Pacific Early warning signs of Childhood Cancer Pacific Child Cancer Project Dr Jane Skeen/ Janet Masina For the Pacific working group of the National Child Cancer Network NZ Starship Blood and Cancer Centre • Background • Incidence childhood cancer • Pacific Child Cancer Project • Twinning arrangements • Early warning signs • Future Background • Survival of childhood cancer has improved dramatically over the decades • With contemporary therapy overall survival is 80% in developed countries • Improved survival as a result of: • Research based clinical trials • Supportive care • New treatment modalities 100 90 80 5 yr EFS % 70 Wilms tumour NHL ALL NBL ALL CANCER 60 50 40 30 20 10 0 19601964 19651969 19701974 19751979 19801984 19851989 19901994 19952000 80 % Survival • Applies to only 20% of the children and young people diagnosed with cancer worldwide • 80% resources consumed by this 20% • More than 80% of the children worldwide live in less affluent countries where childhood malignancies form an important part of the morbidity and adequate treatment is often not possible • 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 • Where 80% of children with cancer treated with modern therapy can be cured, 80% of the children diagnosed with cancer in the world do not have access to treatment. Our Pacific neighbours were in this 80%. • 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 Children and young people with cancer in the Pacific have not enjoyed the survival of their peers in developed health systems due to: • Late or non-diagnosis • Treatment toxicity on protocols considered standard in developed health systems • Treatment abandonment due to expense and family dislocation Childhood Cancer in the Pacific • Assuming incidence same as NZ 140 cases /million child years French Polynesia 1985-1995: 125 /million • 40% population < 15yrs (NZ: 24%) • Expect new cases Pacific/ year (100)  • • • • • • • • • • Fiji Solomons Vanuatu Samoa Tonga Kiribati Cook Islands Tuvalu Tokelau Niue 47.5 26.8 11.8 10.4 5.7 5.5 1.8 0.56 0.06 0.06 The current situation in NZ • 150 NZ children are diagnosed with cancer each year • 80% of them will be cured as a result of modern therapy • About half will live completely normal lives, the others will have residual issues related to treatment or their original cancer Various myths persist about cancer in the Pacific • Cancer is incurable • Cancer is shameful and best not diagnosed • When it occurs in Pacific Islanders, the outlook is much worse than for other ethnic groups • Cancer treatment is prohibitively expensive • Cancer treatment is too complex for Pacific health systems 3 decades Childhood Cancer in NZ Starship (Auckland) 1981-1989 (280 cases) • incidence same Polynesian vs non-Polynesian • more AML / bone tumours- less CNS tumours in Polynesian • survival ALL less in Polynesian Survival by ethnicity for children diagnosed with cancer in NZ 1990-1994 (409 cases) • no evidence of disparity in type of cancer and relative incidence between ethnic groups NZCCR data: 2000-2009 (1334 cases including NZ resident pacific islanders) • NZ resident PI: less Neuroblastoma and CNS tumours and more leukaemias than NZ European • OS 81% and survival comparable for all ethnic groups (NZ Maori, Polynesian, Asian, NZ European) -unlike AYA/adults • Paediatric Oncology Steering Group (POSG) formed by the NZ Ministry of Health in 2006 to oversee child cancer services in New Zealand • In 2012 POSG became the National Child Cancer Network (NCCN) • NCCN has 8 working groups (formerly called workstreams under POSG) NCCN • Late Effects Assessment Programme (LEAP) Working Group • Pacific Working Group • Psychosocial Working Group • Protocols and Treatment Guidelines Working Group • Fertility Preservation Working Group • Professional and Workforce Development Working Group • New Zealand Children's Cancer Registry • Adolescent and Young Adult Advisory Group Pacific Child Cancer Project -Pacific Working Group NCCN • Initiated 2006 • 2006-2008 NZAID funding • Working with Pacific health professionals to