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P sych osocia l R isk s o f C h ron ic H ea lth C on d ition s in C h ild h oo d

87 6

PED IA TR IC S V ol. 92 N o . 6 D ec em b er

1993

an d A do le scen ce

C o m m ittee on C h ild re n W ith D isab ilit ie s an d C om m itte e on P sy ch osoc ia l A sp e cts o f C h ild

an d Fam ily H ea lth

C h ro n ic h ea lth c on d itio n s a ffe ct m an y c h ild re n an d

adolescents . T hese con d itio n s a re illn esses or im p air -

m en ts th a t ar e e xp e c ted to last for an e xte n d e d p e riod

o f t ime an d r eq u ir e m e d ic a l a tte n tion a n d c ar e th a t is

above an d b e yo n d w h a t w ou ld n or m a lly b e expec t ed

for a ch ild or a d o lesc en t o f th e sa m e ag e , e x te n s iv e

ho sp ita liz a tion o r in -hom e health se rv ic es .’ T h e se

con d itio ns inc lud e am ong o th e rs juv en ile rheum a-

to id ar th r itis , a s th m a, c ystic fib r os is , d iab ete s , sp in a

bifida h em op h ilia , se izu re d iso r d er s , n e u r om usc u la r

d isea se a cqu ired im m unod e fic ien cy sy ndrom e an d

congen ita l

h e ar t d ise ase s . A lth ou g h ea c h sp ec ific co n -

d itio n m ay b e r ela tiv ely o r e x tr em e ly r a re , w h e n th e y

are con sid ered to ge th er , m an y ch ild ren an d ad o le s-

ce n ts ar e a ffec te d .

H ea lth con d it ion s m ay b e ch a ra cterized b y th eir du

r t ion

a n d th e ir

s v rity

A lthou gh th ese te rm s ar e o f-

ten lin k ed , th ey re fer to d ifferen t a sp ects o f a h ea lth

co n d ition . A c h r on ic c on d itio n is ge n e r a lly on e th a t

h a s la sted or is e xp e c ted to last m or e th an a de f ined

p e rio d of tim e , u su a lly 3 m on th s o r lon g er . C on d i-

tio ns vary w id e ly in th e ir o n set, c ou rse , a n d d u r atio n .2

S e ve rity r e fer s to th e im p ac t a c on d itio n h a s o n a

ch ild ’s p h y s ica l, in te lle c tu a l , p sy ch o lo g ic a l, o r soc ia l

func t ion ing .3 This im p act m ay occu r a s a resu lt o f p e r-

s is te n t sy m p tom s, r eq u ir e d tre a tm en ts , lim ita tion s o f

ac tiv ity or m o b ility , o r in te r fe r en ce w ith sc h o o l, re c -

rea tion , w ork , an d fam ily ac tiv it ie s .

Curren t estim ate s ar e th a t b e tw e e n 1 0 a n d 2 0 m il-

lion A m erican ch ild ren an d ad o le scen ts h ave som e

typ e o f ch ron ic health co nd itio n o r im p airm en t. M ost

of th ese c on d ition s ar e r ela tive ly mi ld an d in ter fer e

l ittle w ith th e c h ild r en ’s ab ility to p ar tic ip a te in u su a l

ch i ldhood act ivi t ies .4 H o w ev er , a t le a st 1 0% o f ch il-

d re n w ith c h r on ic c on d itio n s , ie , ap p ro x im ate ly 2 % o f

th ose ag ed 0 to 21 y ea rs (1 {18 9}o 2 m ill ion ch ild r e n a n d

ad o le scen ts na tio nw id e h ave a ch ron ic con d ition

se -

v e re en ou gh to h av e an im p ac t on th eir d a ily live s .

