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Childhood CancerRising to the challenge

Childhood Cancer: Rising to the challenge is published by the International Union Against Cancer(UICC) in the framework of the World Cancer Campaign. For more information on the campaign, pleasevisit our website (www.uicc.org) or contact Jose Julio Divino, World Cancer Campaign Coordinator, [email protected]

Design and layout: Carlos OcampoEditorial: Páraic Reamonn© UICC 2006

International Union Against Cancer (UICC)62 route de Frontenex1207 Geneva, SwitzerlandTel +41 22 809 1811Fax +41 22 809 [email protected]

TABLE OF CONTENTS

Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5Isabel MortaraExecutive Director, UICC

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7Tim EdenInternational Society of Paediatric Oncology (SIOP)

1. The burden of childhood cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Paola Pisani, Clarisse HeryInternational Agency for Research on Cancer (IARC)

2. The first 10 countries of the My Child MattersTM initiative . . . . . . . . . . . . . . . .15Eva Steliarova-Foucher, Clarisse Hery, Paola PisaniInternational Agency for Research on Cancer (IARC)

3. Psychosocial aspects of childhood cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .31Christine Eiser, Jimmie Holland, Christoffer JohansenInternational Psycho-Oncology Society (IPOS)

Contributors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .43

Childhood Cancer. Rising to the challenge 3

Abbreviations

CIA Parkin DM, Ferlay J, Hamdi-Cherif M, Sitas F, Thomas JO, WabingaH, Whelan SL (eds.) (2003) Cancer in Africa: Epidemiology and Prevention.

IARC Scientific Publications no. 153. Lyon: IARCPress.

CIFC Parkin DM, Whelan SL, Ferlay J, Teppo L, Thomas DB (eds.) (2004)Cancer Incidence in Five Continents, vol. 8. IARC Scientific Publicationno. 155. Lyon: IARCPress.

Globocan 2002or Globocan

Ferlay J, Bray F, Pisani P, Parkin DM (2004) Globocan 2002: Cancer

Incidence, Mortality and Prevalence Worldwide. IARC CancerBase no. 5version 2.0. Lyon: IARCPress.

ICD10 WHO (1992) International Statistical Classification of Diseases and Related

Health Problems (10th revision). Geneva: World Health Organization.

IICC-1 Parkin DM, Stiller CA, Draper GJ, et al. (eds.) (1988) International

Incidence of Childhood Cancer. IARC Scientific Publications no. 87. Lyon:International Agency for Research on Cancer.

IICC-2 Parkin DM, Kramárová E, Draper GJ, et al. (eds.) (1998) International

Incidence of Childhood Cancer vol. 2. IARC Scientific Publications no.144. Lyon: International Agency for Research on Cancer.


Cancer in children is asmall fraction of theglobal cancer burden,

as our colleagues in theInternational Agency forResearch on Cancer (IARC)make clear. Yet for childrenwith cancer and their families itcan be deeply distressing.

Especially this is so inpoorer countries, where child-hood cancer too often isdetected too late for effectivetreatment and where appropri-ate treatment is too often notavailable or affordable.

In these countries, roughly60% of children with cancerdie. Many children are neverdiagnosed at all, many are diag-nosed too late, and when adiagnosis is made the treatmentoptions may be limited. Yetrelatively little money can makea real difference.

UICC launched its WorldCancer Campaign in 2005 toscale up awareness of the fightagainst cancer. The campaign isa response to the Charter ofParis adopted during the WorldSummit against Cancer for theNew Millennium in 2000. Thiscalled for “an invincible alliance– between researchers, health-care professionals, patients, gov-ernments, industry and media –

to fight cancer and its greatestallies, which are fear, ignoranceand complacency.”

This report gives us aglimpse of what such analliance might look like.

We are grateful to DrPaola Pisani, Dr Eva Steliarova-Foucher and Mme ClarisseHery of IARC and ProfChristine Eiser, Dr JimmieHolland and Dr ChristofferJohansen of the InternationalPsycho-Oncology Society(IPOS) for sharing with us theirepidemiological and psychoso-cial expertise.

We are grateful to ProfTim Eden, President of theInternational Society ofPaediatric Oncology (SIOP) – a key organization in this field– for writing the introduction.We are grateful to SIOP andthe International Confederationof Childhood Cancer ParentOrganisations (ICCCPO) forthe photos on pp. 31, 32, 33,35, 36, 38, 41 and 42. A photois worth 1,000 words: thesecome from “Through my Eyes:A day in the life of childrenwith cancer around the world”,a joint ICCCPO-SIOP projectthat generated an inspirationalexhibition at SIOP’s Congressin Vancouver in 2005.

We are grateful to thesanofi-aventis department ofhumanitarian sponsorship,which has generously fundedboth this report and the child-hood cancer campaign ofwhich it is a part, and in partic-ular to its Director, Mme CatyForget, who has worked withus in a spirit of true partnership.

We are grateful to the USNational Cancer Institute andin particular to Dr Joe Harford,who found additional fundingfor our My Child Matters ini-tiative, enabling us to financemore projects than the 10 orig-inally envisaged.

And we are grateful to DrFranco Cavalli of the OncologyInstitute of SouthernSwitzerland (IOSI), who chairsthe Advisory SteeringCommittee for our childhoodcancer campaign, and to all thecommittee members, represent-ing a wide range of cancer-fighting interests.

Our World CancerCampaign has taken only itsfirst steps. The challenges aremany, but the opportunities aregreat, and already we can seethat together we can make adifference. The time to act isnow!

PREFACEIsabel Mortara

ocampo

Over the last three tofour decades tremen-dous advances have

been made in resource-richcountries in the diagnosis, man-agement and cure of childrenwith cancer. We have movedfrom little expectation of sur-vival in the 1960s to 80% curerates for many childhoodtumours. The human genomeproject has opened new avenuesof research into cellular resist-ance and treatment failure.Modern molecular and imagingtechniques are adding to theaccuracy and precision of diag-nosis and residual disease recog-nition. With these advances, weare focusing more and more onoptimising psychosocial support,improving quality of life andminimising toxicity, evenreducing intensity of treatmentfor good-risk patients.

These advances, however,have exposed a huge dividebetween resource-rich countriesand resource-limited countries.Of the children who developleukaemia and cancer, 80% live

in poor or still developingcountries where in the face ofother huge challenges, includingstarvation, drought, natural dis-asters and infection, cancer isnot yet considered a priority.

In many countries whereinfectious diseases have beenbrought under at least partialcontrol, however, cancer in allages, including children, is ris-ing in importance. In individualhospitals where childhoodmalignancy has been addressed,children’s services as a wholeappear to have benefited.

With its World CancerCampaign (UICC, 2005), theInternational Union AgainstCancer has declared a globalwar on cancer. In the first yearof this campaign, UICC initiat-ed a project on childhood can-cer entitled My Child Matters,in partnership with the sanofi-aventis department of humani-tarian sponsorship and in collab-oration with the InternationalSociety of Paediatric Oncology(SIOP), the InternationalConfederation of Childhood

Cancer Parent Organisations(ICCCPO) and the USNational Cancer Institute.Money has been allocated to 14projects in the 10 low- andmiddle-income countries dis-cussed in chapter 2, to deepenawareness and improve thecoordination of care and thetraining for professionals work-ing with cancer in children(Burton, 2006).

At the heart of this projectis a twinning between resource-rich and resource-limited coun-tries to find ways to transferinformation, technology, sup-port and empowerment for thedevelopment of a coordinatedfight against cancer. We do notwant it to take another 30 to 40years for all children in theworld who develop cancer tohave a chance of cure. We hopethat we can all work together tobring about rapid change for thesake of the 100-200,000 chil-dren in the world who current-ly have no hope and often noaccess even to palliative care.


INTRODUCTIONTim Eden

Adrian Burton (2006) The UICC My Child Matters initiative awards: Combating cancer in children inthe developing world. Lancet Oncology 7:13-14.

UICC (2005) World Cancer Campaign: The Time to Act is Now. Geneva: International Union AgainstCancer (UICC).

References

Cancer is rare in childrenunder 15, compared toadults; but cancer pat-

terns at a young age presentpeculiar characteristics anddeserve separate analysis.

Unfortunately, good-quali-ty population-level statistics onthe occurrence of cancer atyoung ages have been more dif-ficult to obtain than in adults(Parkin et al., 1988) and seriousunder-reporting, even in west-ern countries, has been docu-mented (Draper et al., 1993;Cook-Mozaffari et al., 1987).Geographical and temporal vari-ations are therefore particularlydifficult to interpret, due towide variations in diagnosticpractices and accuracy ofreporting. Improved registrationof cases in children over timemay be the basis of the increas-ing trends in incidence docu-mented since the early 1970s(Steliarova-Foucher et al., 2004,Adamson et al., 2005).

For these reasons, in thisworldwide overview we makeuse only of recent sources ofinformation on incidence andmortality and include only ratesbased on at least 200 cases. Inthe absence of direct measureswe rely on regional estimatesfrom the Globocan 2002 database

(www-dep.iarc.fr) and the WHOburden-of-diseases database(www3.who.int/whosis/).

Childhood malignant neo-plasms account for no morethan 2% of all cancers, yet theyare the second cause of death inchildren aged 5-14 in popula-tions where overall mortality islow. In affluent countries,about 6% of childhood deathsare due to cancer, twice theproportion due to infections(table 1). Where all-causes mor-tality is high, the relative imp-ortance of cancer is obscured bythe high mortality due to infec-tious, parasitic, pregnancy anddelivery complications; in thesecountries cancer is likely to beseriously under-reported. The

proportion taken by cancer inthe age range 5-14 years, ignor-ing those under five, is signifi-cantly higher everywhere,accounting for up to a quarterof all deaths in this age range insome countries (table1).

Incidence rates around1995 varied between 80 and150 new annual cases for every1,000,000 children (CIFC).Recorded rates are consistentlyabove 120 per 1,000,000 indeveloped countries (figure 1.1);

they appear high also in LatinAmerica, here represented byBrazil, Colombia, Costa Ricaand Ecuador. Rates appearlower in all Asia and Africa,with remarkable localisedexceptions. Uganda, where


CHAPTER 1The burden of childhood cancerPaola Pisani, Clarisse Hery

Country

Infectious and parasitic diseases

(ICD10: A00-B99)Age 0-14

Malignant neoplasms (ICD10: C00-C97)

Age 0-14 Age 5-14

United Kingdom, 2002 3.2 6.6 24.2

United States of America, 2000 2.3 3.8 13.7

Japan, 2002 3.3 5.9 17.5

Hungary, 2002 1.9 7.6 23.4

Poland, 2002 3.5 6.5 18.4

Philippines, 1998 18.9 2.0 5.4

Paraguay, 2000 15.7 3.1 14.7

Peru, 2000 8.4 2.6 8.7

Egypt, 2000 20.2 1.5 6.2

Table 1. Percentage of all deaths in age group (boys and girls) by cause in selectedcountries, November 2005. WHO Mortality Database (www.who.int/research/en/)

HIV infection is endemic,shows the highest recordedrates, and here 66% of child-hood tumours are representedby HIV-related non-Hodgkin’slymphomas and Kaposi’s sarco-ma. The variations describedare reflected in the worldwide

estimates shown separately bygender in figure 1.2. Higherrates are recorded in the moreaffluent regions, in LatinAmerica and the Caribbean,and in the south-east Africancountries where AIDS isendemic. This picture is in

marked contrast with the esti-mated risk of dying from cancershown in figure 1.3: mortality isactually lowest in the rich high-risk countries. This reflects thestriking inequalities in access tomodern effective treatment thatwill also be documented belowby some data on the survivalprobabilities of cancer patients.

The maps suggest a greaterrisk in boys compared to girls.Sex ratios reported by cancerregistries are shown in figure

1.4; rates in boys are onlyslightly greater than in girlswhere recorded incidence ishighest, e.g. developed coun-tries and Latin America.According to cancer registriesin Asia and Africa, by contrast,the risk in boys appears substan-tially greater than in girls. Thisis unlikely to reflect biologicaldifferences in susceptibility bysex. Rather it reflects unevenaccess for boys and girls to cen-tres specialised in cancer treat-ment; sick girls are less likelythan boys to reach specialist

10 Childhood Cancer. Rising to the challenge

0 20 40 60 80 100 120 140 160 180

Viet Nam

Thailand

India

Pakistan, South Karachi

Kuwaitis

Algeria, Algiers

China

Zimbabwe, Harare: African

Singapore

Philippines

Japan

Ecuador, Quito

Eastern Europe

Korea

Costa Rica

Israel

Colombia, Cali

Northern Europe

Western Europe

Southern Europe

North America

Australia & New Zealand

Brazil

Uganda, Kyadondo County

Rate/1,000,000

Latin America

Developed countries

Africa

Asia

Figure 1.1 Average annual incidence rates of all cancers per million children aged 0-14 years recorded by cancer registries (CIFC)

Figure 1.2 Worldwide age-standardised (ASR) incidence rates of cancer per million children

Incidence of all sites but skin: ASR (World)-Boys (age 0-14) Incidence of all sites but skin: ASR (World)-Girls (age 0-14)

care (Pearce and Parker, 2001).In Latin America, registries canrely on death certificates toidentify cases that are not foundin specialist centres; girls aretherefore identified at death,and the sex ratio is close to one.This source of information isgenerally not available in Africaand Asia.

