Health Link Educational Issues - Children's Oncology Group

Health Link

Healthy living after treatment for childhood cancer

Educational Issues Version 3.0 - 10/08

E d uc a tio na l Issue s Fo llo w ing Tre a tm e nt fo r C hild ho o d C a nc e r

Tre a t m e n t fo r c a n c e r d u rin g c h ild h o o d o r a d o le s c e n c e m a y a ffe c t e d u c a t io n a l p ro g ress d u e to p ro lo n g ed ab sen c es o r red u c ed en erg y levels th at freq u en tly o c c u r d u rin g treatm en t. In ad d itio n , so m e typ es o f c an c er m ay req u ire th erap y to c o n tro l o r p re v e n t s p re a d o f t h e d is e a s e t o t h e b ra in a n d / o r s p in a l c o rd (c e n t ra l n e rv o u s s y s t e m ). T h is t h e ra p y c a n s o m e t im e s a ff e c t m e m o ry a n d le a r n in g a b ilit ie s . P a re n t s an d teac h ers sh o u ld b e aw are o f p o ten tial ed u c atio n al p ro b lem s th at m ay b e related to c an c er treatm en t so th at c h ild ren an d teen s at risk c an b e w atc h ed c lo sely an d g iven ex tra h elp if th e n eed arises.

W ha t inc re a se s the risk o f e d uc a tio na l p ro b le m s?

Fac to rs th at m ay p lac e c h ild ren an d teen s at in c reased risk fo r d iffic u lties in sc h o o l in c lu d e:

D iag n o sis o f c an c er at a very yo u n g ag e N u m ero u s o r p ro lo n g ed sc h o o l ab sen c es A h isto ry o f learn in g p ro b lem s b efo re b ein g d iag n o sed w ith c an c er C an c er treatm en t th at resu lts in red u c ed en erg y levels C an c er treatm en t th at affec ts h earin g o r visio n C an c er treatm en t th at resu lts in p h ysic al d isab ilities C a n c e r t h e ra p y t h a t in c lu d e s t re a t m e n t t o t h e c e n t ra l n e rv o u s s y s t e m (s e e b e lo w ).

A re c hild re n a nd te e ns w ith c e rta in typ e s o f c a nc e r a t hig he r risk o f d e ve lo p ing e d uc a tio na l d iffic ultie s?

Ye s , c h ild re n a n d t e e n s w it h t h e t y p e s o f c a n c e r lis t e d b e lo w a re m o re lik e ly t o h a v e rec eived treatm en ts th at m ay affec t learn in g an d m em o ry. S in c e treatm en ts fo r th ese typ es o f c an c er vary w id ely, n o t everyo n e w h o w as treated fo r th ese c an c ers is at in c reased risk .

B rain tu m o rs Tu m o rs in v o lv in g t h e e y e o r e a r A c u t e ly m p h o b la s t ic le u k e m ia (A L L ) N o n - H o d g k in 's ly m p h o m a (N H L )

W ha t typ e s o f tre a tm e nt p la c e c hild re n a nd te e ns a t hig he r risk fo r le a rning a nd m e m o ry p ro b le m s?

M e t h o t re x a t e ? if g iv e n in h ig h d o s e s in t ra v e n o u s ly (IV ) o r in je c t e d in t o t h e s p in a l f lu id (in t ra t h e c a l ? IT o r in t ra o m m a y a - IO )

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Health Link

Healthy living after treatment for childhood cancer

Educational Issues Version 3.0 - 10/08

C y t a ra b in e ? if g iv e n in h ig h d o s e s in t ra v e n o u s ly (IV ) S u rg ery in vo lvin g th e b rain R ad iatio n to an y o f th e fo llo w in g areas:

- B ra in (c ra n ia l) - E a r/ in f ra t e m p o ra l re g io n (m id f a c ia l a re a b e h in d t h e c h e e k b o n e s ) - To t a l b o d y ir r a d ia t io n (T B I) C is p la t in o r c a rb o p la t in (m a y a ff e c t h e a rin g )

W ha t te sting is re c o m m e nd e d ?