R ec e n t m ed ica l an d su r g ic a l ad v an ce s h a ve m ar k -

ed ly d ec rea sed th e m orta lity ra te s fo r ch ild ren and

a d o le sc e n ts w ith ch ro n ic co n d ition s. Whi l e pr e y -

o u s ly m a n y o f th e se in d iv id u a ls d ie d in ch ild h ood or

a d o le sc e n c e, c u r r en t d ata su g ge st th a t a t le ast 90 % ,

ev en th ose w ith severe con d it ion s, su rv ive a t least to

T h is s ta tem e n t has bee n ap pro ve d b y th e C oun c il on C h ild an d A do les cen t

H e a l t h .

Th e

recommenda t ions

in th is

policy sta tem en t d o n o t in d ica te an ex du s iv e

cou rse of t rea tmen t or se r ve as a stan da rd of m ed ica l care . V aria tio ns tak ing

into a cco unt in div id ua l c i rcumstances, m ay b e ap pro pria te .

P E D I A T R IS IS S N 0 03 1 4 00 5). C o p yrig h t © 1 9 9 3 b y th e A m eric an A cad

e my o f P ed ia tr ic s.

young adu ltho od .5 G iv en th is ch an ge in su rv iv al

h ea lth c ar e for th ese ch ild r e n an d a d o lesc en ts m u st b e

e xp an d ed to in c lu d e m or e th an m a n a ge m e n t o f th e ir

ch ro n ic co nd itio n and in tercu rren t a cu te illne sse s . P e-

d ia tric c are sh ou ld a lso max im ize ch ild r e n ’s fu n c -

tio na l ab ilitie s and sen se o f w e ll-b eing the ir h ea lth -

r ela ted q u a lity o f li fe , an d th e ir d ev e lop m e n t in to

hea lth y an d pro duc tiv e ad u lts.

P S Y C H O L O G IC A L R IS K S O F C H R O N IC

COND IT IONS

Ove r

th e p a st

tw o

d ecad e s m u ch re sea rch ha s ex -

amined th e p syc h o log ica l fu n c tion in g of c h ild r en an d

ad o le sce n ts w ith v ar iou s sp ec ific h e a lth co n d ition s.6

Large communi ty -ba s ed s tu d ies7 ’ an d n a tion a l su r -

vey s9 h ave asse ssed th e risk o f em o tion a l behav io ra l

an d ed u c atio n a l d iffic u ltie s ex p e rie n c e d b y ch ild r e n

an d ad o le sce n ts w ith a c h r on ic h ea lth c on d ition . M o st

of th ese s tu d ie s have exam ined p aren ts ’ ra t ing s o f be -

hav io ra l an d em o tio na l s ta tu s and h av e n o t iden tified

specif ic p syc h o log ic a l d istu rb an c e s. T h e se stu d ies

su gg est th a t th e m ajor ity o f ch ild ren a n d ad o le scen ts

w ith ch ron ic h ea lth con d ition s do no t h av e id en tifi-

ab le m en tal heal th b eh av io ra l o r edu ca tio na l d iffi-

cul t ies .

C hild ren a nd th eir

famil ies ar e r e m a rk ab ly r e-

s ilien t in ad ap ting to th e add itio na l s tre sses and

ch a llen g e s p r ese n te d b y a c h r on ic h ea lth c on d itio n .

C hild ren t he ir s ib lin gs an d the ir pa ren ts o ften lea rn

n ew c op in g str a te g ie s an d sh ow e v id en ce o f ex ce p -

tion a l s tr e n g th a n d m aste ry as a r esu lt. N e ve rth ele ss ,

th ese sa m e stu d ie s sh o w th at c h ild re n a n d ad o le s-

cen ts w ith ch ron ic con d ition s d o have ab ou t tw ice th e

p re v a le n c e o f p syc h o log ica l sym p tom s a s c om p ar e d

to ch ild ren w ith ou t a ch ron ic con d it ion . B eh av io ra l o r

em otio n a l sy m p to m s can b e iden tified in ap p ro x i-

m ate ly 10 % o f c h ild re n o ve r a ll an d in a b ou t 20 % o f

children w ith c h r on ic h ea lth co n d ition s.

