoa and Fiji
 Launch Early warning signs in Samoa, Tonga and Fiji
 2015- presentation Fiji “National Paediatric Oncology plan” to MOH
 November 2015 Tonga- TMA- focusing on cancer and looking to progress
made in childhood cancer
 Proposal submitted to Fiji MOH for funding (by WCCCT ) of a community
nurse based at Lautoka Hospital, with vehicle
Gains
 Cohort children who have finished treatment
 Gradual increased capability and capacity
 Ripple effect of improving care for children with cancer impacts of care
of other sick children
 Development of an integrated Pacific Children’s Cancer Registry
Early Warning signs
 In treating children with cancer, it is recognized that early
presentation and referral are crucial to identifying the good risks
cancers to be treated as per the Pacific Child Cancer protocols.
 The “St Siluan” Warning signs of childhood cancer were developed
by the South African Children’s Cancer Study group in 1999 and, in
2000 endorsed internationally by International Confederation
Childhood Cancer Parent Organisations (ICCCPO)
 When these signs have been used at primary health level by
primary health workers, there has been reported an increase in not
only children with cancer, but children with other chronic disease
identified. The list of warning signs has been found useful in
promoting awareness of cancer in children.
 To raise awareness of childhood cancer and promote early
diagnosis, in the Pacific the Early warning signs are being translated
/adapted for each respective country (Samoa, Tonga, Fiji, Cook
Islands).
Why?
To achieve early diagnosis of a cancer
To identify also other sick children
To achieve early referral to Paediatric Service
Parent Support
 Samoa Cancer Society
 Fiji Cancer Society
 WOWS Kids Fiji
 Child Cancer Foundation of
Tonga
- inaugurated March 2008
alongside clinical expertise
Common Challenges faced in developing
a Twinning Programme
 Late or non-diagnosis or incorrect diagnosis
 Treatment refusal
 Treatment toxicity on protocols considered
standard in developed health systems
 Procurement anti- cancer medication
 Treatment abandonment due to expense and
family dislocation
 Shortage of trained nurses
 Insufficient funds
 Cost and availability of medication
 Failure when project not driven locally
 Hospital detention (Africa, Asia, Latin America
and Eastern Europe)
SIOP PODC Global Taskforce
Challenges (2006-2016)
Political unrest
 Tonga :
 Fiji :
August 2006 riots in central Nuku’alofa
2 x military coups May 2006 and October 2006
Natural disasters in the Pacific
 Samoa:
29 September 2009
 Samoa:
13 December 2012
 Vanuatu:
13 March 2015
 Fiji:
20 February 2016
-Tsunami
-Cyclone Evan
-Cyclone Pam
-Cyclone Winston
May result in change in priorities and reallocation of funding post disaster
Challenges
 Late referrals/ late diagnosis
 Making the correct diagnosis
 Review of imaging, histology
 Abandonment of treatment
 Supply of anticancer medicines
 Medical and Political champions
 Succession planning and local leadership
 Ongoing training and education
The Future
Last 50 years have gone from statements like:
“Leukaemia in children-a death sentence”→
childhood cancer cures > 80% (developed world)
Bridging the Gap
Improving survival of children with cancer in
the Pacific
“Bridging the Gapin Women’s Health in Fiji”
 “A clear message emanating from the meeting is the recognition by
the medical and nursing professions that bridging the gaps in
women’s health in Fiji would require that stronger partnership,
collaboration and coordination must take place within clinical
settings and also in non-clinical settings.
 Bridging gaps will engage discussions at policy and programme
level within health and outside of the health sector.
 Community and family engagement in the discussions of
reproductive health is necessary.
 The socio-cultural aspects of reproductive health at all levels must
be part of the equation to bridging these gaps”
Fiji Society of Obstetrics and Gynaecology (FOGS) meeting 8-10 August 2014
Bridging the gap
 medical and nursing
 stronger partnership
 collaboration and coordination
 clinical and non-clinical settings
 policy and programme
 within health and outside of the health sector
 community and family engagement
 socio-cultural
all components Pacific Child Cancer Project
Bridging the Gap
Alignment Sustainable Development Goals – No.3
Alignment with country’s Health Plan
“Support and improve the health of the nation by: providing quality, effective and sustainable health
services and being accountable for the health outcomes” Tonga MOH 2015
Vision: That no child should die of cancer
Aim: To improve and optimise treatments throughout the world
All children should have access to state of the art outcomes
Is this achievable?
What needs to happen for this to occur?
Future
Ongoing collaboration with health professionals
and Parent groups/NGOs
Improving early diagnoses and referral (when
indicated) of good risk cancers
Increasing capability and capacity
Increasing intensity Pacific protocols
Improved access to drugs/ imaging techniques
radiotherapy
In time- adding more “good risk cancers”
Establishment Pacific Child Cancer Registry
Encouraging other twinning realtionships
Responses from leaders in Childhood Cancer
 Over the past 15 years or so, importantly, there has been an increasing
awareness that we need to focus on the cancer experience and quality of
life of children with cancer
 Childhood cancer is arguably the most remarkable and rewarding story
of cancer treatment in the last half century
 While the number of children affected by cancer is relatively small, the
experience has a ripple effect not only for the child, but also for the
family
 Research should be aimed at improving the cancer experience and longterm outcomes through the systematic development, evaluation and
dissemination of interventions
 We urgently need to develop therapies that will reduce the need for
drugs and other treatments that are associated with long-term, adverse
health outcomes
Pacific Working group (2016)
 Dr Jane SKEEN
 Dr Scott MACFARLANE
 Dr Lochie TEAGUE
 Dr Peter BRADBEER
 Bridget SMITH
Starship Blood and Cancer Centre, Starship Children’s Hospital, Auckland
 Dr Rob CORBETT
 Chrissy BOND
Children’s Haematology Oncology Centre, Christchurch Hospital, Christchurch

Dr Michael SULLIVAN formerly Christchurch , now RCH Melbourne
 Simon LALA ONZM
Chair The World Child Cancer Charitable Trust NZ (TWCCCT),
Child Cancer Foundation (CCF)-Life member and former board member and Chair.
Board member World Child Cancer (WCC) and Child Cancer International
(CCI- formerly International Confederation Child Cancer Parent Organisations -ICCCPO)
 Janet MASINA
Child Cancer Foundation, Senior Family Support Coordinator

Melissa WILSON
National Executive Officer NCCN
Acknowledgments
Colleagues both in NZ and in the Pacific
NZAid
POSG and now National Child Cancer Network
NZ Ministry of Health
Acknowledgments
The World Child Cancer Charitable Trust
 Auckland (NZ) based charity formed to raise money to support
the work of the Pacific working group of the National Child
Cancer Network (NZ)
 Has a collegial relationship with WCC (UK based)
Projects supported to date:
 Visits of working group members to Samoa and Tonga
 Visits to Fiji –re: parent support groups
 Nursing training of Pacific nurses from Samoa, Tonga, and Fiji
 Launch of the Early Warning Signs -Samoa, Tonga
 Establishment Pacific Child Cancer Registry
 Commitment to fund Community nursing position in Lautoka,
Fiji
Acknowledgments
 Child Cancer Foundation NZ
Development and design and printing of the “Early warning
signs” posters Samoa and Tonga and the design of the Fiji
posters
 Child Cancer Foundation-Tonga – Assistance with the
development and design and launch EWS
 Samoa Cancer Society
Assistance with the development and design and launch EWS
 WOW Kids and Ministry of Health and medical Services
Assistance with the development and design and for printing
of EWS-Fiji and the launch EWS