Tumour typesMalignancies of thehaematopoietic system are thelargest subgroup of childhoodcancers, accounting for 30% to60% of all tumours (figure 1.5).They are followed by tumoursof the brain and nervous system(10% to 20%), bone (3% to

10%) and liver (1% to 3%).Two-thirds of lymphatic

malignancies in children areleukaemias, the majority ofwhich are acute lymphoblasticleukaemia (ALL), followed byacute myeloid leukaemia(AML). Chronic myeloidleukaemia is consistently rareeverywhere. Leukaemia occursmore often in under-fives, andthe incidence decreases withage. Lymphomas constitute20% to 30% of haematopoietictumours. Among them Burkitt’slymphoma deserves a specialmention. Burkitt’s lymphoma isa B-cell neoplasm occurring inchildren and young adultsthroughout the world. It is arare form of lymphoma exceptin Equatorial Africa, where thehigh incidence of this malig-nancy led to the identificationof an “endemic” form of thedisease, as opposed to the “spo-radic” form that occurs else-where. Virtually all endemicAfrican Burkitt’s lymphomasare associated with the Epstein-


0 0.2 0.4 0.6 0.8 1 1.2 1.4 1.6 1.8

Ecuador, Quito

Colombia, Cali

Costa Rica

North America

Eastern Europe

Japan

Southern Europe

Northern Eurrope


Singapore

China

Western Europe

Philippines

Korea

Thailand

Viet Nam


Israel

Brazil

Kuwait


India


Algeria, Algiers

Sex ratio

0 0.2 0.4 0.6 0.8 1 1.2 1.4 1.6 1.8

Figure 1.4 Cancer incidence sex ratio (boys:girls) in children aged 0-14 in selectedcountries and regions (CIFC)

Mortality from all sites but skin: ASR (World)-Boys (age 0-14) Mortality from all sites but skin: ASR (World)-Girls (age 0-14)

Figure 1.3 Worldwide age-standardised (ASR) mortality rates of cancer per million children

Barr virus (EBV): the viralgenome integrated in tumourcells can be detected in over90% of the cases, while onlyabout 20% of sporadic tumoursharbour the EBV genome.Though the causal role of EBVin African Burkitt’s lymphomais not questioned, it is also clearthat co-factors are needed tomake such an ubiquitous infec-tion as EBV actively carcino-genic. Immuno-suppressioncaused by malaria, HIV infec-tion or other conditions is the

main factor contributing to thedevelopment of EBV-associatedBurkitt’s lymphomas. Inimmuno-compromised chil-dren, EBV may also cause otherlymphoid tumours, such asHodgkin’s Disease and other B-and T-cell non-Hodgkin’s lym-phomas. Finally, EBV is also acause of carcinoma of thenasopharynx, a not so raretumour in South-East Asia andNorth Africa.

Tumours of the brain andcentral nervous system (CNS)

are the second most commontype of malignancy occurring inchildren (figure 1.5). Before theadvent of modern radiographicprocedures for the diagnosis ofintra-cranial tumours, the inci-dence of brain tumours wasunder-reported, and it contin-ues to be underestimated wheremodern technology is notwidely available. Again, thiscould account in part for thelower incidence observed inmost developing countries.Increases in CNS incidencehave been documented inNorth America (Linet et al.,1999) and Europe (Steliarova-Foucher et al., 2004). As withall other childhood cancers,controversy persists on theinterpretation of these observa-tions, which are certainly influ-enced by improvements indiagnosis and reporting butcould also indicate smallincreases in risk.

We don't know the causesof most cancers occurring inchildren.

Well-established causes ofchildhood malignancies are thealready-mentioned EBV and thehuman T-lymphotropic virusthat causes T-cell lymphoma/leukaemia, a rare subtype. It isalso well established that expo-sure to high doses of radiationcauses leukaemia and othertypes of cancer in humans.Children exposed in utero or inearly life are particularly suscep-tible to the carcinogenic effectof ionising radiation, which


0 20 40 60 80

North America

Northern Europe

Eastern Europe

Southern Europe

Western Europe


Algeria, Algiers



Colombia, Cali

Costa Rica

Ecuador, Quito

Brazil

Israel


Singapore

Korea

Japan

Kuwait

Thailand

Viet Nam

China

India

Philippines

Lymphoid andhaematopoietictissues

Lymphoid andhaematopoietictissues

Brain, centralnervous systemBrain, centralnervous system

BoneBone LiverLiver Kaposi’s

sarcoma

Kaposi’s

sarcoma

% of all

Figure 1.5 Relative frequencies of major tumour types in children aged 0-14 inselected populations (CIFC)

substantially increases the risk ofleukaemia and thyroid cancer,depending on the dosereceived. Nevertheless, themain sources of radiation expo-sure in children are diagnosticinvestigations that, with mod-ern technology, involve verylow doses. The expected effectsare comparably so low that theycan hardly be measured.

Many other environmentalfactors have been investigated aspossible causes of childhoodcancer, including parents’lifestyle (diet, alcohol andtobacco consumption), occupa-tional exposure to carcinogens,use of drugs and medicationduring pregnancy, and exposureto electromagnetic fields. Noclear evidence has been pro-duced for any of these factors.

Inheritance of genetic sus-ceptibility or spontaneousmutations may have greaterimportance in children, becauseof the rapid cell proliferationthat occurs at young ages.However, a genetic basis forthe most common types ofchildhood cancers has not beenestablished. A clear genetic aeti-ology has been established onlyfor retinoblastoma and Wilm'stumours. The risk of soft-tissuesarcoma and several other can-cers is also increased in thepresence of the Li-Fraumenisyndrome, a condition that isdefined by the aggregationwithin families of rare tumoursoccurring at unusual ages.

Childhood cancer survivalThe most striking feature of theepidemiology of childhood can-cer over the last two decades isthe continuing improvementand increasing efficacy of treat-ment. In the USA, 5-year sur-vival for all type of cancersincreased from 51% in 1973 to79% in 1997 (SEERb, 2005).Significant improvements inunselected series of cases havealso been documented inEurope and Japan (Steliarova etal., 2004; Gatta et al., 2002;Ajiki et al., 2004): 5-year sur-vival is now over 90% forHodgkin's Disease, 70% fornon-Hodgkin’s lymphoma and80% for Wilm’s tumours.Virtually all testis cancers aresuccessfully cured, and evenCNS tumours, a rather lethalform of malignancy in adults,show survival rates above 60%in population-based series ofcases (Steliarova et al., 2004;Gatta et al., 2002).

Direct measures of popula-tion-based survival probabilitiesof cancer patients in developingcountries are sparse - and littlerepresentative for childhoodpatients - and poorly describethe actual situation. This lack ofinformation reflects the slightattention given to this group ofdiseases when health-careresources are limited and otherdiseases are more serious pub-lic-health problems. The littleinformation available from can-

cer registries indicates that sur-vival of cancer patients in mostdeveloping countries is signifi-cantly poorer than in richcountries (Sankaranarayanan etal., 1998; Gondos et al., 2005,2004). In a large study conduct-ed recently in seven CentralAmerican countries, over 2,000children affected by all types ofmalignancies were followed upto assess 3-year survival(Valsecchi et al., 2004). Thecases were recruited in institutescollaborating with Europeancentres of excellence throughinternational programmes ofcooperation and therefore providing the best local care: 3-year survival was only 48%for all sites, and 62% for acutelymphoblastic leukaemia, withmarked variations across theseven countries. We can confi-dently predict an even worseclinical history for cases thatnever reached these centres.

Surviving children remainat increased risk of cancer andother diseases throughout theirlife and therefore require con-tinuing monitoring.


Adamson P, Law G, Roman E (2005) Assessment of trends in childhood cancer incidence. The Lancet

365:753.

Ajiki W, Tsukuma H, Oshima A (2004) Survival rates of childhood cancer patients in Osaka, Japan. Jpn J

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Cook-Mozaffari P, Ashwood FL, Vincent T, Forman D, Alderson M (1987) Cancer Incidence and Mortality

in the Vicinity of Nuclear Installations, England and Wales 1959-80. Studies on medical and population sub-jects no. 51. London: HMSO.

Draper GJ, Bower BD, Darby SC, Doll R (1993) Completeness of registration of childhood leukaemianear nuclear installations and elsewhere in the Oxford region. BMJ 299:952.

Ferlay J, Bray F, Pisani P, Parkin DM (2004) Globocan 2002: Cancer Incidence, Mortality and Prevalence

Worldwide. IARC CancerBase no. 5 version 2.0. Lyon: IARCPress.

Gatta G, Capocaccia R, Coleman MP, Gloeckler Ries LA, Berrino F (2002) Childhood cancer survivalin Europe and the United States. Cancer 95:1767-72.

Gondos A, Brenner H, Wabinga H, Parkin DM (2005) Cancer survival in Kampala, Uganda. Br J Cancer

92:1808-9.

Gondos A, Chokunonga E, Brenner H, Parkin DM, Sankila R, Borok MZ, Chirenje ZM, NyakabauAM, Bassett MT (2004) Cancer survival in a Southern African urban population. Int J Cancer 112:860-4.

Linet MS, Ries LA, Smith MA, Tarone RE, Devesa SS (1999) Cancer surveillance series: recent trends inchildhood cancer incidence and mortality in the United States. J Natl Cancer Inst 91:1051-8.

Parkin DM, Stiller CA, Draper GJ, Bieber CA (1988) The international incidence of childhood cancer.Int J Cancer 42:511-20.

Parkin DM, Whelan SL, Ferlay J, Teppo L, Thomas DB (eds.) (2004) Cancer Incidence in Five Continents,vol. VIII. IARC Scientific Publication no. 155. Lyon: IARCPress.

Pearce MS, Parker L (2001) Childhood cancer registrations in the developing world: still more boys thangirls. Int J Cancer 91:402-6.

Sankaranarayanan R, Black RJ, Parkin DM (1998) Cancer Survival in Developing Countries. IARC ScientificPublication no. 145. Lyon: IARCPress.

SEERb (2005) Surveillance, Epidemiology, and End Results (SEER) Programme (www.seer.cancer.gov)SEER*Stat Database: Incidence - SEER 9 Regs Public-Use, Nov 2004 Sub (1973-2002), NationalCancer Institute, DCCPS, Surveillance Research Programme, Cancer Statistics Branch, released April2005, based on the November 2004 submission.

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Valsecchi MG, Tognoni G, Bonilla M, Moreno N, Baez F, Pacheco C, Hernandez AP, Antillon-Klussmann F, Machin S, Cabanas R, Navarrete M, Nieves R, De Lorenzo P, Masera G (2004) Clinicalepidemiology of childhood cancer in Central America and Caribbean countries. Annals of Oncology

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References

In this chapter we describeexisting information on theoccurrence of cancer in the

10 countries initially selectedfor projects in the My ChildMatters initiative. We try to putthese scanty data in context,using selected measures of pop-ulation health and nationalhealth accounts as estimated byWHO around 2002 (table 2)

(www3.who.int/whosis/). Cancer registries are our

privileged source of informationon cancer incidence, since theycover a clearly defined popula-tion. The last volume of Cancer

Incidence in Five Continents

(CIFC) includes only goodquality population-based data(Parkin et al., 2004). Data quality was also reviewed in thetwo volumes of the International

Incidence of Childhood Cancer

(IICC-1 and IICC–2), whichinclude both population-basedand selected series of cases(Parkin et al., 1988; Parkin etal., 1998). Another source ofinformation was the monographCancer in Africa (CIA) (Parkin etal., 2003).

The population-based datapublished in CIFC, IICC-1 andIICC-2 were used preferentiallythroughout this chapter. In the

absence of such information,we used large hospital or histo-pathology case series includedin the IICC volumes ordescribed in the scientific litera-ture or in published reports.Hospital sources are not idealbecause the admitted patientsare not representative of thewhole population. For example,they may attract patients withspecific tumour types, whichtherefore appear more com-mon. The bias is even moreserious in histopathology series,since some tumours, such asthose of the brain, are rarelyconfirmed by histology.


