F irst the g o o d ne ws 90% o f Se rio usly I ll Childre n b e - - PowerPoint PPT Presentation

He a lth Ca re T ra nsitio n

F lo rida Asso c ia tio n o f Childre n’ s Ho spita ls

Da vid Wo o d , MD, MPH

Oc to b e r 3, 2013

www.ja xha ts.ufl.e du

F irst the g o o d ne ws…

90% o f Se rio usly I ll Childre n b e c o me a dults

T he ba d ne ws: T he y ha ve to g o throug h this to g e t the re !

Sickle Cell Disease

10 20 30 40 50 60 1970 1980 1990 2000 Life Expectancy

Platt OS N Engl J Med 1994;330:1639-44. http://www.nlm.nih.gov/medlineplus/ency/article/000527.htm

Changing E pide miology of Dise ase s Ar ising in Childhood

• Co ng e nita l He a rt Dise a se

 >1,000,000 a dults in the U.S. ha ve CHD

• 419,000 with mo de ra te to se ve re c o mple xity
• At risk fo r re -o pe ra tio n, pre ma ture mo rta lity

 Mo re a dults tha n c hildre n

• Ce re b ra l Pa lsy

 I

n US ~800,000 pe o ple ha ve CP

 >400,000 a re a dults

Murphy KP, et Al. Dev Med Child Neural 1995;37:1075–84. United Cerebral Palsy website (www.ucp.org/ucp_generaldoc.cfm/1/9/37/37-37/447)

Why is HCT Impor tant?

• Witho ut suppo rt during tra nsitio n yo uth ma y:

 L

• se o f insura nc e

 Po o r c o nne c tio n to the a dult he a lth c a re syste m  Ha ve de c re a se d a dhe re nc e with me dic ine , se lf-

c a re

 I

nc re a se d E R visits, ho spita liza tio ns

 E

xpe rie nc e sho rt te rm de te rio ra tio n in he a lth a nd wo rse lo ng te rm o ut c o me s

Institute of Medicine, 2007; Boyle et al. 2001; Callahan et al. 2001; Betz 2003; Freyer et al. 2008; Tuchman et al. 2008), Watson 2000; Annunziato et al. 2007; Gurvitz et al. 2007; Dugueperouxet

• al. 2008; White 2002; Williams 2009.

“When we left pediatric care it was as

if someone flipped the switch and turned the lights off.”

• -pa re nt o f c hild with de ve lo pme nta l disa b ility

“It’s like taking 18 years to build a fine canoe and then riding it over a waterfall.”

• -Jerry Bridgham, 2013

T r ansfe r

• f Car

e Disc re te e ve nt, physic al transfe r fro m a pe dia tric to a n a dult pro vide r; sho uld o c c ur

be twe e n a g e s 18-21+

T r ansition Pr e par ation I nc re a se d re spo nsib ility fo r he alth c are se lf-manag e me nt; unde rsta nding a nd pla nning fo r c ha ng e s in he a lth ne e ds, insura nc e , a nd pro vide rs in a dultho o d; sho uld o c c ur

ac r

• ss a g e s 12-21+

T he “purpo se ful, pla nne d mo ve me nt

• f a d o le sc e nts a nd

yo ung a d ults with c hro nic physic a l a nd me d ic a l c o nd itio ns fro m c hild -c e nte re d to a d ult-o rie nte d he a lth c a re syste ms.”

Blum, 1993 “T he g o a l o f a pla nne d he a lth c a re tra nsitio n is to ma ximize life lo ng func tio ning a nd we ll-b e ing fo r a ll yo uth, inc luding tho se who ha ve spe c ia l he a lth c a re ne e ds a nd tho se who do no t.”

AAP/ACP/AAF P, 2011

Health Care Transition (HCT)

He a lth Ca re T ra nsitio n

• Ma na g e the ir o wn he a lth
• Dise a se se lf-ma na g e me nt
• Pre ve ntio n, sub sta nc e use , sa fe ty, se xua lity
• Appro pria te ly a c c e ss a dult prima ry c a re ,

spe c ia lists, the ra pie s, e q uipme nt, supplie s, e tc .