improve the outcomes of children with cancer • Presented update at PMA Fiji 2011 • Twinning relationships: Christchurch with Fiji and Starship Auckland with Tonga and Samoa Country specific models Fiji Tonga/Samoa • 40-50 new child cancer • 7-12 new cancer cases/year) cases expected each year so not enough for a cancer centre but enough to share • Treat on PI protocols at the care with an external oncology 2 centres (Suva and centre Lautoka) with remote support / twinning from • Triage as per guidelines Christchurch, NZ • Treat on PI protocols with remote support / twinning Cook Islands/Tokelau/Niue from Starship, Auckland • 1-2 new cancer cases/year) • Rational referral to NZ for • Triage as per guidelines confirmed diagnosis and initiation of reduced intensity • Transport to SSH NZ for treatment on COG protocols therapy (total treatment to be given in NZ) • Repatriation early for ongoing treatment with support from Starship, NZ 2011-2013 SIOP 26-30 October 2011, Auckland • Total of 30 PODC scholarships awarded • 10 to Pacific health professionals from Fiji, Samoa and Tonga • Pacific Island Health and culture symposium 2012-Parent support and nursing training • January and December 2012- ongoing dialogue in Fiji with ICCCPO and CCF NZ- formation Parent support group. Fiji has (through WOWS) been very successful in fund raising for children with cancer (Tonga: CCF-T and Samoa: SCS) • October 2012: Nursing training for Paediatric nurses from Samoa and Tonga, followed by attendance at PMA, Auckland • December 2012: Nursing training in Paediatric Oncology for Fijian nurses in Lautoka Pacific Nursing training September 2012-Auckland PMA December 2012-Lautoka • Considerable progress has been made in Tonga, Fiji and Samoa since 2006, with reports of child cancer survivors who have completed their treatment. • Capability and capacity for caring with children with cancer is increasing. • However late diagnosis remains a challenge, along with treatment abandonment. 2013- Early warning signs • What are Early warning signs? • Why is early diagnosis of childhood cancer important? Why is it important to make an early diagnosis? • If patients are diagnosed early the prognosis is improved • Patients with stage 1 or 2 disease have a better prognosis than those with stage 3 or 4 disease • Patients present late because of many factors • Some health professionals may not be aware that cancer can occur in children and can be cured Early Warning signs • In treating children with cancer, it is recognised that early presentation and referral are crucial • The “Saint 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) • 2005 USA- mnenomic CHILD CANCER CHILD CANCER • • • • • Continued, unexplained weight loss Headaches, often with early morning vomiting Increased swelling or persistent pain in bones, joints, back or legs Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits Development of excessive bruising, bleeding, or rash • • • • • • Constant infections A whitish colour behind the pupil Nausea which persists or vomiting without nausea Constant tiredness or noticeable paleness Eye or vision changes which occur suddenly and persist Recurrent or persistent fevers of unknown origin Developed by Patty Feist 2005 Early Warning signs • 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). • At least 85% of paediatric cancers are associated with this group of signs and symptoms. • The remaining 10 - 15 % present with unusual signs or symptoms and are difficult to diagnose. • These signs and symptoms are not exclusive for malignancies but should alert to the possibility of a malignancy. Samoan version • Collaboration with Samoa Cancer Society, SMA, and Paediatric staff at TTM • SILUAN translated into Samoan • Launch at SCS 18 July 2013 • Focus on two children • Distribution and training and raising awareness by the SCS nurse. Tonga version • Ongoing collaboration with health professionals in Tonga and Child Cancer Foundation – Tonga • Translation completed • Graphics/design in progress Ngaahi faka’ilonga fakatokanga ‘oe Kanisa ‘i he Fanau  Seek: Kumi fale’I mei he Toketa ‘o ka fuoloa ho’o ongo’i puke  Eye: Fofonga- Asi me’a hinehina he tama’uli, tepa e mata, kui pe fo’I mata hopo.  