CountriesPopulation(thousands)

% popula-tion age <15

years

Life-expectancy

Under-5 child mortality per1,000*

boys girls

Immunisationcoverage**

HepB3 polio

%of childrenunder 5below median

weight/age

Total percapita healthexpenditure

US$

Public percapita healthexpenditure

US$

Bangladesh 146,736 37.6 63 68 70 83 49.7 11 3

Egypt 71,931 34.5 67 39 40 79 96 8.6 59 21

Honduras 6,941 39.7 67 42 40 91 16.6 60 31

Morocco 30,566 31.3 71 40 38 95 10.2 55 18

Philippines 79,999 35.9 68 39 33 80 34.2 28 11

Senegal 10,095 42.4 56 142 132 58 22.7 27 12

Tanzania 36,977 44.5 45 176 153 80 29.4 13 7

Ukraine 48,523 16.7 67 23 18 99* 3.2 40 29

Venezuela 25,699 32.4 74 24 19 40 4.4 184 86

Viet Nam 81,377 31.3 71 26 20 76 33.8 23 7

Table 2. Summary indicators of population health and per capita expenditure around 2002 by country (WHO)

*Official country estimates **Percent of target population vaccinated, by antigen. Last coverage survey

CHAPTER 2The 10 My Child MattersTM countriesEva Steliarova-Foucher, Clarisse Hery, Paola Pisani

To provide estimates ofcancer incidence for countrieswith no available sources, weused information from othercountries in the same region byreferring to the national esti-mates of Globocan 2002 (Ferlay

et al., 2004) or the area average. We tried to estimate fre-

quency distributions of cancersubtypes as a percentage of allsites. Population-based registrydata were available for Egypt,the Philippines and Vietnam.

Incidence rates for Bangladesh,Tanzania, Venezuela andMorocco are derived from theIICC volumes. No rates couldbe estimated for Honduras,Senegal or Ukraine.


Ferlay J, Bray F, Pisani P, and Parkin DM (2004) Globocan 2002: Cancer Incidence, Mortality and Prevalence

Worldwide. IARC CancerBase no. 5 version 2.0. Lyon: IARCPress. “Globocan” in figures 2.1-20.

Parkin DM, Ferlay J, Hamdi-Cherif M, Sitas F, Thomas JO, Wabinga H, Whelan SL (eds.) (2003) Cancer

in Africa: Epidemiology and Prevention. IARC Scientific Publications no. 153. Lyon: IARCPress. “CIA” in

figures 2.1-20.

Parkin DM, Whelan SL, Ferlay J, Teppo L, Thomas DB (eds.) (2004) Cancer Incidence in Five Continents,vol. 8. IARC Scientific Publication no. 155. Lyon: IARCPress. “CIFC” in figures 2.1-20.

Parkin DM, Stiller CA, Draper GJ, Terracini B, Young JL (eds.) (1988) International Incidence of Childhood

Cancer. IARC Scientific Publications No. 87. Lyon: International Agency for Research on Cancer.

Parkin DM, Kramárová E, Draper GJ, Masuyer E, Michaelis J, Neglia J, Qureshi S, Stiller CA (eds.)(1998) International Incidence of Childhood Cancer vol. 2. IARC Scientific Publications no. 144. Lyon:International Agency for Research on Cancer. “IICC-2” in figures 2.1-20.

Bangladesh wasestablished as anindependentcountry in 1971.

The total population is 147million, 37% of whom are chil-dren under 15 (table 2). Currentlife expectancy at birth is 63years, 50% of children underfive are undernourished, andchild mortality is about 69 per1,000. Total per capita healthexpenditure is the lowestamong the 10 selected coun-tries.

The massive exposure ofthe population to arsenic due tonatural contamination of drink-ing water has been documentedsince the 1970s and is a major

public health problem. Arsenicis a carcinogen, causing cancerof the skin and lung and possi-bly liver, bladder and kidney(IARC, 1987; Khan et al.,2003; Alam et al., 2002). Theimpact of arsenic exposure onthe incidence of cancer in chil-dren has never been evaluated.

Primary health care andhospital treatment are providedfree of charge. There is no spe-cialist hospital for the manage-ment of childhood cancer, butthere are four radiotherapydepartments. The pathologyservices are seriously short ofresources, and diagnoses aretherefore rarely confirmed byhistology. Patients are not rou-

tinely followed up (Rahim etal., 1998). Population-baseddata on childhood cancer arenot available, and annual inci-dence rates of new cases aretherefore unknown. Birth anddeath population registers arenot properly maintained.

In figure 2.2, Bangladesh isrepresented by the data collect-ed at the Cancer EpidemiologyResearch Programme (CERP),a non-governmental and non-profit private organisation fund-ed by public contributions(Rahim et al., 1998). Thistumour registry, in operationsince 1972, collects data fromradiotherapy departments in theMedical College Hospitals of

Bangladesh

References

Dhaka (the capital city),Chittagong (the second city andcommercial capital), Barisal,Rajshahi and Sylhet, coveringthe populations of four districtsand the urban population ofDhaka. Notification to the reg-istry by the radiotherapy centresis only voluntary; incomplete-ness is thus unavoidable.Leukaemia and central nervoussystem (CNS) tumours, oftenmanaged in departments ofinternal medicine, are likely tobe under-reported. Retino-blastoma and bone tumours,

usually diagnosed at advancedstages when surgery becomesimpossible, are referred toradiotherapy units for palliativetreatment. If we consider regis-tration of retinoblastoma closeto complete, and assuming thatretinoblastoma is as common asin Indian children, the overallrate of cancer incidence inBangladeshi children can beestimated at 82.1 per million.This is comparable with therates of all new cases per mil-lion registered annually inneighbouring India, represented

by Bombay (77.4 per million,Jussawalla et al., 1998) andMadras (84.2 per million,Shanta et al., 1998) but mayunderestimate true rates.

There is a deficit of regis-tered cases among childrenunder one, possibly because thespecific cause of death goesunrecognised in a context ofvery high infant mortality.Under-ascertainment of cancerin girls has also been noted(Rahim et al., 1998).


Alam MG, Allinson G, Stagnitti F, Tanaka A, Westbrooke M (2002) Arsenic contamination in Bangladeshgroundwater: a major environmental and social disaster. Int J Environ Health Res (Sep 2002) 12(3):235-53.

Begum RA (1999) A review of the reproductive health situation in Bangladesh. J Prev Soc Med (Jun 1999)18(1):66-73.

Farrand P, Rowe RM, Johnston A, Murdoch H (2001) Prevalence, age of onset and demographic relation-ships of different areca nut habits amongst children in Tower Hamlets, London. Br Dent J (10 Feb 2001)190(3):150-4.

Haque T, Iliadou P, Hossain A, Crawford DH (1996) Seroepidemiological study of Epstein-Barr virus infec-tion in Bangladesh. J Med Virol (Jan 1996) 48(1):17-21.

IARC (1987) Overall Evaluations of Carcinogenicity: An updating of IARC Monographs volumes 1 to 42. IARCMonographs on the Evaluation of Carcinogenic Risks to Humans. Supplement no. 7. Lyon: IARC.

Jussawalla DJ, Yeole BB, Natekar MV (1998) India, Bombay Cancer Registry, 1980-1992. IICC-2, pp. 161-164.

References

0 50 100 150 200

Data sources:

Crude rate per million

IICC-2India (2 registries)

GlobocanSouth Central Asia

CIFCSouth Central Asia

0

10

20

30

40

50

Leuk

aemia

Lymph

omas

CNS

tumou

rs

Neuro

blasto

ma

Retin

oblas

toma

Wilm

s tum

or

Other

Percentage

Bangladesh, CERPIndia, 2 registries

Figure 2.1 Expected incidence of childhood cancer in Bangladesh.The Indian figure is the weighted average of the rates registered inBombay (Jussawalla et al., 1998) and Madras (Shanta et al., 1998)

Figure 2.2 Relative frequencies of tumour subtypes registered inBangladesh, CERP (Rahim et al., 1998) and in two Indian popula-tion-based cancer registries (Bombay: Jussawalla et al., 1998; andMadras: Shanta et al., 1998)

This ancientcountry has apopulation of 72million (predom-

inantly native peoples), 33% ofwhom are children under 15.Life expectancy at birth is 67years, child mortality is moder-ately high (40 per 1,000), andthe proportion of underweightchildren is very low (table 2).

The regional cancer reg-istry of Alexandria, initiated by

the Alexandria Faculty ofMedicine in 1960, providescancer incidence data for achildhood population of 1.3million (Bedwani et al., 1998).Collected data include clinicallyor histopathologically con-firmed cases. The diagnosis ofleukaemias is based on periph-eral blood analysis and bonemarrow findings. The overallestimate of 101 cancers per mil-lion children is consistent with

the regional averages (figure

2.3). However, several observa-tions suggest under-reporting:the high sex ratio of 1.5, andwide fluctuations in the numberof recorded cases by year, indi-cating discontinuity in record-ing. Definitive evidence thatthe risk of cancer in children ofthis country is greater than esti-mated comes from the popula-tion-based registry of Gharbiah,Tanta, established around 2000


Khan MM, Sakauchi F, Sonoda T, Washio M, Mori M (2003) Magnitude of arsenic toxicity in tube-welldrinking water in Bangladesh and its adverse effects on human health including cancer: evidence from areview of the literature. Asian Pac J Cancer Prev (Jan-Mar 2003) 4(1):7-14.


in Africa: Epidemiology and Prevention. IARC Scientific Publications no. 153, p. 31. Lyon: IARCPress.

Rahim MA, Alam AMMS, Chwdhury QZ, Alam MM, Chowdhury FA, Baki MO (1998) Bangladesh,Cancer Epidemiology Research Program, 1982-1992. IICC-2, pp. 145-148.

Rahman MM, Chowdhury UK, Mukherjee SC, Mondal BK, Paul K, Lodh D, Biswas BK, Chanda CR, BasuGK, Saha KC, Roy S, Das R, Palit SK, Quamruzzaman Q, Chakraborti D (2001) Chronic arsenic toxicity inBangladesh and West Bengal, India - a review and commentary. J Toxicol Clin Toxicol 39(7):683-700.

Shanta MA, Gajalakshmi CK, Swaminatham R (1998) India, Madras Metropolitan Tumour Registry, 1982-1992. IICC-2, pp. 169-171.

Stiller CA (1994) International variations in the incidence of childhood carcinomas. Cancer Epidemiol

Biomarkers Prev (Jun 1994) 3(4):305-10.

Egypt

0 50 100 150 200

Data sources:


IICC-2Egypt (Alexandria)

GlobocanNorthern Africa

CIFCNorthern Africa

0

10

20

30

40

50

Leuk

aemia

Lymph

omas

CNS

tumou

rs

Neuro

blasto

ma

Retin

oblas

toma

Wilm

s tum

or

Other

Percentage

Egypt, AlexandriaAlgeria, 4 registries

Figure 2.3 Crude incidence rate of childhood cancer in Egypt,Alexandria (Bedwani et al., 1998), compared to crude rates esti-mated for Northern Africa

Figure 2.4 Relative frequencies of tumour subtypes registered inEgypt, Alexandria (Bedwani et al., 1998) and four Algerian reg-istries, Algiers, Constantine, Oran, Setif (CIA)

Honduras is asmall country inCentral Americawith a popula-

tion of 7 million, 40% of whomare children under 15.Ethnically, it is mostly mestizo(mixed Amerindian andEuropean, 90%) andAmerindian (7%). The infant

mortality rate is moderatelyhigh, and 17% of childrenunder five are underweight.Honduras is one of the poorestcountries of Latin America(table 2).

The cancer registry of SanPedro Sula has been activesince 1989. It covers a popula-tion of 1.3 million but reported

only 26 childhood cases in twoyears of observation around1990. This is far too small asample for even a tentativeinference.

Therefore, incidence ratesfrom the registries of CostaRica and Cali, Colombia wereaveraged to obtain a rate of 130per million, in agreement with


under the responsibility of theNational Cancer Institute inCairo. Unpublished preliminaryanalyses of the incidence data inthe period 1999-2001 indicatethat incidence may be 30%greater than that shown in figure

2.3 (personal communication). In contrast with the gener-

al pattern of tumour subtypes,lymphoma cases appear more

common than leukaemia. Thisobservation is confirmed by theAlgerian registry data (figure 2.4)

and by the Gharbiah registry(personal communication). Aclear deficit of retinoblastoma inthe Alexandria data was noted,since this tumour is five timesmore common in most NorthAfrican case series (Alaoui, 1988;CIA).

Based on the age-standard-ised rate of the AlexandriaCancer Registry (ASR=101 permillion), we would expect2,700 new cases of childhoodcancer per year in the wholecountry. If the higher rates ofthe Gharbiah registry are con-firmed, the incidence would be3,500 new cases per year.

References

Honduras

Alaoui FM (1988) Morocco, Rabat: Hospital for Children, 1983-1985. IICC-1, pp. 33-35.

Anonymous (1994) 1,370 mothers reported killed during physiological duty. Thousands more seriouslyinjured. Safe Mother (Mar-Jun 1994) 14:1-2.

Bedwani RN, Zaki A, Abuseif HH, Khewesky FS, El-Shazly M, Abdel-Fattah M, Bassili A (1998)Alexandria Regional Cancer Registry, 1980–1989. IICC-2, pp. 27-29.

0 50 100 150 200

Data sources:


IICC-2Costa Rica

GlobocanCentral America

CIFCCentral America 0

10

20

30

40

50

Leuk

aemia

Lymph

omas

CNS

tumou

rs

Neur

oblas

toma

Retin

oblas

toma

Wilm

s tum

or

Other

Percentage

Colombia and Costa Rica

Figure 2.5 Crude rate of childhood cancer incidence in Costa Rica(Rodríguez et al., 1998) and in Central America as estimates ofcrude rates expected in Honduras

Figure 2.6 Relative frequencies of tumour subtypes as averageof cases registered in Costa Rica (Rodríguez et al., 1998) andColombia, Cali (Carrascal and Collazos, 1998), showing theexpected pattern of childhood cancer types in Honduras

the regional average (figure 2.5).Applying the regional

average to the population ofHonduras, 380 new childhood

cancer cases per year may beexpected in the country.