A n y yo un g p erso n w ho has had an y o f th e ab o ve c anc er treatm en ts, o r w h o is h avin g d iffic u lties in sc h o o l, sh o u ld u n d erg o a sp ec ialized evalu atio n b y a p ed iatric p s y c h o lo g is t (n e u ro p s y c h o lo g ic a l t e s t in g ) a t t h e t im e o f e n t ry in t o lo n g - t e rm f o llo w - u p . Th is typ e o f testin g w ill m easu re IQ an d sc h o o l b ased sk ills, alo n g w ith m o re d etailed in fo rm atio n ab o u t h o w th e c h ild p ro c esses an d o rg an izes in fo rm atio n .

Even if th e in itial n eu ro p syc h o lo g ic al evalu atio n is n o rm al, it is im p o rtan t fo r p aren ts an d teac h ers to rem ain w atc h fu l. Fu rth er n eu ro p syc h o lo g ic al evalu atio n s m ay b e n ec essary if th e c h ild o r teen b eg in s h avin g tro u b le in sc h o o l o r d evelo p s an y o f th e p ro b lem s listed b elo w . In ad d itio n , rep eat testin g is o ften rec o m m en d ed at tim es w h en a c a d e m ic c h a lle n g e s a re m o re lik e ly t o o c c u r, s u c h a s a t e n t r y in t o e le m e n t a ry s c h o o l, m id d le sc h o o l, h ig h sc h o o l, an d d u rin g p re- c o lleg e p lan n in g .

W ha t le a rning p ro b le m s m a y o c c ur?

Th e b rain is a very c o m p lex stru c tu re th at c o n tin u es to g ro w an d d evelo p th ro u g h o u t c h ild h o o d an d ad o lesc en c e. S o m e p ro b lem s m ay n o t b ec o m e ap p aren t u n til years after th erap y is c o m p leted . C o m m o n p ro b lem s areas in c lu d e:

H an d w ritin g S p ellin g R ead in g Vo c ab u lary M ath C o n c en tratio n A tten tio n sp an A b ility to c o m p lete task s o n tim e M em ory P ro c e s s in g (a b ilit y t o c o m p le t e a s s ig n m e n t s t h a t re q u ire m u lt ip le s t e p s ) P lan n in g

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Healthy living after treatment for childhood cancer

Educational Issues Version 3.0 - 10/08

O rg an izatio n P ro b lem - so lvin g S o c ial sk ills

W ha t c a n b e d o ne to he lp w ith le a rning p ro b le m s?

If a p ro b lem is id en tified , sp ec ial ac c o m m o d atio n s o r servic es c an b e req u ested to h elp m ax im ize th e s tu d en t's learn in g p o ten tial. Th e firs t s tep is u s u ally to s c h ed u le a m eetin g w ith th e sc h o o l in o rd er to d evelo p a sp ec ialized ed u c atio n al p lan . Ex am p les o f strateg ies th at are o ften h elp fu l fo r c h ild ren an d teen s w ith ed u c atio n al p ro b lem s related to c an c er treatm en t in c lu d e:

S eatin g n ear th e fro n t o f th e c lassro o m M in im izin g th e am o u n t o f w ritten w o rk req u ired U se o f tap e- rec o rd ed tex tb o o k s an d lec tu res U se o f a c o m p u ter k eyb o ard in stead o f h an d w ritin g U se o f a c alc u lato r fo r m ath M o d if ic a t io n o f t e s t re q u ire m e n t s (e x t ra t im e , o ra l in s t e a d o f w rit t e n e x a m s ) A ssig n m en t o f a c lassro o m aid e Ex tra h elp w ith m ath , sp ellin g , read in g , an d o rg an izatio n al sk ills A c c ess to an elevato r Ex tra tim e fo r tran sitio n b etw een c lasses D u p lic ate set o f tex tb o o k s to k eep at h o m e

W ha t la w s p ro te c t the rig hts o f stud e nts w ho ha ve und e rg o ne tre a tm e nt fo r cancer?

