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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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