According to the referencecountries, leukaemia is twice as

common as lymphoma and theleukaemia rates are among thehighest in the world (figure 2.6).


Carrascal E, Collazos T (1998) Colombia, Cali Cancer Registry, 1982-1991. IICC-2, pp. 71-74.

Rodríguez AC, Bratti C, Muñoz G, Herrero R, Balmaceda I (1998) Costa Rica, Costa Rica NationalTumour Registry, 1984-1992. IICC-2, pp. 75-77.

Reference

MoroccoMorocco becameindependentfrom France in1956. Of the

population of 30.5 million, 31%are children. Child mortalityrates are 40 per 1,000 in boysand 38 per 1,000 in girls, and10% of children under five areunderweight. Life expectancy atbirth is 71 years (table 2).

There is no population-based cancer registry inMorocco. A series of 444 casesof childhood cancer, admittedto the Hospital for Children inRabat during 1983-85, wasreported in the IICC-1 interna-

tional study (Alaoui, 1988).This series excluded childrenrequiring neurosurgery, whowere not treated in this hospi-tal. The most commonlyrecorded childhood cancerswere lymphomas (33%) - ofwhich 20% were Burkitt’s lym-phoma - leukaemia (23%), andWilm’s tumours (10%). Nocases of Kaposi's sarcomaoccurred in this series, thoughthe Maghreb is part of theMediterranean region, an areaendemic for classical Kaposi'ssarcoma, a form not linked toHIV infection (Hbid et al.,2005) (figure 2.8). In North

Africa, some childhood carci-nomas are more common thanelsewhere (Stiller, 1994),notably nasopharyngeal andskin carcinoma (Moussaid et al.,2004). Using the figures in CIA

for Algeria (figure 2.7) and theassumptions described in thesection on Egypt, we mayexpect a minimum of 1,105new childhood cancer cases peryear in Morocco.

Africa is the least devel-oped continent in oncologyresources, including those forchildren. Although the situationin Morocco is improving, careinfrastructures are still inade-

0 50 100 150 200

Data sources:


CIAAlgeria (4 registries)

GlobocanNorthern Africa

CIFCNorthern Africa 0

10

20

30

40

50

Leuk

aemia

Lymph

omas

CNS

tumou

rs

Neuro

blasto

ma

Retin

oblas

toma

Wilm

s tum

or

Other

Percentage

MoroccoAlgeria, 4 registries

Figure 2.7 Crude rate of childhood cancer incidence in Algeria (4registries) and crude incidence rates for North Africa as estimatesof incidence in Morocco

Figure 2.8 Relative frequencies of tumour subtypes registered inMorocco, Rabat (Alaoui, 1988) and in four Algerian registries(CIA: Algiers, Constantine, Oran, Setif)

quate to cope with demand.Radiotherapy and pain manage-ment for childhood cancerpatients are particularly insuffi-

cient (Levin et al., 1999;McCarthy et al., 2004). Settingup a population-based cancerregistry would help to evaluate

the extent of the problem andimprove the efficiency of healthinterventions (Amarti et al.,2001).


Alaoui FM (1988) Morocco, Rabat: Hospital for Children, 1983-1985. IICC-1, pp. 33-35.

Amarti A, Ottmani S, Maher M, Bernoussi Z, Khamlichi A, Saidi A (2001) Central nervous systemtumours in Morocco. Retrospective analysis of 2,374 cases. J Neurosurg Sci (Sep 2001) 45(3):163-70.

Hbid O, Belloul L, Fajali N, Ismaili N, Duprez R, Tanguy M, Benomar H, Tahri el H, Gessain A,Huerre M (2005) Kaposi's sarcoma in Morocco: a pathological study with immunostaining for humanherpesvirus-8 LNA-1. Pathology (Aug 2005) 37(4):288-95.

Levin CV, El Gueddari B, Meghzifene A (1999) Radiation therapy in Africa: distribution and equipment.Radiother Oncol (Jul 1999) 52(1):79-84.

McCarthy P, Chammas G, Wilimas J, Alaoui FM, Harif M (2004) Managing children's cancer pain inMorocco. J Nurs Scholarsh 36(1):11-5.

Moussaid L, Benchikhi H, Boukind EH, Sqalli S, Mouaki N, Kadiri F, Lakhdar H (2004) Cutaneoustumours during xeroderma pigmentosum in Morocco: study of 120 patients. Ann Dermatol Venereol (Jan2004) 131(1 Pt 1):29-33.


in Africa: Epidemiology and Prevention. IARC Scientific Publications no. 153, p. 31. Lyon: IARCPress.

Stiller CA (1994) International variations in the incidence of childhood carcinomas. Cancer Epidemiol

Biomarkers Prev (Jun 1994) 3(4):305-10.

References

PhilippinesThe Philippinesspread out over300,000 km2 onan archipelago of

7,107 islands between thePhilippine Sea and the SouthChina Sea. The islands aredensely populated by over 80million people of various nativeethnic groups. Life expectancyis 68 years. Children under 15form 36% of the population.Child mortality is moderatelyhigh and a relatively high pro-portion of small children areunder the recommendedweight standards (table 2).

The National Capitalregion, which includes the met-ropolitan area of Manila andpart of the surroundingprovinces, hosts 15% of thepopulation and has the highestconcentration of health services.These include 168 secondaryand tertiary hospitals, 43 pri-mary hospitals, 32 Departmentof Health outpatient clinics, andscores of private clinics in met-ropolitan Manila and Rizalprovince. There are nine radio-therapy centres, three of themin government hospitals. Thereis no government cancer insti-

tute, but there are two compre-hensive oncology departmentsand three children’s hospitals,two public and one private. In1998, 7 out of 13 paediatricsurgeons and 6 out of 9 paedi-atric oncologists in thePhilippines were in metropoli-tan Manila (Laudico et al.,1998).

Cancer incidence data forthe Philippines are derived fromthe two population-based can-cer registries in the country:Rizal and Manila (Laudico etal., 1998), which combinedcover about 14% of the child-

hood population. Since 1984the two registries have workedclosely together, sharing a com-mon data set and cross-notify-ing cases from their respectivecatchment areas. Death certifi-cates are also a source of caseidentification for the two reg-istries. In fact, the high percent-

age of cases registered fromdeath certificates only (20%)may indicate under-reporting, ifsome deaths due to cancer arenot certified.

Around 1995 the two reg-istries recorded a crude rate of103 annual new cases per mil-lion children (figure 2.9), which

allows us to predict a minimumof 3,500 new cases in 2006.Leukaemia accounts for almost50% of the total incidence (fig-ure 2.10). Lymphoma appearsunusually low (less than 10%),but in agreement with otherregistries in South-East Asia.


0 50 100 150 200

Data sources:


IICC-2Philippines (Manila, Rizal)

GlobocanSouth Eastern Asia

CIFCSouth Eastern Asia 0

10

20

30

40

50

Leuk

aemia

Lymph

omas

CNS

tumou

rs

Neuro

blasto

ma

Retin

oblas

toma

Wilm

s tum

or

Other

Percentage

Philippines (Manila, Rizal)

Figure 2.9 Crude rate of childhood cancer incidence in thePhilippines, Manila and Rizal (Laudico et al., 1998) compared tothe crude incidence rates estimated for South-East Asia

Figure 2.10 Relative frequencies of tumour subtypes registered inPhilippines, Manila and Rizal (Laudico et al., 1998)

ReferenceLaudico AV, Esteban DB, Tabafunda TM (1998) Philippines, Manila and Rizal Cancer Registry, 1983-1992. IICC-2, pp. 211-215.

SenegalSenegal, estab-lished in 1960, isa mainly low-lying country in

West Africa, with semi-desertareas in the north and north-eastand forests in the south-west.The country is inhabited by 10million people, 42% of whomare children. Immunisation cov-erage, as represented by poly-omielitis, is only 58%, and lifeexpectancy at birth is 56 years(table 2).

Infectious diseases are themain health problem in thecountry, where malaria, bacteri-al and protozoal diarrhoea, hep-atitis A, typhoid, and dengueand yellow fever are common.The prevalence of HIV infec-tion is 0.8%.

A cancer registry is inoperation but has not producedany incidence statistics yet. In aretrospective survey carried outin the Royal Albert Children’sHospital of Dakar for the 10-

year period 1989-1998, 25 casesof haematopoietic neoplasmswere diagnosed among 32,789children hospitalised, with a sexratio of 2.57 (18 boys, 7 girls).There were 9 cases of acutelymphoblastic leukaemia, 2 ofacute myeloblastic leukaemia, 2of chronic myeloid leukaemia,9 of Hodgkin's disease, 2 ofBurkitt’s lymphoma and 1 oflymphoblastic non-Hodgkinlymphoma. The mean durationbetween the first clinical symp-

toms and the diagnosis of thedisease was four months.Diagnosis was delayed, mainlydue to the transfer from periph-eral health services to hospitals.Among 19 patients whoserecords were available, 17received chemotherapy.However, reference protocolswere fully applied only in twocases (1 Hodgkin’s disease, 1lymphoblastic lymphoma).Transfusion management wasinsufficient because of the lackof blood-derived products atthe time of therapy. Thirteenpatients died during follow-up.Mean survival after first hospi-talisation in these cases was 120days for acute lymphoblasticleukaemia, 38 days for acutemyeloblastic leukaemia, 2.5years for Hodgkin's disease and18 months for non-Hodgkinlymphoma. The other sixpatients were lost to follow-upand probably died at home(Diagne et al., 2002).

In another retrospectivehospital-based study at the

Principal Hospital in Dakar,130 children with cancer wereidentified among all admissionsin the period 1990-2000. Thefive most frequent cancer typesaccounted for 75% of cases,with 28 leukaemias, 21 lym-phomas, 21 nephroblastomas,16 retinoblastomas, and 10bone sarcomas. In these 130children, there were 20% moreboys than girls. The mean delayfor admission was threemonths. Treatment was com-pleted in 18% of cases. The bestsurvival was observed fornephroblastoma patients (Ka etal., 2003).

In the neurology depart-ment of the University Hospitalin Dakar, 10% of childrenadmitted presented with a braintumour, according to a retro-spective survey 1980-1997(Ndiaye et al., 1999).

The overall incidence rateof childhood cancer in Senegalprobably varies around thoseshown in figure 2.11 for WestAfrica, derived from various

sources (CIA). The distributionof cases according to tumoursubtype is shown in figure 2.12.Lymphomas represent 33% ofall tumours and, as in EastAfrica, are significantly morecommon than leukaemias. Incontrast, Kaposi’s sarcoma isvery rare (compare figure 2.14).

There are no specialisedcentres for paediatric oncology.Leukaemias and lymphomas arelargely fatal. This poor progno-sis is a consequence of latediagnosis and insufficient thera-peutic management of childrenin the referral hospitals (Ka etal., 2003).

The creation of specialiseddepartments would help toimprove the prognosis throughoptimal use of available humanand material resources.Improvement of knowledge inthe peripheral health servicescould contribute to reducingdelays in treatment.


0 50 100 150 200

Data sources:


Cancer in AfricaWestern Africa

GlobocanWestern Africa

CIFCWestern Africa

0

10

20

30

40

50

Leuk

aemia

Lymph

omas

NS tu

mours

Retin

oblas

toma

Wilm

s tum

or

Kapo

si sa

rcoma

Other

Percentage

Western Africa

Figure 2.11 Estimates of average crude rate of childhood cancerincidence in West Africa according to three sources, giving thelikely range of incidence in Senegal

Figure 2.12 Average relative frequencies of tumour subtypes inWest Africa; pooled estimate of various sources (CIA, IICC-2)showing the expected pattern in Senegal. Nervous system (NS)tumours include CNS tumours and neuroblastoma

ReferencesDiagne I, Diagne-Gueye NR, Gaye-Ly K, Sow D, Camara B, Diack-Mbaye A, Signate-Sy H, Ba M, Sarr M,Moreira C, Kuakuvi N (2002) Management problems of malignant hemopathies among children in Senegal.Dakar Med 47(1):12-7.

Ka AS, Imbert P, Moreira C, Niang A, Baujat G, Seye MN, Guyon P (2003) Epidemiology and prognosis ofchildhood cancers in Dakar, Senegal. Med Trop (mars 2003) 63(4-5):521-6.

Ndiaye M, Sene-Diouf F, Diop AG, Ndao AK, Ndiaye MM, Ndiaye IP (1999) Neuropediatrics: epidemiolog-ical features and etiologies at the Dakar neurology service. Dakar Med 44(2):162-5.