In th e U n ited S tates, th ere are th ree p u b lic law s th at p ro tec t th e rig h ts o f stu d en ts w ith ed u c atio n al p ro b lem s related to c an c er treatm en t. Th ese law s are:

T he R e ha b ilita tio n Ac t o f 1 9 7 3 ? S e c tio n 5 0 4 Th is leg islatio n p ro vid es ac c o m m o d atio n s fo r stu d en ts w ith a " p h ysic al o r m en tal im p airm en t w h ic h su b stan tially lim its o n e o r m o re m ajo r life ac tivities," o r stu d en ts w ho h ave " a rec o rd o f su c h im p airm en t" , o r w ho are " p erc eived as h avin g su c h a n im p a irm e n t " (T h e R e h a b ilit a t io n A c t , 1 9 7 3 ). Q u a lif y in g c o n d it io n s in c lu d e c h ro n ic illn e s s e s s u c h a s c a n c e r, a s w e ll a s m a n y o t h e r d is a b ilit ie s , in c lu d in g h e a rin g p ro b le m s , visio n p ro b lem s, learn in g d isab ilities, sp eec h d iso rd ers, an d o rth o p ed ic h an d ic ap s. A ll c h ild h o o d c an c er su rvivo rs in th e U n ited S tates are elig ib le fo r ac c o m m o d atio n s u n d er t h is la w , a n d a ll e d u c a t io n a l in s t it u t io n s re c e iv in g f e d e ra l f u n d in g (in c lu d in g c o lle g e s a n d u n iversities) are req u ired to c o m p ly. A c c o m m o d atio n s m ay in c lu d e m o d ific atio n s in th e

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Health Link

Healthy living after treatment for childhood cancer

Educational Issues Version 3.0 - 10/08

c u rric u lu m (s u c h a s a llo w in g t h e u s e o f a c a lc u la t o r a n d e x t ra t im e f o r a s s ig n m e n t s o r t e s t - t a k in g ) a n d t h e e n v iro n m e n t (s u c h a s s e a t in g n e a r t h e f ro n t o f t h e c la s s ro o m o r a llo w in g e x t ra t im e b e t w e e n c la s s e s ).

T h e In d ivid u a ls w ith D isa b ilitie s E d u c a tio n A c t (ID E A ) T h e ID E A le g is la t io n (P L 1 0 5 - 1 7 ) re q u ire s t h a t p u b lic s c h o o ls p ro v id e " f re e a n d ap p ro p riate ed u c atio n in th e least restric tive en viro n m en t" fo r d isab led stu d en ts b etw een th e ag es o f 3 an d 2 1 years o f ag e. In o rd er to q u alify fo r sp ec ial ed u c atio n servic es u n d er ID EA , th e stu d en t m u st m eet q u alific atio n s u n d er at least o n e d isab ility o u tlin ed in th e law - th o se th at m o st c o m m o n ly ap p ly to stu d en ts treated fo r c an c er in c lu d e " sp ec ific learn in g d isab ility," " trau m atic b rain in ju ry," o r " o th er h ealth im p airm en t." In o rd er to ac c ess servic es u n d er th e ID EA leg islatio n , p aren ts m u st in itiate th e p ro c ess b y req u estin g th at th e stu d en t b e evalu ated fo r an " In d ivid u alized E d u c a t io n P la n " o r IE P. T h e s t u d e n t w ill t h e n u n d e rg o a n a s s e s s m e n t p ro c e s s t o d eterm in e w h at assistan c e is req u ired . A c o n feren c e is th en h eld to d isc u ss th e resu lts o f th e evalu atio n an d , if th e stu d en t q u alifies, to d eterm in e an in d ivid u alized p lan to m eet th e id en tified sp ec ialized ed u c atio n al n eed s. S ervic es availab le u n d er th e ID E A le g is la t io n in c lu d e t u t o rin g , s p e c ia liz e d c la s s ro o m p la c e m e n t s (s u c h a s a re s o u rc e ro o m ), p s y c h o lo g ic a l s e rv ic e s , a d a p t iv e p h y s ic a l e d u c a t io n , p h y s ic a l, o c c u p atio n al an d sp eec h / lan g u ag e th erap y, an d tran sp o rtatio n servic es. A ll servic es a n d a c c o m m o d a t io n s re q u ire d b y t h e s t u d e n t s h o u ld b e s p e c if ie d in t h e IE P (t h e w rit t e n d o c u m e n t d e s c rib in g t h e s p e c ia l e d u c a t io n p ro g ra m ). T h e IE P s h o u ld b e review ed an d u p d ated o n an an n u al b asis to assu re th at it c o n tin u es to m eet th e s tu d en t's ed u c atio n al n eed s .