I t is n o t c le ar w h ich sp ec ific c h a ra cte r is tics o f th e

child o r ad o le sce n t, th e fam ily , a n d th e h e a lth c on -

d itio n itse lf c on trib u te m o st to re sffien ce , to th e

stre sses exp erienced

an d to th e r isk o f d ev elo pin g

secondary e m o tion a l or b e h a v io ra l d iffic u lties . O ne

m ig h t e xp ec t th a t th e m or e se ve r e th e c on d ition is, th e

gr ea ter th e lik e lih o od of p sy ch o lo g ic a l p r ob lem s.

M ost s tu d ie s sh o w su rp ris in g ly little , if an y , r ela tio n -

sh ip b etw een seve rity and p rob lem s w ith p sycho log i-

c a l ad ju stm en t6 ” {17 6}” 1 T h e risk o f p syc h o log ica l a d ju st-

m e n t p r ob lem s see m s to re fle ct m or e th e p re sen ce o f

a c h r on ic c on d ition th a n its se ve r ity .’2 In ge n e ra l, th e

in cre a sed risk o f psycho log ic al p rob lem s a ffe cts ch il-

d re n an d a d o le sc en ts w ith a ll k in d s o f c h r on ic c on -

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AM E RI CAN A CA D EM Y O F PED IA TRICS 87 7

ditio ns w itho ut g reat variation from one to another.

There are characteristic s o f som e conditio ns that do

seem to be asso c iated w ith higher rates of em o tional

o r b e h a v io r a l p r ob lem s. F or e xa m p le c h ild r e n w h o

hav e chronic co nditio ns that affec t the central nerv ous

sy stem espec ially se izure diso rders 7 ’9 and children

and adole scents w ho have an assoc iated long-term

physical d isability m ay be at a higher risk for psy -

cho log ical problem s than children w ith other chro nic

conditions .8 D ependence o n o thers for daily ac tiv itie s

m a y a lso c on t r ib u t e t o t h e ir r isk o f p sy ch osoc ia l d ys-

function . S pec ific health co nditio ns m ay cause spe -

cific co ping issues fo r children and ado le scents such

a s d r iv in g w ith ep ilep sy issu es in vo lv in g sexu a lit y

fo r t h o se w it h cy st ic fib r os is o r t h e soc ia l s t igm a o f

in fla m m a t o r y b ow e l d isea se. H o w e v er c h ild r e n a n d

adolescents w ith   ny type of chronic condition w ill

h a ve u n iq u e p syc h o log ic a l s t r esses in a d d it ion t o

t h o se fa c ed b y a ll c h ild r en .

I f n e it h er t h e se ve r it y n or t h e

type o f co ndition ad-

equate ly ex plains the risk of psycho lo g ical pro blem s

w h a t fa m ily a n d ch ild ch a r a c t e r is t ic s m ig h t p r ed ict

this risk? Children’s inte llig ence and tem peram ent

a p p ea r t o co n t r ib u t e t o t h eir a b ilit y t o a d a p t t o t h e

ex t r a s t r esse s o f t h e illn ess .’3 ” 4 P a r en t s ’ se lf-es t e em

m en t a l h e a lt h soc ia l su p p o r t n et w o r k a n d b e lie fs

a b o u t h e a lth c a r e a ll h a v e a n im p a ct on t h e su cc ess o f

children’s adaptatio n 6’9 ’13 ’15 as do es the co hesiveness

flexib ifity a n d e ffe ct iv en ess o f sh a r e d c om m u n ica -

t ion

within

t h e fa m ily . C u r r en t r e se a r c h e ffo r t s w ill

like ly identify additio nal facto rs asso ciated w ith in-

creased risks fo r psy cho lo g ical pro blem s and fac to rs

t h a t fo st e r ch ild r en ’s r e si lien ce . T h is in fo r m at io n

wi l l

p r o v id e p e d ia t r ic ia n s w it h m o r e gu id a n c e r eg a r d in g

t h e p r e ve n t io n a n d id en t ifica t ion o f p syc h o log ica l d if-

f icu lt ie s w h en w o r k in g w ith fa m ilie s w h o se ch ild r en

h a ve ch r o n ic h ea lt h c on d it ion s .