Parkin DM, Ferlay J, Hamdi-Cherif M, Sitas F, Thomas JO, Wabinga H, Whelan SL (eds.) (2003) Cancer in

Africa: Epidemiology and Prevention. IARC Scientific Publications no. 153, p. 31. Lyon: IARCPress.

Tuyns AJ, Quenum C (1982) Senegal, Dakar. In Cancer Incidence in Five Continents, vol. 4. Waterhouse J, MuirCS, Shanmugaratnam K, Powell J (eds.). IARC Scientific Publications no. 42. Lyon, IARC, pp. 210-213.

TanzaniaTanzania, creat-ed in 1964, cov-ers 945,087 km2.The population

is 37 million, growing by 1.8%per year; 45% are childrenunder 15, with 30% of theseunder the median recommend-ed weight. The mortality rateunder five is 176 per 1,000 forboys and 153 per 1,000 forgirls, the highest among the 10countries selected. Lifeexpectancy at birth is 45 years,

the lowest among the 10 coun-tries (table 2).

The Ocean Road CancerCentre (ORCI) in Dar esSalaam is the main referral hos-pital for cancer patients for thewhole country (Schneppen,2000). The Muhimbili NationalCentre, a teaching hospital inDar es Salaam, also receivescases from the central andsouthern regions, and theKilimanjaro Christian MedicalCentre in Moshi serves the

north-west. Cases are also treat-ed in general district hospitals.In the late 1960s a histopathol-ogy registry was established inthe Muhimbili National Centreto collect data from several lab-oratories; in the 1980s this wasexpanded to include all casesdiagnosed or treated in the hos-pital. A registry is also main-tained at the KilimanjaroChristian Medical Centre. Bothregistries are being expanded tocover the population of a

0 50 100 150 200

Data sources:


IICC-2Uganda, Kampala

GlobocanEastern Africa

CIFCEastern Africa 0

10

20

30

40

50

Leuk

aemia

Lymph

omas

NS tu

mours

Retin

oblas

toma

Wilm

s tum

or

Kapo

si sa

rcoma

Other

Percentage

Tanzania, case seriesUganda, Kampala

Figure 2.13 Crude incidence rate of childhood cancer incidence inUganda, Kampala (Wabinga et al., 1998) and estimates for EastAfrica as indicative of the incidence in Tanzania

Figure 2.14 Relative frequencies of tumour subtypes histological-ly confirmed registered in Muhumbili Medical Centre in Dar EsSalaam, Tanzania, 1973-1995 (Carneiro et al., 1998), comparedto the Kampala registry, Uganda, 1992-1995 (Wabinga et al.,1998)


defined area. The ORCI centrehas recently taken responsibilityfor coordinating surveillancesystems that are being set up indifferent provinces. There is nospecialised paediatric oncologyand no systematic patient fol-low-up; we may infer thatprognosis in most cases is poor,since patients generally presentat an advanced stage (Amir etal., 1994).

Descriptive data on theoccurrence of cancer based onthe histopathology series

described above have beenpublished (Shaba, 1988;Carneiro et al., 1998; Mgayaand Kitinya, 2000). Availabledata show that 45% of all casesaround 1980 were lymphoma,half of them Burkitt’s lym-phoma (figure 2.14). The secondlargest group was Kaposi's sar-coma (10%). Leukaemia andbrain tumours were very rare,but this probably reflects under-ascertainment. The high fre-quency of lymphoma andKaposi's sarcoma (figures 2.13,

2.14) is compatible with thehigh prevalence of HIV infec-tion, which affects 26% of thepopulation. NeighbouringUganda has a good population-based registry and presents simi-lar characteristics. Based onrates from the Kampala registry(Wabinga et al., 1998), wewould expect 3,000 new child-hood cases per year inTanzania. About one-third ofthese cases would be Kaposi'ssarcoma, and one-fifth,Burkitt’s lymphoma.


Ukraine

Amir H, Shibata HR, Kitinya JN, Kwesigabo G (1994) HIV-1 associated Kaposi's sarcoma in an Africanpopulation. Can J Oncol (Nov 1994) 4(4):302-6.

Carneiro PM, Kalokola FM, Kaaya EE (1998) Paediatric malignancies in Tanzania. East Afr Med J (Sep1998) 75(9):533-5.

Mgaya EM, Kitinya JN (2000) Histopathology of malignant tumours of childhood in Tanzania. East Afr

Med J (Aug 2000) 77(8):435-9.

Schneppen H (2000) Early days of the Ocean Road Hospital in Dar es Salaam: from mission hospital togovernment hospital. Sudhoffs Arch Z Wissenschaftsgesch 84(1):63-88.

Shaba J (1988) Tanzania Cancer Registry, 1980-1981. IICC-1, pp. 49-51.

Wabinga HR, Owor R, Nambooze S (1998) Uganda, The Kampala Cancer Registry, 1992-1995. IICC-

2, pp. 53-55.

Ukraine, inEastern Europe,is the second-largest European

country (603,700 km2). Itbecame independent in 1991,after its separation from the for-mer Soviet Union. The child-hood population is about 17%of 48.5 million people, with alife expectancy of 67 years at

birth. Child mortality is thelowest among the 10 countriesexamined, and only 3.2% ofchildren are undernourished(table 2).

The average mortality ratefrom cancer in children under15 around 2000 was 64 permillion in boys and 51 per mil-lion in girls, twice the ratesrecorded in England and Wales

in the same period (www-

dep.IARC.fr). Whether the sig-nificantly greater mortality isdue to higher incidence orpoorer prognosis is impossibleto tell, since there is no moni-toring system for cancer inci-dence. Registries in neighbour-ing countries (Poland, Russia,Slovakia and Belarus) report anaverage incidence rate of 135

References

new cases per million childrenper year around 1995 (figure

2.15). Applying this rate to theUkrainian population leads toan estimate of 1,120 cases ofchildhood cancer per year, ofwhich 28% would beleukaemia. The neighbouringregistries show similar patternsby cancer subtypes, with theexception of a high incidenceof thyroid cancer in Belarus,where it accounts for 17% of allchildhood cases (figure 2.16).

Ukraine and Belarus weremost affected by the conse-quences of the Chernobylnuclear accident in April 1986.

The thyroid gland is particularlyradio-sensitive in children, anda significant excess of thyroidcancers in children resident incontaminated areas was docu-mented in Ukraine five yearsafter the accident (Prisyazhiuket al., 1991; Tronko et al.,1999). The excess was laterconfirmed in a study of exposedchildren in Belarus and Russiaduring the 10 years followingthe accident (Williams, 2002).The impact has not been prop-erly investigated (Hatch et al.,2005). A recent report (TheChernobyl Forum, 2005)1 esti-mates that 4,000 cases of thy-

roid carcinoma occurred as adirect consequence of theChernobyl accident. Most ofthese tumours affected residentswho were children or adoles-cents at the time of exposure.The report also concludes thatthe long-term health conse-quences of the accident are lessdramatic than initially feared.Shkolnikov et al. (1999) report-ed a reduction of mortalityfrom childhood leukaemia inRussia and Ukraine, possiblydue to improved survival alsoobserved in other Europeancountries (Coebergh et al.,2001).


0 50 100 150 200

Data sources:


ACCISBelarus

GlobocanEastern Europe

CIFCEastern Europe 0

10

20

30

40

50

Leuk

aemia

Lymph

omas

CNS

tumou

rs

Neur

oblas

toma

Retin

oblas

toma

Wilm

s tum

or

Thyro

id

Other

Percentage

Eastern EuropeBelarus

Figure 2.15 Crude rate of childhood cancer incidence in Belarus(ACCIS 2005, www-dep.iarc.fr/accis.htm, unpublished data) andEastern Europe as estimates of crude rates in Ukraine

Figure 2.16 Relative frequencies of tumour types registered inEastern Europe and Belarus as examples of expected pattern inUkraine (ACCIS 2005, www-dep.iarc.fr/accis.htm, unpublisheddata)

1. The Chernobyl Forum is made up of eight UN specialized agencies - the International Atomic EnergyAgency (IAEA), the World Health Organization (WHO), the United Nations Development Programme(UNDP), the Food and Agriculture Organisation (FAO), the United Nations Environment Programme(UNEP), the United Nations Office for the Coordination of Humanitarian Affairs (UN-OCHA), theUnited Nations Scientific Committee on the Effects of Atomic Radiation (UNSCEAR), and the WorldBank - as well as the governments of Belarus, Russia and Ukraine.

ReferencesCoebergh JW, Pastore G, Gatta G, Corazziari I, Kamps W; Eurocare Working Group (2001) Variation insurvival of European children with acute lymphoblastic leukaemia, diagnosed in 1978-1992: the Eurocarestudy. Eur J Cancer 37:687-94.

Note

Venezuelaemerged as anindependentcountry in 1830.

It currently has a population of25.7 million, of which 32% arechildren. Child mortality is low(22 per 1,000 live births), as isthe estimated proportion ofundernourished children (4.4%).Life expectancy at birth is 74years. Among the 10 selectedcountries it has the highest percapita expenditure in health,about four times greater thanthat of the other countries.

Surprisingly, it is also the coun-try with the poorest coverage ofimmunisation againstpoliomyelitis (table 2).

Mortality rates from allcancers in 1993 (the last officialstatistics reported to WHO)were 50 deaths per million forboys and 43 deaths per millionfor girls per year. No directmeasures of incidence exist, butbased on the region-specific sur-vival probability and mortalityincidence rates, it is estimated inGlobocan 2002 at about 110 permillion children, which allows

us to predict 920 new cases peryear (figure 2.17). The reliabledata of the registries of Cali inColombia and Costa Ricarecorded rates about 20% high-er. The lower estimate forVenezuela may be due tounder-reporting of cause-specif-ic deaths, which are the basis ofthe Globocan estimates.

A small but continuingdecline in mortality inVenezuelan children, startingaround 1965, has been described(Levi, 1995). The decline wasmainly due to reduced mortality


Venezuela

Hatch M, Ron E, Bouville A, Zablotska L, Howe G (2005) The Chernobyl disaster: cancer followingthe accident at the Chernobyl nuclear power plant. Epidemiol Rev 27:56-66.

Jackson RJ, DeLozier DM, Gerasimov G, Borisova O, Garbe PL, Goultchenko L, Shakarishvili G,Hollowell JG, Miller DT (2002) Chernobyl and iodine deficiency in the Russian Federation: an environ-mental disaster leading to a public health opportunity. J Public Health Policy 23(4):453-70.

Leenhardt L, Aurengo A (2000) Post-Chernobyl thyroid carcinoma in children. Baillieres Best Pract Res

Clin Endocrinol Metab (Dec 2000) 14(4):667-77.

Moysich KB, Menezes RJ, Michalek AM (2002) Chernobyl-related ionising radiation exposure and can-cer risk: an epidemiological review. Lancet Oncology (May 2002) 3(5):269-79.

Parkin DM, Clayton D, Black RJ, Masuyer E, Friedl HP, Ivanov E, Sinnaeve J, Tzvetansky CG, GerykE, Storm HH, Rahu M, Pukkala E, Bernard JL, Carli PM, L'Huilluier MC, Menegoz F, Schaffer P,Schraub S, Kaatsch P, Michaelis J, Apjok E, Schuler D, Crosignani P, Magnani C, Bennett BG, et al.(1996) Childhood leukaemia in Europe after Chernobyl: 5-year follow-up. Br J Cancer (Apr 1996)73(8):1006-12.

Prisyazhiuk A, Pjatak OA, Buzanov VA et al. (1991) Cancer in the Ukraine, post-Chernobyl. The Lancet

338:1334-5.

Shkolnikov VM, McKee M, Vallin J, Aksel E, Leon D, Chenet L, Mesle F (1999) Cancer mortality inRussia and Ukraine: validity, competing risks and cohort effects. Int J Epidemiol (Feb 1999) 28(1):19-29.

The Chernobyl Forum (2005) Chernobyl´s Legacy: Health, Environmental and Socio-Economic Impacts.Vienna: IAEA. (See www.iaea.org/NewsCenter/Focus/Chernobyl)

Tronko MD, Bogdanova TI, Komissarenko IV, Epstein OV, Oliynyk V, Kovalenko A, Likhtarev IA,Peters SB, LiVolsi VA (1999) Thyroid carcinoma in children and adolescents in Ukraine after theChernobyl nuclear accident – Statistical data and clinicomorphologic characteristics. Cancer 86:149-156.

Williams D (2002) Cancer after nuclear fallout: lessons from the Chernobyl accident. Nat Rev Cancer

2:543-0.

from leukaemia, which accountsfor over 40% of all types, basedon the regional average (figure

2.18). In a series of nearly 800clinical histories of solid tumours(excluding leukaemia) in chil-dren under 18 years treated bythe oncology service of the JMde Los Rios Children’s Hospitalin Caracas, lymphomas were the

most common tumour type, fol-lowed by CNS tumours (Pereiraet al., 2003).

The oncology departmentof the Children’s Hospital is themain referral centre in the coun-try for both haematopoietic andsolid tumours. Systematic evalu-ations of the survival of child-hood cancer patients in

Venezuela are rare in the inter-national literature (Acquatella etal., 2004; De Salvo et al., 1992).Collaborations between paedi-atric oncologists in the countryhave been established to pro-mote the nationwide applicationof treatment protocols for cer-tain childhood tumour types(Acquatella et al., 2004).