T h e A m e ric a ns w ith D isa b ilitie s A c t (A D A ) T h e A D A la w (P L 1 0 1 - 3 3 6 ) p ro t e c t s a g a in s t d is c rim in a t io n in e m p lo y m e n t , tra n s p o rtatio n , c o m m u n ic atio n , g o vern m en t an d p u b lic ac c o m m o d atio n s fo r p eo p le w ith d isab ilities. It g u aran tees eq u al ac c ess to p u b lic sp ac es, even t, an d o p p o rtu n ities an d m ay b e p artic u larly h elp fu l fo r stu d en ts seek in g h ig h er ed u c atio n o r em p lo ym en t.

W he re c a n I g e t m o re info rm a tio n?

A d d itio n al in fo rm atio n is availab le fro m th e N atio n al In fo rm atio n C en ter fo r C h ild ren an d Yo u t h w it h D is a b ilit ie s (p h o n e : 1 - 8 0 0 - 6 9 5 - 0 2 8 5 ; w e b s it e : w w w .n ic h c y.o rg ).

C an d lelig h ters C h ild h o o d C an c er Fo u n d atio n , fo r th e free p u b lic atio n : Ed uc ating the C h ild w it h C a n c e r, a G u id e f o r P a r e n t s a n d Te a c h e rs (p h o n e : 1 - 8 0 0 - 3 6 6 - 2 2 2 3 ; w e b s it e : w w w .c an d lelig h ters.o rg .)

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Healthy living after treatment for childhood cancer

Educational Issues Version 3.0 - 10/08

W rit t e n b y W e n d y L a n d ie r, R N , M S N , C P N P, C P O N ? , S u r v iv o rs h ip C lin ic , C it y o f H o p e N a t io n a l

M e d ic a l C e n t e r, D u a rt e , C A .

Review ed b y D eb ra L. Fried m an M D , M elissa M . H ud so n M D , J ulie B latt M D , J o an D arling

P hD , and S c o tt H aw kins LM S W.

A d d itio n al h ealth in fo rm atio n fo r c h ild h o o d c an c er su rvivo rs is availab le at

w w w .su rvivo rsh ip g u id elin es.o rg

Note: Th ro u g h o u t th is H e alth L in ks s e rie s , th e te rm " c h ild h o o d c a n c e r" is u s e d to d e s ig n a te p e d ia t ric c a n c e rs t h a t m a y

o c c u r d u rin g c h ild h o o d , ad o lesc en c e, o r yo u n g ad u lth o o d . H ealth Links are d esig n ed to p ro vid e h ealth in fo rm atio n fo r s u rv iv o rs o f p e d ia t ric c a n c e r, re g a rd le s s o f w h e t h e r t h e c a n c e r o c c u r re d d u r in g c h ild h o o d , a d o le s c e n c e , o r y o u n g ad u lth o o d .

Disclaimer and Notice of Proprietary Rights IIntroduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying "Health Links" were developed by the Children's Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children's Oncology Group's Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children's Oncology Group relating to late effects of cancer treatment and care or containing the title " Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title " Health Link" , whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as " Informational Content" . All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.

To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children's Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children's Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children's Oncology Group, or affiliated party or member of the Children's Oncology Group. No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children's Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children's Oncology Group and Related Parties: No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) " Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children's Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children's Oncology Group secure all copyright and intellectual property rights for the benefit of the Children's Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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