R E C O M M E N D A T I O N S F O R P E D I A T R I C C A R E

Primary ca r e p e d ia t r ic ia n s h a v e a c en t r a l r o le in

p r ov id in g sc r ee n in g p re ve n t iv e a nd su p p or tive se r -

v ice s t o c h ild r e n a n d a d o le sce n t s w ith c h r o n ic h e a lt h

conditio ns and the ir fam ilie s .

T h e u su a l p e d ia t r ic m o d e l o f a sse ssin g c h ild r e n ’s

functioning

in their fam ily in schoo l and w ith peers

a p p lie s t o t h ose w it h a c h r on ic h ea lt h co n d it ion j u st

as it do es to all o ther children and adole scents . Pe-

diatricians w ho take a co m prehensive a n d fa m ily -

b a sed v iew o f t h e b r o a d clin ic a l im p lic a t io n s o f c h ild -

h o od c h r on ic c on d it io n s w ill r e co gn ize t h e ir c r it ic a l

r o le in d im in ish in g t h e ch ild ’s r isk o f p sy ch o lo g ic a l

a d j u st m en t p r ob lem s. I d en t i fy in g ch i ld r en a n d fa m i-

lie s a t r isk fo r c op in g p o or ly w it h t h e st r e ss o f c h r on ic

h e a lt h p r o b le m s; a ss is t in g fa m ilies t o p r ev e n t p sy ch o-

log ic a l so cia l a n d b eh a v io r a l c om plica t ion s; a n d

se a r c h in g fo r e a r ly ev id e n c e of su c h p r o b le m s sh ou ld

b e p a r t o f r e g u la r p e d ia t r ic c a r e . M ost o f t h e s t r e ssfu l

is su es fo r fa m ilies w it h ch ild r en w it h ch r o n ic co n d i-

tions can be antic ipated and dealt w ith prev entiv ely

t h r o u g h e d u c a t ion a n d su p p o r t iv e c ou n se lin g se r -

v ic es p r o v id e d a p p r o p r ia t e ly b y t h e p e d ia t r ic ia n . I t

m ay be appropriate for so m e children and ado le s-

c e n t s to b e r e fer r ed fo r m e n t a l h e a lt h se r v ic e s.

Pediatric ians should deve lo p links w ith local

sc h o o l s an d

o t h e r a ge n c ie s t h a t p r o v id e su p p or t a n d

serv ices for children and fam ilie s. S choo ls play a cen-

tral ro le in the education and soc ialization o f all chil-

dren and often have resources that he lp w ith the pre -

v entio n identification and m anag em ent of

psycho soc ial problem s in the ir students including

tho se w ith health im pairm ents .’6 B ecause increasing

num bers o f children w ith chronic conditions are in

sch o o l fr o m t h e a g e of 3 yea r s sch oo ls a r e a k ey r e-

so u r ce in t h e ir lon g -t er m m a n a gem en t . T h ey fr e -

quently pro v ide m ajor ass is tance to fam ilie s and to

pediatric ians in dim inishing the psycho soc ial risks

of

c hro nic c onditio ns .