Acquatella G, Insausti CL, Garcia R, Gomez R, Hernandez M, Carneiro M, Santos S, Nouel A(2004) Outcome of children with B cell lymphoma in Venezuela with the LMB-89 protocol. Pediatr

Blood Cancer (Oct 2004) 43(5):580-6.

Alvarez MT, Castaneda C, Escobar A, Fragoso T (1991) Aflatoxin detection in urine in liver diseases inchildhood. G E N (Jul-Sep 1991) 45(3):205-9.

Burguera JL, Burguera M, Gallignani M, Alarcon OM, Burguera JA (1990) Blood serum selenium in theprovince of Merida, Venezuela, related to sex, cancer incidence and soil selenium content. J Trace Elem

Electrolytes Health Dis (Jun 1990) 4(2):73-7.

Carrascal E, Collazos T (1998) Colombia, Cali Cancer Registry, 1982-1991. IICC-2, pp. 71-74.

De Salvo L, Plumacher Z, Rios M, Romero E, Weir J, Gomez O, Salas D (1992) CD10(CALLA)-nega-tive acute lymphoblastic leukemia. A group with a bad prognosis. Invest Clin 33(4):147-52.

Jaffe W (1992) Selenium, an essential and toxic element. Latin American data. Arch Latinoam Nutr (Jun1992) 42(2):90-3.

Levi F, La Vecchia C, Lucchini F, Negri E, Boyle P (1995) Patterns of childhood cancer mortality:America, Asia and Oceania. Eur J Cancer 31A(5):771-82.

Pereira A, Santos S, Mota F (2003) Tumoures solidos en ninos y adolescentes: registro hospitalario decancer (1985-2001). Rev Venez Oncol 15:161-9.

Rodríguez AC, Bratti C, Muñoz G, Herrero R, Balmaceda I (1998) Costa Rica, Costa Rica NationalTumour Registry, 1984-1992. IICC-2, pp. 75-77.

References

0 50 100 150 200

Data sources:


IICC-2Colombia

GlobocanCentral America

CIFCCentral America 0

10

20

30

40

50

Leuk

aemia

Lymph

omas

CNS

tumou

rs

Neur

oblas

toma

Retin

oblas

toma

Wilm

s tum

or

Other

Percentage

Venezuela

Colombia and Costa Rica

Figure 2.17 Crude rate of childhood cancer incidence inColombia, Cali (Carrascal and Collazos, 1998) and in CentralAmerica as estimates of crude rates expected in Venezuela

Figure 2.18 Relative frequencies of tumour subtypes registered inVenezuela compared to the average of Colombia, Cali (Carrascaland Collazos, 1998) and Costa Rica (Rodríguez et al., 1998)

Vietnam declaredits independencein 1945 and wasreunited in 1975-

6. It is a densely-populatedcountry: over 81 million,growing by 1.04% per year.Life expectancy at birth is 71years. Children under 15account for 31% of the popula-tion, child mortality is moder-ately high (26 per 1,000 in boysand 20 per 1,000 in girls) and ahigh percentage of childrenunder five appear below idealweight (table 2).

Several infectious diseasesare known to be prevalent inparts of Vietnam. The preva-lence of chronic carriers ofhepatitis B ranges between 10%and 15% of the population, alsoin children (Pham and Nguyen,1996).

Health care is largelyunder government control,through a network of

Department of Health districtsand primary health centres.Since 1990, private medicinehas been permitted.

Most specialised hospitalsand medical research institutesare located in the two largestcities of Vietnam: Hanoi andHo Chi Minh City.

In the north of Vietnam,the specialised anti-cancer cen-tres are the National CancerInstitute (Hospital K), locatedin the centre of Hanoi, and apilot cancer centre in theoncology department of ThanhNhan Hospital, one of the dis-trict polyclinics.

In the south of the coun-try, childhood cancer cases aremainly treated in four hospitalslocated in Ho Chi Minh City.

Hanoi and Ho Chi MinhCity are both covered by can-cer registries. Data are collectednationwide from all hospitalswhere cancer patients might

come for diagnosis or treat-ment. The majority of diag-noses are verified microscopi-cally (65% in Hanoi, and almost90% in Ho Chi Minh City).

The incidence rates differbetween the north and southfor all tumour types and forspecific tumour sub-groups.The incidence rate recorded inHanoi (ASR=110 per million)is comparable with rates inother neighbouring countries,while those seen in Ho ChiMinh City are lower (ASR=88per million), giving an averageof 100 per million (figure 2.19).Higher rates in the North arereported for almost all tumourtypes, with the largest differ-ence seen for lymphomas, twiceas common in Hanoi as in HoChi Minh City. The risk ofCNS tumours is higher in HoChi Minh City (11 per million)(figure 2.20). If we take thehigher of the two compared


0 50 100 150 200

Data sources:


Vietnam:IICC-2 (Hanoi), Nguyen et al., 2000 (HCMC)

GlobocanSouth Eastern Asia

CIFCSouth Eastern Asia 0

10

20

30

40

50

Leuk

aemia

Lymph

omas

CNS

tumou

rs

Neuro

blasto

ma

Retin

oblas

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Wilm

s tum

or

Other

Percentage

Vietnam (Hanoi, Ho Chi Minh City)

Figure 2.19 Crude rate of childhood cancer incidence in Vietnam,Hanoi (Pham Thi Hoang Anh et al., 1998) and Ho Chi Minh City(Nguyen MQ et al., 2000), weighted by population size, com-pared to crude incidence rates in South-East Asia

Figure 2.20 Relative frequencies of tumour types registered inVietnam, Hanoi (Pham Thi Hoang Anh et al., 1998) and Ho ChiMinh City (Nguyen MQ et al., 2000)

Vietnam

Chang KC, Khen NT, Jones D, Su IJ (2005) Epstein-Barr virus is associated with all histological subtypesof Hodgkin lymphoma in Vietnamese children with special emphasis on the entity of lymphocyte pre-dominance subtype. Hum Pathol (Jul 2005) 36(7):747-55.

Hoang TT, Bengtsson C, Phung DC, Sorberg M, Granstrom M (2005) Seroprevalence of Helicobacterpylori infection in urban and rural Vietnam. Clin Diagn Lab Immunol (Jan 2005) 12(1):81-5.

Nguyen MQ, Nguyen CH, Kramarova E, Parkin DM (2000) Incidence of childhood cancer in Ho ChiMinh City, Vietnam, 1995-97. Paediatr Perinat Epidemiol (Jul 2000) 14(3):240-7.

Pham HP, Nguyen TV (1996) Hepatitis B virus infection: the data from the vaccination service in theHo Chi Minh City Faculty of Medicine. The 4th Medico-Pharmaceutical Conference and 4th GrallMedical Programme, 16-18 November 1995, Ho Chi Minh City, Vietnam.

Pham Thi Hoang Anh, Nguyen Ba Duc, Tran Hong Truong and Nguyen Hoai Nga (1998) Vietnam,Hanoi Cancer Registry, 1991–1994. IICC-2, pp. 235-237.


References

rates in each tumour group asthe standard rate, the likelyvalue of the age-standardised

rate for Vietnam as a whole is117 new cases per million children per year. This would

mean almost 2,636 new childhood cancer patients peryear.


Treatment of childhoodcancer is one of thegreat success stories of

modern medicine. In the 1950sfew children survived, and evenin the early 1960s survival rateswere as low as 25%. In centresoffering today’s most advancedcare, survival rates nowapproach 80%, and for somecancers, such as Hodgkin’s dis-ease or retinoblastoma, survivalrates are even higher.

Many things, includingnew therapies, have contributedto these improvements, butnational and international col-laboration has been vital.Cancer in children is a rare dis-ease, and without collaborationprogress would be slow.Networks of clinicians – forexample, the InternationalSociety of Paediatric Oncology(SIOP), the Children’sOncology Group in the US,and the Medical ResearchCouncil in the UK – haveworked together to developand evaluate new protocols.Collaboration contributes toquick and efficient assessmentof the value of new therapiesand to progress towards furtherdevelopment and sophisticationof treatment. It has been instru-

mental in improving survivalrates in the western world andcan, and must, be expanded toensure that similar opportunitiesare offered to children through-out the world.

The stark contrastbetween opportunities for chil-dren with cancer in differentparts of the world is well illus-trated in the previous chapters.Many factors compromise sur-vival rates in the developingworld. These include lack ofresources, trained personnel andaffordable drugs. But survivalrates are also compromised byunderstandings of cancer andconsequent individual behav-iour. It is not enough to intro-duce western-style medicineinto a community while ignor-ing the social and culturalbeliefs underlying attitudestowards the disease. Familieswho feel they are being pun-ished by their child’s illness arenot likely to seek timely med-ical care or even follow pre-scribed medication.

For this reason, this chap-ter begins with an overview ofthe social and cultural determi-nants of beliefs about cancer.Differences in these beliefsinfluence behaviour, such as

attending for screening, seekingtimely diagnosis, and adheringto treatment. Secondly, weprovide a brief overview ofwhat is known about theimpact of childhood cancer onchildren and their families,focusing on key stages: i) diag-nosis and treatment; ii) long-term survival; and iii) palliativecare, including pain control.Thirdly, based on this informa-tion, we describe what an opti-


CHAPTER 3Psychosocial aspects of childhood cancerChristine Eiser, Jimmie Holland, Christoffer Johansen

32 Childhood Cancer. Rising to the challenge32 Childhood Cancer. Rising to the challenge

To improve survival rates in thewhole world will require morethan making available interna-tional treatment protocols.Delays in diagnosis and aban-donment of treatment are themost common problems in thedeveloping world, seriouslycompromising survival.

Delay in seeking a diagno-sis may spring from a lack ofknowledge or from guilt. Theassumption that cancer isinevitably fatal can contributeto failure to seek timely medical

help in all cultures. Those whohave a fatalistic approach to lifemay accept cancer as God’s willand neither seek advice noradhere to treatment. There is abelief across several cultures thata family member or an enemyor wizard causes the disease.Such a belief fits with theactions of traditional healers,who may be called in to exor-cise the alien.

Patients or families mayalso delay seeking a diagnosisbecause they fear being blamedfor past behaviour. Such viewsare reinforced by establishedlinks between smoking andcancer, for example. Mothersmay assume that they didsomething wrong when theywere pregnant. Whereaslifestyle (smoking, alcohol anddiet) accounts for many cancersin adults, there is no knowncause for most childhood can-cers (see chapter 1). Wherethere is no known cause, peo-ple typically search for somemeaning to make sense of theirexperience. This happens in allcultures, and consequently doc-tors in the developed worldroutinely allay parents’ fears thatthey are to blame. In develop-ing countries, parents may holdsimilar fears, but these are less

likely to be addressed and con-sequently may affect behaviourtowards the child and treat-ment.

Lay beliefs and attitudes tocancer have been shown to beassociated with delays in treat-ment, resistance to attendingfor screening, and attitudestowards therapy among adultsof different cultures (Dein,2004). We may safely assumethat culturally held beliefs alsoaffect parents’ approaches tomanaging their child’s illness.Even in developed countriessuch as Britain, parents areoften reluctant to use the term“cancer” and prefer to use lessthreatening terms, especiallywhen talking to their children.For example, rather than speak of retinoblastoma withtheir child, families in the UKtypically discuss “the problemwith your eye”.

Public perceptions of can-cer and people with canceraffect the way in which othersreact to the child and family. Inmany societies, there is still astigma attached to cancer, per-haps more than for many otherconditions. Fears about whetheror not cancer is “contagious”or that the child is somehow toblame may lead to the family

mal service for children mightbe like and consider the specificchallenges to achieving this inthe developing world. In a

final, optimistic section, wereview just some of the innova-tions that are currently in place.These will undoubtedly con-

tribute to achieving timely,optimal and quality care forchildren with cancer through-out the world.

Cultural differences in beliefs about cancer

Childhood Cancer. Rising to the challenge 33Childhood Cancer. Rising to the challenge 33

being ostracised at a time whenthey are most in need of help.While some families acknowl-edge an enormous debt tofriends who helped them

through the cancer experience,others suggest that managingthe disease was made harder byprejudice and lack of support.

For all these reasons,

understanding cultural responsesto cancer is as important tohealth-care professionals asknowledge of statistical trends(Dein, 2004).

The impact of cancer on children and familiesDiagnosis and treatment

A great deal is known abouthow a diagnosis of canceraffects children and their fami-lies. It is vital to build on thisinformation when organisingchild-friendly services and qual-ity care. The diagnosis of child-hood cancer is associated with agreat deal of practical and emo-tional stress for families. Allworry, realistically, that thechild may die. They must carefor the sick child and keep hos-pital appointments while theycontinue working and caringfor other members of the fami-ly. Those living in difficult cir-cumstances are likely to carry aheavier burden, especiallywhere there are few appropriateresources and services. Caringfor a sick child almost alwaysfalls more heavily on mothers,but in developing countries it isworse. In counties likeBangladesh, women are thepoorest and most vulnerable,even among the hard-corepoor.