Lump: Fakafefeka pe fufula he kete, ulu, kia, fakatangata, alanga, uma, nima pe va’e pe ko ha lama.  Unexplained: ‘Ikai ha ‘uhinga lelei ki he mofi, holo e mamafa, ta’efiefiekai,mata tea pe tavaivaia, taka’uli pe fetoto’i ngofua pe tu’u ngata’a ‘ae toto  Aching: Langa hui, hokotanga hui, tu’a pe fasi ngofua ae hui.  Neurological signs: Liliu ‘ulungaanga maheni, palanisi, alu , makamaile ‘oe tupulaki ae fanau , fa’a langa’ulu pe tupu folahi fo’i ulu • • Developed in collaboration with Child Cancer Foundation-Tonga and National Child Cancer Network, Pacific working group Fiema’u tokoni: CCFT: PETANI HOUSE, Fanga ’o Pilolevu, Nuku’alofa Tonga, Phone: 676 24636, Email:[email protected] Fijian version • Ongoing collaboration with health professionals in Fiji and Paediatric Oncology Registrar (Fiji) in Christchurch • 2x translations English/Fijian English/Hindi • Initial draft using mnemonic CHILD CANCER • Graphics/design in progress CONTINUED, UNEXPLAINED WEIGHT LOSS lutu tikoga ni yago; sega ni macala na vuna HEADACHES, OFTEN WITH EARLY MORNING VOMITING vutu ni ulu sala vata kei na lualua e na mataka lailai INCREASED SWELLING OR PERSISTENT PAIN IN BONES vuvuce ni liga kei na yava, momosi ni sui, vakabibi e na bogi LUMP OR MASS ESPECIALLY, NECK, ABDOMEN vuce ni qirimo e na loma ni kete se e na domo DEVELOPMENT OF EXCESSIVE BLEEDING/ RASH vakadabuiloa ni kuli kei na ucu kalavo, dra ni vunibatida CONSTANT INFECTIONS dau tauvimate vakawasoma A WHITISH COLOUR BEHIND THE PUPIL vulavula mai na loa ni mata NAUSEA/ VOMITING Lomaloma ca kei na lualua CONSTANT TIREDNESS OR NOTICEABLE PALENESS wawale rawarawa se vulaci ni yago EYE OR VISION CHANGES WHICH OCCUR SUDDENLY AND PERSIST vakasauri ni buwawa ni mata kei na reva ni mata ka sega ni qai vinaka tale RECURRENT AND PERSISTENT FEVER OF UNKNOWN ORIGIN yaco veitarataravi ni katakata ni yago sega ni macala na cava e vakavuna Future: 2013-2014 Updating of protocols/guidelines • (PI ALL version #2 draft protocol circulated) • Addition of new protocols (Ewings sarcoma, Burkitts, ALCL, Neuroblastoma) • Addition of Nutrition guideline Pacific Child Cancer Registry- using POND4kids database (provided free by SJCRH) Position description/business case in preparation for the employment 2 community nurses in Fiji (1 in Suva, 1 in Lautoka) Launch Early warning signs (of childhood cancer): - Fiji/ Tonga – dates to be advised Database: www.POND4Kids.org NCCN Pacific Working group (2013) • Dr Jane SKEEN • Dr Scott MACFARLANE • Dr Lochie TEAGUE • Dr Peter BRADBEER • Janet MIKKELSEN Starship Blood and Cancer Centre, Starship Children’s Hospital, Auckland • Dr Rob CORBETT • Dr Isaiah IMMANUEL • Chrissy BOND Children’s Haematology Oncology Centre, Christchurch Hospital, Christchurch • Simon LALA Child Cancer Foundation (CCF) Chair The World Child Cancer Charitable Trust NZ (WCCCT), World Child Cancer (WCC) and International Confederation Child Cancer Parent Organisations (ICCCPO) • Janet MASINA Child Cancer Foundation, Family Support Coordinator Acknowledgments The World Child Cancer Charitable Trust • NZ based charity formed to raise money to support the work of the Pacific working group of the National Child Cancer Network (NZ) • collegial relationship with WCC (UK based) Projects/visits supported to date: • Visits to Samoa x 3 (March 2012 ,April 2013, July 2013) • Visits to Fiji x 2- parent support groups • Nursing training of Pacific nurses from Samoa, Tonga, and Fiji • Launch of the Early warning signs – Samoa • Attendance at PMA Tonga Acknowledgments Child Cancer Foundation NZ • Development and design and printing of the “Early warning signs” posters Samoa Cancer Society • Assistance with the development /design and launch of the “Early warning signs” Colleagues both in NZ and in the Pacific NZAid and NZMTS (HSL) POSG and now National Child Cancer Network NZ Ministry of Health PMA To the children with cancer and their families