P ed ia t r ic ia n s ca n a lso h e lp fa m il ies b y en su r in g

w el l -coor d in a t ed m ed ica l ca r e a n d effic ien t a n d ef-

fective com m unication w ith the m any profe ss io nal

prov iders o f care invo lved w ith the fam ily . They can

h e lp t o e n su r e t h a t fa m ilies h a ve a c c ess t o loc a l su p -

po rtiv e netw orks

fo r p a r e n t s a n d fo r c h ild r e n . A lso

pediatricians sho uld pro v ide appro priate inform a-

tio n abo ut the indiv idual’s ifine ss and it s m an ag e-

m en t r ecr ea t io n a l op p or tu n it ies a n d m ec h a n ism s t o

a s sist w ith th e fin a n c ia l st r a in a ssoc ia t ed w it h ch r on ic

h ealth c on di tio ns .1 7

T h e p r ev en t ion of p syc h o soc ia l c om p lic a t io n s o f

childho od chronic ifine ss w ill be m et b es t b y a fa m ily -

an d co m m unity-centered approach in w hich the pe-

diatrician assesse s the skills and needs of the child

and fam ily participates in planning and im plem ent-

ing

c om pr eh en siv e in t er v en t ion p r og r a m s a n d su p -

po rts fam ilie s in the com plex task o f rais ing children

and adole scents w ith chro nic co nditio ns .17

C O M M I T F E E O N C H I L DR EN

WffH D I S A B I L IT I E S 1993 io 1994

Jam es M . Perrin M D Chair

G er ald E ren be r g M D

Ruth K . K am iner M D

Robert L a C am era M D

Jo hn A . N ackashi M D

Jo hn R. P o n c h e r M D

V irg inia R andall M D

Renee

C . W a ch teb M D

P hilip R . Z ir in g M D

L ia ison R ep r es en ta tives

C on n ie G ar ne r R N M SN E dD U S D e p t o f

E d u ca t ion P r og r am s

R o ss H ay s M D A m erican A cadem y o f Phy s ical

M ed icin e a nd R eh ab ifit a t ion

Joseph

C . H ollow ell M D C en te r s fo r D ise a se

Contro l and Prev ention Center fo r

Env iro nm ental H ealth and Injury Co ntro l

Section Liaison

H arry G ew ante r M D S ectio n o n R heum ato lo gy

C O M M r I - r E E

O N P SY CH O SO C IA L As P E CT S O F C H IL D A N D

Fumx H L m i 1 9 9 3

TO

1994

M artin T. S te in M D C hair

W illiam B . Carey M D

S tanford B . Friedm an MD

M ich ae l S . J ellin ek M D

Lucy O sborn M D

Ellen C. Perrin M D

D ebo rah To ichin M D

M ar k L . W oir aich M D

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8 78 P S Y C H O S O C IA L

R ISKS

O F C H R O N IC H E A L T H C O N D I T I O N S

L ia iso n R ep re se nta tiv e

M erv yn Fox MD C anad ian Paed ia tric

Society

Consu l t an t

George

J . C o h e n M D N a ti o na l

Consor t ium

fo r

C h ild M en tal H ealth

Serv ices

R E F E R E N C E S

1 . P le as IS P in k e rto n P .

C h ro n ic C h i ld h o o d D is o r d e r P r o m ot in g Pa t t e r n s o f

Adjustnent

L o n d o n E n g la n d : K im pto n ; 1 9 7 5

2. P err in EC

N e w a c h e c k

P W P l e a s IS e t a l. Is s u e s in v o lv e d in th e d e fi-

m ifon a nd c la s s if ic a t io n o f c h r o n i c h e alt h c o nd it io n s . Pediatrics 1 9 9 3 ; 9 1 :

787-793

3 . S t e in R E G o rt m ak e r S L P e rr in E C e t a l . S ev e r it y o f illn e s s : o n c e p t s

a nd m e as u re m e n ts .

L ancet

1 9 8 7 ; 2 : 1 5 0 6 - 1 5 0 9

4. G o r tm a k e r S L S a p p e n f ie l d W . C hro nic c hild ho od d is o rd e rs : p re v ale n ce

a n d im p ac t. Pediatr C l in N o r t h A m 1 9 8 4 3 1 : 3 1 8

5 . N e w a c h e c k P W . A d o le s c e n t s w it h s p e c ia l h e a lth n e e d s : p r e v a l e n c e

s e v e r i t y

a n d a c c es s t o h e alt h s e rv ic e s .

Pediatrics

1 9 8 9 8 4 : 8 7 2 - 8 8 1

6 .