On diagnosis, children areinevitably frightened, trauma-tised and in pain, but they havedifferent ways of showing theirdistress. While some becomeaggressive and hostile towards

their carers, others withdrawinto themselves. Their qualityof life is greatly compromised,compared with that of otherchildren of the same age. Theymay be unable to go to schoolor take part in social activities.

Young children are upsetby visits to hospital, needles,and all the strange people thatthey have to deal with. They

may become “clingy”, insecureand reluctant to leave their par-ents. Often they act as if theywere much younger. They maybe afraid to sleep alone and lesswilling to do things for them-selves.

Older children maybecome quite withdrawn butare better able to understand. Itis possible to explain what is

Improve public understanding of childhood cancer and itstreatment

Tackle lay beliefs about cancer and encourage early diagnosis

Educate medical staff and nurses about children’s responsesto cancer

Consider the whole child and provide play and education inhospital schools

Recognise and allay parents’ guilt reactions

Facilitate return to school wherever possible


happening to them and preparethem for some of the proce-dures. The disadvantage is thatthis greater understanding maylead to more worries about thepotential implications of thedisease. They may know theyare very ill. They may be afraidthey may die but be scared toask their parents.

It used to be thought thatit was kinder not to tell chil-dren that they had cancer, asthey would worry, give up, andnot cooperate with treatment.We now know that childrenrespond better to being told thetruth. It is important that theytrust their parents and doctorsto be honest with them. Likeadults, children generally copebetter with procedures wherethey are prepared, and manycreative ways have been devel-oped to explain these proce-dures to them. Through play,children act out their anxietiesand can be taught coping skillsto manage painful procedures.Many books and leaflets about

childhood cancer have beenwritten for child patients andtheir healthy brothers and sis-ters, including those in ethnicminority groups (see e.g.www.candlelighters.org).

While on chemotherapy,children may suffer dramaticmood swings and feel very tiredand sick. Chemotherapy alsoaffects growth of normal tissue,and their hair may fall out. Thisupsets some very much andothers not at all. Children onchemotherapy are sometimesravenously hungry and maywake parents throughout thenight demanding huge meals.Consequently some childrenput on a lot of weight. At othertimes, children may find eatingdifficult. They eat little andmay need to be fed by nasaltube. They may have littleenergy to do everyday thingsand certainly not to run andplay as normal.

Chemotherapy suppressesthe immune function, and sochildren should avoid exposure

to infectious diseases, includingcommon infections. Home-based schooling may be neces-sary, since it reduces the risk ofinfection and can help childrenkeep up with schoolwork whenthey are not well enough to bein school.

Diagnosis of cancer alsohas implications for the familyand the community in whichthe child lives. Parents mustlearn to work with medical andnursing teams and play theirpart in caring for the sick child.Since the late 1950s, legislationin the US and Western Europehas ensured that parents havethe right to stay with their childin hospital, and most parentswant to do this. Their role is togive the child some stability andemotional security, providenon-medical care (feeding andtoileting), and negotiatebetween staff and child. Manybecome anxious and depressed,partly through worry about thechild and partly through con-finement to the hospital setting.Mothers tend to shoulder moreof the burden of care andreport greater emotional distressthan fathers. Post-traumaticstress symptoms (PTSS) arecommon among parents, espe-cially following diagnosis.These include re-living distress-ing events, physiological arous-al, and efforts to avoid cancer-related experiences.

Brothers and sisters areaffected too. In all societies,older siblings often play a

A child-friendly hospital environment


crucial role in educating andsocialising younger children and these, in turn, learn a lotfrom their older siblings. Whenone child becomes seriously ill, healthy siblings are sad,frightened, and concernedabout their own health and vulnerability. Older siblings areespecially likely to assumeresponsibility for looking afteryounger children and helpingwith domestic tasks. Manydevelop behavioural and emo-tional problems at home andschool. Others become moremature, compassionate, andindependent.

Outside the immediatefamily, schools are in the bestposition to offer a child theopportunity to be “normal”,rather than a child with cancer.School is where children makefriends, gain independence fromtheir families and are preparedfor adult life. For children withcancer, attending school is dou-bly important, because it meansthat their lives are not so differ-ent from other children’s.

Doing well in school isvital for future work opportuni-ties. It is therefore essential thatmedical staff, parents and teach-ers work together to makeschool a happy experience forall children.

Teachers can do much tomake it easier for children withcancer to return to school andto ensure that they take part inas many activities as possible.Teachers have a central role to

play in encouraging their inte-gration in normal life.

Teachers, however, mayquite naturally have concernsabout the responsibilityinvolved in having a child withcancer in the classroom. Insome parts of the world, theoncology outreach nurse willprovide information and practi-cal help. Often it is these nurseswho enable the child to attendschool, by providing routinemedical care in school, ratherthan requiring the child toreturn to hospital.

Long-term survivalChildren with cancer mayexperience adverse side effectsof treatment in both the shortand the longer term. We havelearned that real cure is morethan eradication of the disease.Improved survival rates are oflimited value if the survivingadult is unable to live inde-pendently. In treating childrenwith cancer, we must thinkbeyond the immediate burden

of the disease and try to ensurethat the surviving adult has theoptimal chance of a normalquality of life. Real cureincludes at least three compo-nents: physical (eradication ofthe disease), psychological(acceptance of cancer as a pastevent without interference withnormal development andschooling) and social (incorpo-ration of the person into societywithout prejudice).

Reports of the frequencyof late effects in survivors ofchildhood cancer range from33% to 75%, depending on theinitial cancer and the type oftreatment. Endocrine problemsassociated with poor growthand hormonal problems arecommon (Wallace and Greene,2004). There may also be long-term problems in memory andlearning. These are especiallythe result of irradiation to thebrain or central nervous system,typically following treatment


Encourage liaison betweenhospital and school

Address teachers’ concerns

Provide home-based educa-tion where necessary

Educate and encouragefriends to offer practical helpand thus facilitate return toschool

Make arrangements forrapid identification of riskyinfections should they occur


for brain tumours. These learn-ing deficits can compromise thechild’s chances of achieving anormal life and significantlycontribute to the burden ofcare for families, especiallywhere they result in the loss ofage-appropriate independenceand autonomy.

Since the exact cause ofchildhood cancer is not known,it is thought that survivors maybe especially vulnerable to can-cer generally, and thereforehealth education is required toreduce smoking and otherlifestyle behaviour known to beassociated with cancer.Comprehensive quality care forchildren with cancer mustinclude these late consequencesof treatment.

Pain management and palliative careChildren experience fatigue andbone pain as part of the diseaseand many other physical symp-toms as a result of chemothera-py and radiotherapy. Anti-emetics or anti-sickness pillsprovide an important treatmentfor chemotherapy-related nau-sea and have contributed muchto improved quality of life.Children are generally afraid ofinjections, and those with can-cer may expect to have manyduring the course of treatment.EMLA creams are now widelyavailable and help in reducingneedle pain. The Hickman line(“long line” or Portacath) is atube that is used to givechemotherapy. It is insertedinto the chest and directly intoone of the major blood vessels;the end of the line hangs out ofthe chest and is usually sealedwith a cap. The advantage of acentral line is that there is noneed for injections or drips:treatment may be injected

directly into the bloodstream.There are some disadvantages(an operation is needed to putthe line in, and it is also impor-tant that the line stays dry,which can create problems atbath-time, and for older chil-dren, in that they are unable toswim). On balance, these disad-vantages are outweighed formost children by the freedomfrom injection pain.

Corticosteroids are widelyused in the management ofsymptoms, both during activetreatment and in the palliativephase when it is recognised thatthere is no realistic chance ofcure. The beneficial effectsappear to be related to reduc-tion of peritumour oedema,with a consequent improvementin symptoms such as headache,vomiting and irritability.

Despite the best of currentmedical care, some childrenwill not survive. For their fami-lies, news that it is not possibleto cure the child will come as ahuge shock, often made worseby years of treatment and raisedhopes. Quality of life questionsare especially pertinent at thisstage of treatment. All childrenhave the right to die withoutunnecessary pain, fear or anxi-ety, and should be offeredappropriate medical, spiritualand psychological support.

Offer all children access topain relief

All children have the right todie without unnecessary fear

Provide comprehensive fol-low-up care for survivors ofchildhood cancer

Assess physical and psycho-logical late effects

Provide lifestyle advice(smoking, sunbathing) forsurvivors

Provide advice during treat-ment about education andemployment


Based on current knowledgeabout how cancer challengesthe achievement of normal life,(Eiser, 2004), we can make sev-eral recommendations regardingoptimal care for children withcancer. It is vital to provideholistic care: to consider theneeds of the developing childand enable the child to have asnormal a childhood experienceas possible. This means involv-ing the family and encouragingparticipation in everyday life.This is a challenge for manyfamilies, who want to protectthe child with a potentially life-threatening illness. We alsowant to ensure that the surviv-ing adult has the necessary skillsto function as an adult.

We need a multi-discipli-nary approach to the manyways in which the disease cancompromise children’s qualityof life, with contributions notonly from medical and nursingstaff, but also from social work-ers (help with costs of care),play leaders (work with chil-dren and prepare them for pro-cedures), psychologists (assesslearning and behavioural prob-lems and develop interventions)and teachers (offer education inhospital and help the child toreintegrate in normal life).More than any other disease,cancer challenges beliefs aboutpersonal vulnerability and mor-tality. Acknowledging thediverse ways in which children

and families deal with this exis-tential crisis must be part ofcomprehensive care (Masera etal., 1993, 1998b, 1999). Givenour knowledge about the likeli-hood of late effects among sur-vivors, provision also needs tobe made for appropriate follow-up. This is vital for the individ-ual survivor, as well as toinform the development ofnew, less toxic treatments.

In optimising care forchildren worldwide, many diffi-culties must be overcome.

CostsMoney is ofcourse a problem.Cancer treatmentis expensive, andcompeting priori-ties for treatmentof other condi-tions must beacknowledged. Inthe developingworld, childrenoften get sometreatment for their cancer, butnot a curative dose. Often, theethical dilemma is, “Do we tryto treat a few children complete-ly to effect a cure, or do wetreat them all a little bit and pro-long all their lives a little – butcure none?” The tragedy is allthe greater for curable tumours(e.g. Burkitt’s lymphoma).

Loss of family income is aproblem for all families. In thedeveloped world, families may

receive benefits to offset thisloss of income, though manyconsider these inadequate tocover the costs. In the develop-ing world, especially wherefamilies pay for medication,children may receive only oneor two doses before droppingout of treatment.

Lack of knowledge andreliance on traditionalmedicineThe consequences of lack ofknowledge and reliance on tra-ditional medicine are wide-

spread throughout the develop-ing world.

The boys in this photo-graph presented with advancedBurkitt’s lymphoma (Harrison,2005). The family, whobelieved the problem was theresult of the boys scratchingtheir eyes, had sought helpfrom a traditional healer. Thehot water presses prescribed haddone nothing for the rapidlygrowing cancer.

Optimal care for children and challenges in the developing world

Burkitt’s lymphoma


CostsCost implications are directlyresponsible for many childrendropping out of care beforereceiving the full treatment theyneed. All drugs used in treat-ment and supportive care in thecontext of treatment protocolsshould be designated as essentialdrugs. A price policy is alsoneeded (Eden et al., 2004).

Typically care has beendelivered through a central

service, but in the longer termit is vital to establish units orshared-care environmentsthroughout the country toovercome family costs associat-ed with transportation, loss ofpaternal income, and ultimateabandonment of treatment. Inaddition, financial support isnecessary to fund the establish-ment of more local centres ofexcellence in developing coun-tries to ensure availability and

appropriate use of drugs.Establishing local centres cansignificantly reduce dropoutfrom treatment. For example,Sharma (2005) reports that only4% abandoned treatment whenit was restricted to children ableto remain close to a treatmentcentre. Similarly, the dropoutrate in Dhaka was 75% beforethe local parent organisationestablished a shelter. Thisreduced abandonment by half

RegistrationAs discussed in chapter 1, weneed accurate childhood cancerregistries to understand theextent of the problem and planefficient health intervention.There are around 160,000 reg-istrations worldwide each yearfor childhood cancer (IARC),but it is estimated that between225,000 and 250,000 childrenget cancer each year. Thus,approximately 60,000 to 90,000are not registered. Theseinclude cancers that are notrecognised, not diagnosed, not

presented, presentedbut abandonedbefore registration,or treated but notregistered. Lack ofinfrastructure toreport new cases is amajor obstacle toour knowledge ofcancer in the devel-oping world, and inmany parts of the

world only rudimentary reg-istries are in place. It must alsobe remembered that in manyparts of the developing world,families may not know basicinformation, such as a child’sage. The mother of the twoboys with Burkitt’s lymphomadid not know the date of birthof either of the children.