M ac L e an W E Pe rrin J M G ortm ak e r

5 Pierre C B .

P sy c ho lo g ic al a d ju s t-

m e n t o f c h ild re n with a s t h m a : e f f e c t s o f illn es s s ev erity a n d re ce nt

s tre ss fu l life e ve nts . I Pediatr

Psychol

1 9 9 2 ; 1 7 : 1 5 9 1 7 1

7 . P le a s IS R o g h m a n n K J . C h ro n ic illn e s s an d its c o n s e qu e nc e s: o b s e rv a -

tio n s b a s e d o n

t h r e e

e p id em io lo gic s urv ey s . I Pediatr 1 9 7 1 ; 7 9 : 3 5 1 3 5 9

8. C a d m a n D Boy l e M S z a t m a r i P . Of f o r d DR . C h r o n i c i l l n e s s d isab i l i t y

a n d m en t a l a n d s oc ia l w ell b e in g : fin d in g s o f t h e O nta rio C hild

He a l t h

S t u d y .

Pediatrics

1 9 8 7 ; 7 9 : 8 0 5 - 8 1 3

9. G o r t m a k e r S L W alk e r D K W e it z m an M

Sobol A M. C hro n ic

c o n d i

tio ns s oc io ec on om ic ris ks a n d b e ha v io ra l p ro b le m s in ch i ld ren an d

adolescen ts.

Pediatrics 199085267-276

1 0. M c A n a r n e y

E R , P le ss

IS S a tte rw h ite B e t a l. P s yc ho lo gic al p ro b le m s o f

children

w ith c hro nic

ju v en ile a rth ritis . Pediatrics

1 9 7 4 5 3 : 5 2 3 - 5 2 8

11 . P e rrin J M

M a c le a n W E

P err in EC .

P a re n ta l p e rc e p tio n s

o f h ea lt h s ta t u s

a n d p s y c h o lo g ic a d ju s t m e n t o f c h ild re n w it h a s t h m a .

Pediatrics

1 9 8 9 ;

8 3 : 2 6 - 3 0

1 2 . H o b b s N P e rrin J M k e ys H T .

C hr o nic al l y i l l C hildren and T he ir F am ilies

S an

F ra nc is co C A : J os s ey -B as s ; 1 98 5

1 3 . P e rr in E C A y ou b C C W ille tt J B . In t h e e y e s o f t h e b e h o ld e r: fa m ily a n d

m ate rn a l in flu e n c e s o n p e rc e p t io n s

o f

a d j u s tm e n t

o f c h ild re n

with

c hr on ic i l lness.

J

De v   ehav   edia tr

1 9 9 3 ; 1 4 : 9 4 - 1 0 5

1 4. v a m i J w Rubenfeld LA

T a l b o t

D

S eto g u c h i Y . F a m ily fu n c tio n in g

te m pe ra me nt a nd p s yc h olo g ic a da p ta tio n in c h ild re n with congenita l

o r a c qu ir ed l imb def ic iencies. Pediatr ics 198984:323-330

1 5 . S te in R E J es s o p D J . R e la t io ns hip b et w ee n h e alt h s ta t u s a n d p s y c ho lo gi

c a l a d ju s tm e n t a m o n g c h ild re n w ith c h ro n ic condit ions.

Pediatrics

1 9 8 4 ;

7 3 : 1 6 9 - 1 7 4

1 6 . A m e ric a n A c a d e m y o f P e d i a t r i c s C o m m i f t e e o n C h ild re n W it h D is

a b ili t ie s a nd C o m m i t t e e o n S ch o o l H e a lth . C h ild re n w ith h e a lth im pa ir-

me n t s in s c ho o ls . P e d i a t r i c s 1 9 9 0 8 6 : 6 3 6 - 6 3 8

1 7 . B re w er E J M c P h e rs on M Ma g ra b P R H utc hin s I/L . F a m ily -c en te re d

c o m m un ity -b a s e d c o o rd in a te d c a re fo r c h ild re n w it h s p e c ia lh e a lt h c are

n e e d s .

Pediatrics 198983:1055-1060

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