Training and educationTrained doctors to deliver treat-ment and monitor side effectsare clearly vital. Hospitals alsorely on voluntary help, but lack

of information and prejudicemean that individuals may beunwilling to become involved.This has been identified as aspecial problem in Egypt, oneof the 10 countries selected aspilot countries during the firstyear of the UICC WorldCancer Campaign. It is vital toimprove public awareness ofchildhood cancer and tacklemisconceptions (that cancer iscontagious, for example) direct-ly. In the countries selected byUICC (Bangladesh, Egypt,Honduras, Morocco,Philippines, Senegal, Tanzania,Ukraine, Venezuela andVietnam) special difficultiesoften need to be overcome. InUkraine for example, there is ahigh incidence of thyroid cancerassociated with fall-out fromChernobyl. This incidenceposes a huge burden on thehealth service over and abovenormal expectations about inci-dence of childhood cancer.

Current achievements and innovations


because families have some-where to stay and receive socialand emotional support fromother families, and the parentcharity funds some drugs.Comparable success using thismodel has been achieved by theparent group in Rabat,Morocco (www.icccpo.org).

Families, too, incur con-siderable expense. Caring for achild with illness or disabilityconsistently erodes familyfinances. In addition to medicalcosts, families will require helpwith other expenses, includingtravel to treatment centres, aidsfor the child and medicine.This can be achieved througheconomic empowerment of thefamily. Innovation programmesto empower women throughsmall micro-credit programmeshave been successful inBangladesh. Parent groups (forexample, the Childhood CancerFoundation South Africa,www.choc.org.za) may contributeto this by helping families with

travel costs, at the same timeincreasing the chances that thechild will remain in treatmentbeyond an initial one or twodoses.

StatisticsDespite the problems, goodregistration is possible, and con-sequently survival rates equiva-lent to those in WesternEurope can be achieved (e.g.Dr Al-Lamki in Oman,www.inctr.org). While establish-ing registries appears to be apurely scientific exercise, socialand cultural prejudice and prac-tices can influence statistics.Sick girls are less likely to reachspecialist care than boys, thuspotentially distorting knowl-edge about incidence and sur-vival rates. In Bangladesh, thereis a deficit of children underone registered with cancer. Thisis most likely a result of taboos,where babies are not to betaken out of the house buttreated by traditional and spiri-

tual healers.Older childrenoften present atan advancedstage, due tosocio-econom-ic constraints.The father,who is expect-ed to accompa-ny a child to ahospital, is usu-ally the onlysource ofincome in the

family, so a visit to a doctorgets postponed. A relativelyhigh male-to-female ratioreflects traditionally preferentialattitudes towards boys, who areseen as an asset for the family:the boys will in future earn aliving for their families, whilethe girls will have to be given adowry. Girls are often neglect-ed and receive inferior educa-tion and social and medicaltreatment. Their under-ascer-tainment in the registry thusreflects their under-diagnosis.

Training and educationThe financial costs of westernmedicine mean that many peo-ple seek the help of traditionalhealers, who are cheaper andoften more psychologically sup-portive and whose treatmentsare compatible with their beliefsand their cultures. The need istherefore to educate not onlyparents but also the traditionaland herbal healers. They needto be encouraged to refer to thedoctors when they do not getgood results. At present, unfor-tunately, this is often when cur-ative treatment is no longerpossible.

Efforts to correct theimbalance in access to qualitycare by educating and trainingstaff have been described. Moreand more, the need to expandquality medical care for patientsthroughout the world isacknowledged, and trainingprogrammes for those interestedin adult and child medicine are

A support group for children with cancer and survivorsin India


Where children grow up inpoverty and have no access tohealth care or education, thereis clearly a great deal to bedone for all children, and theneeds of the few with cancermay not be considered of high-est priority. Such an attitudeignores the fact that cancer inchildren is highly treatable.Improving survival rates for allchildren with cancer clearlydepends on establishing closerlinks and greater collaborationbetween doctors and providing

enough money and infrastruc-ture for more adequate treat-ment programmes throughoutthe world.

The best treatment in theworld will have limited success,however, if we fail to acknowl-edge the role of social and cul-tural beliefs about the causes,prevention and treatment ofcancer. At the public level,social and cultural factors con-tribute to the availability oftreatment. Public understandingabout the prevalence and

treatability of childhood cancerin the developing world canbring pressure on governmentsto take action and on drugcompanies to control drugcosts.

Social and cultural factorsalso contribute at the familyand individual level. Familiesneed information to be awareof symptoms, accept the illnessand take the child for treatmentwithout fear of recrimination,rather than relying on tradition-al healers. Attention must also


being developed. These include“twinning” institutions indeveloped and underdevelopedcountries (Ribeiro and Pui,2005; Masera et al., 1993,1998b, 1999); providing infor-mation services (Cure4Kids,www.cure4kids.org, is an infor-mation service for cliniciansprovided by St Jude’s Child-ren’s Research Hospital) andfunding travel scholarships forstaff. The International Associ-

ation for Hospiceand Palliative Care(IAHPC, www.hos-

picecare.com) fundstravel fellowships forprofessionals to visitdeveloping countriesfor brief periods andprovides teachingand advice aboutdelivery of palliativecare.

Pain control is veryimportant. Morphine is often inshort supply, and there are fewformal programmes for pallia-tive and end-of-life care any-where in the developing world.Parent organisations - forexample, the InternationalConfederation of ChildhoodCancer Parent Organisations(ICCCPO, www.icccpo.org) -provide a forum for parents toexchange information and learn

how care is organised elsewherein order to inform and directservices in their own country.There are also many laudableexamples of parent organisa-tions providing funding andtraining for medical staff, socialworkers and support staff.

We can also learn fromother groups involved inimproving services for sick anddisabled children throughoutthe world. Significant strideshave been made by groupsinvolved with the care of phys-ically disabled children, whichhave developed training pro-grammes to give mothers theskills needed to promote theirchild’s development. Theirexperience suggests, however,that economic and cultural bar-riers may restrict mothers fromtaking advantage of theseschemes.

Conclusions


be paid to the social and cultur-al settings in which cancer isdiagnosed and treated. Failureto understand idiosyncraticbeliefs about cancer and socialand family norms can jeopardisethe success of any treatmentprogramme.

These matters have beenaddressed by the World HealthOrganization (WHO) in thecontext of global strategies forcancer control in adults. Above,we see an outline of the WHOpriority action plan for nationalcancer control programmes.Psychosocial questions are rele-vant at all stages of the disease -prevention, early detection,screening and treatment, andpain and palliative care -although varying by culture,society and level of resources.Raising the level of awarenessof the importance of psychoso-cial questions through educa-tion is a laudable goal.

Caring for children withcancer poses a major challenge,because the need is not only tocure the disease, but also towork towards optimising the

child’s poten-tial to achievea normaladult qualityof life. Muchprogress hasbeen made inthe developedworld inachievingthis, and thelessons

learned must now be extendedto children everywhere.

Screening for late effects isan issue for survivors of child-hood cancer. These young peo-ple need to understand thelong-term consequences oftheir treatment and the possibleimplications for their futurehealth. In an ideal world, sur-vivors of childhood cancerwould be followed up for aslong as possible, both to informthe young person and offerremedial care where necessaryand, from a scientific perspec-tive, to understand the relation-ship between treatments andlate effects.

Prevention isalso an issue for sur-vivors, since knowncancer risks such assmoking are thoughtto be a special prob-lem for this group.Health promotion,in terms of adviceabout smoking, sun-exposure and diet,must be appropriateto the social and

cultural setting in which theindividual lives.

Finally, during palliativeend-of-life care, psychosocialsupport is more critical thanever, since nothing matters nowexcept the child’s quality of life.At this time, attending to thefamily’s support networks andacknowledging their emotionaland spiritual needs is para-mount.

A great deal has alreadybeen done to improve survivalrates and quality of life for chil-dren with cancer throughoutthe world. In writing this arti-cle, we have been impressed bythe number of people whohave already contributed to this.Space has precluded inclusionof all examples of good prac-tice, and we apologise for allomissions. The examples citedabove represent only a few ofmany initiatives throughout theworld.

In an ideal world, childrenwith cancer should have accessto the best treatment and pain


WHO Priority Action Plan forNational Cancer Control Programmes

A B C Low Medium HighPreventionEarly diagnosisScreening/therapyPain/palliative care

Resources

PSYCHO

SOCIAL


Dein S (2004) Explanatory models of and attitudes towards cancer in different cultures. Lancet Oncology

5:119-124.

Eden T, Pui C-H, Schrappe M, Tognoni G, and Masera G (2004) All children have a right to fullaccess to treatment for cancer. The Lancet 364:1121-1122.

Eiser C (2004) Children with Cancer: Their Quality of Life. New Jersey: Lawrence Erlbaum Associates.

Harrison S (2005) "He scratch the eye" – a study of Burkitt's lymphoma. Notes from West Africa, 6 April2005. (www.onamercyship.com/2005/04/he-scratch-eye-study-of-burkitts_06.html)

Masera G, Spinetta JJ, D’Angio GJ, Green DM, Marky I, Jankovic M, et al. (1993) SIOP working com-mittee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology 21:627-28.

Masera G, Baez F, Biondi A, et al. (1998a) North-South twinning in paediatric haemato-oncology: theLa Mascota programme, Nicaragua. The Lancet 352:1923-1926.

Masera G, Spinetta JJ, Jankovic M, Ablin AR, Buchwall I, Van Dongen-Melman J, et al. (1998b)Guidelines for a therapeutic alliance between families and staff: a report of the SIOP working committeeon psychosocial issues in pediatric oncology. Medical and Pediatric Oncology 30:183-86.

Masera G, Spinetta JJ, Jankovic M, Ablin AR, D’Angio GJ, Van Dongen-Melman J, et al. (1999)Guidelines for assistance to terminally ill children with cancer: a report of the SIOP working committeeon psychosocial issues in pediatric oncology. Medical and Pediatric Oncology 32:44-48.

Ribeiro RC and Pui C-H (2005) Saving the children – improving childhood cancer treatment in devel-oping countries. New England Journal of Medicine 352:2158-2160.

Sharma DC (2005) Boost to cancer care in India. Lancet Oncology 6:835-837.

Wallace H and Green D (eds.) (2004) Late Effects of Childhood Cancer. London: Arnold.

control and at the same time goto school and take part in nor-mal life as far as possible. Theseideals need to be seen in thecontext of countries wheremany young children have towork rather than go to schooland where parents may be moreconcerned about loss of incomeif the child is unable to workrather than risk of infections.Improving the lot of the childwith cancer therefore dependsas much on improving the lotof children throughout theworld as on making treatment

available. We must hope thatconsideration of the needs ofthe vulnerable child with a life-threatening disease may con-tribute to an improved environ-ment for all children.

This world campaign onchildhood cancer provides awelcome opportunity for theInternational Psycho-OncologySociety (IPOS) to take part inthe global effort towardsimproved care of children withcancer throughout the world.


References


ContributorsDr Paola Pisani heads the Descriptive Epidemiology Group in the International Agency for Research onCancer (IARC), Lyon, France. Dr Eva Steliarova-Foucher is a staff scientist in the group, and Clarisse Hery isa student in the group.

Prof Christine Eiser is Cancer Research UK Professor of Child Health Psychology and heads the Child andFamily Research Group in the Department of Psychology, University of Sheffield, UK.

Dr Jimmie Holland chairs the Department of Psychiatry and Behavioral Sciences at Memorial Sloan-KetteringCancer Center, New York, USA, and is the founding president of the International Psycho-oncology Society(IPOS).

Dr Christoffer Johansen heads the Department of Psychosocial Cancer Research in the Institute of CancerEpidemiology, Copenhagen, Denmark.

Prof Tim Eden is Cancer Research UK Professor of Paediatric Oncology at the University of Manchester,UK, and President of the International Society of Paediatric Oncology (SIOP).

Isabel Mortara is Executive Director of the International Union Against Cancer (UICC).

Childhood Cancer Campaign

Advisory Steering CommitteeDr Franco Cavalli (Chair), Istituto Oncologico della Svizzera ItalianaProf Tim Eden, International Society of Paediatric Oncology (SIOP)Dr Alain Herrerra, Groupe sanofi-aventisProf Jean Lemerle, Groupe franco-africain d’oncologie pédiatriqueDr Ian Magrath, International Network for Cancer Treatment and Research (INCTR)Dr Ching-Hon Pui, St Jude Children’s Research HospitalProf Hélène Sancho-Garnier, Epidaure C.R.L.C. Val d’Aurelle-Paul LamarqueDr Eva Steliarova-Foucher, International Agency for Research on Cancer (IARC)Geoff Thaxter, International Confederation of Childhood Cancer Parent Organisations (ICCCPO)

About UICCThe International Union Against Cancer (UICC) is the only international non-governmental organisation thatis dedicated solely to the global control of cancer. Its vision is of a world where cancer is eliminated as amajor life-threatening disease for future generations. As the world's largest independent, non-profit associationof cancer-fighting organisations, it is a catalyst for responsible dialogue and collective action. With over 270member organisations in more than 80 countries, UICC is a resource for action and a voice for change.

Childhood CancerRising to the challenge

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