• Ac c e ss to a de q ua te a nd c o ntinuo us he a lth

insura nc e

• I

mple me nt e duc a tio n a nd vo c a tio na l g o a ls

Sc al e t al. Pe diatric s 2002; L

• tste in DS, e t al., J Ado l Me d. 2008;43:23-29

Go a ls fo r T ra nsitio n

Me dic al Home & Car e Coor dination

Asse ssme nt and

Coor dination Infor mation & Re fe r r al

Pe diatr ic Car e Syste m

Population Mode l of HCT

Adult Car e Syste m

Inc r e asing c omple xity

• f YSHCN

E stima te s o f Ne e d fo r T ra nsitio n Se rvic e s

 F

lo rida

 1.7 M yo ung a dults 18-24  85,000 Yo uth with sig nific a nt physic a l o r

me nta l he a lth c a re c o nditio ns  No rthc e ntra l Re g io n F

lo rida

 257,000 yo ung a dults 18-24 ye a rs o f a g e  ~12,500 Yo uth with sig nific a nt physic a l o r

me nta l he a lth c a re c o nditio ns

Ne e d fo r Se rvic e s—SSI E nro llme nt Ag e s 18-26

Re gion of F lor ida Numbe r

• f Young Adults on SSI

No rthwe st 2,342 Big Be nd 1,325 No rth Ce ntra l 5,840 T a mpa Ba y 4,465 Ce ntra l F lo rida 2,870 So uthwe st 2,456 So uthe a st 3,190 So uth F lo rida 4,223

Ho w Are We Do ing ?

• Na tio na l Surve y o f Childre n with Spe c ia l He a lth

Ca re Ne e ds (e ve ry 4 ye a rs)

 Sta te a nd Na tio na l L

e ve l Re po rting

• 4 q ue stio ns —a ntic ipa to ry g uida nc e fo r YSHCN

a g e s 12-17 a b o ut:

 Cha ng ing he a lth ne e ds in a dultho o d  T

ra nsitio n to a dult he a lth pro vide r

 I

nsura nc e ne e ds into a dultho o d

 Yo uth e nc o ura g e d to ta ke inc re a se d re spo nsib ility fo r

c a re

• Sta te L

e ve l—37% (na tio na l 40%)

T ra nsitio n Pre pa ra tio n

F L ORIDA CHIL DRE N’S HOSPIT AL S SURVE Y RE SUL T S

T ra nsitio n Pro g ra ms

• Do e s yo ur ho spita l ha ve a n a g e limit?

 Ye s (10)  No (3)

• Do e s yo ur ho spita ls ha ve a HCT

pro g ra m?

 Ye s (5)  No (5)

HCT Pro g ra m De sc riptio ns

• Mo st c o mmo n spe c ia ltie s invo lve d

 Ca rdio lo g y (3)  CF

(3)

 Sic kle Ce ll (4)  I

DD/ CP (3)

 Ca nc e r Survivo r (2)

• E

xte nsio n o f Co mple x Ca re Clinic (4)

 Me dic a l Ho me Mo de l

• T

ra nsitio n pro b le ms ide ntifie d b y in- pa tie nt se rvic e s

De pa rtme nta l Re spo nsib ility

• Nursing —2
• So c ia l Wo rk—3
• I

ndividua l Spe c ia lty Pro g ra ms (5)

• Othe rs

 CMS  Prima ry Ca re / Me dic a l Ho me

Outre a c h

• T

ra nsitio n Pre pa ra tio n Outre a c h a nd E duc a tio n

 Pe dia tric Pro vide rs (3)  F

a milie s (3)

 I

npa tie nt se rvic e s e duc a tio n(3)

 Outpa tie nt c linic fo r me dic a l/ so c ia lly

c o mple x (2)

• Outre a c h to a nd Re c ruitme nt o f a dult

pro vide rs (4)

Disc ussio ns with a dult syste ms

• Disc ussio ns with Adult Syste ms

 8 Ho spita ls  Va ria b le re spo nse ; spe c ia lty o rie nte d

• I

nte re st b y a dult syste m

 Co st sa ving pro g ra m (3)  Re ve nue lo sing (3)  Qua lity o f Ca re (5)

• ACO? Only 1 ye s

Pla nning / De ve lo pme nt o f HCT Pro g ra ms

• 7 Ho spita ls Ac tive ly Pla nning

 Pla nning pro c e ss is q uite dive rse with le a de rship

fro m nursing , MD c ha mpio ns

 One ho spita ls sta rting with Adult Me dic a l Ho me s

(Ba ptist)

 Me dic a l Ho me / Prima ry Ca re Pro g ra ms

• Wo lfso n, Ho ltz, St. Jo se ph’ s, Jo e DiMa g g io

 Co mple x Ca re Clinic s

• F

lo rida Ho spita l, Wo lfso n, UF H Sha nds

 I

n pa tie nt Co nsulta tio n

• Mia mi, Jo e DiMa g g io

 Ca re c o o rdina tio n

• Wo lfso n, Ho ltz, Mia mi

HE AL T H CARE T RANSIT ION PROGRAMS IN OT HE R CHIL DRE N’S HOSPIT AL S

Pla nning a HCT Pro g ra m

Me dic al Home & Car e Coor dination

Asse ssme nt and

Coor dination Infor mation & Re fe r r al

Pe diatr ic Car e Syste m

Population Mode l of HCT

Adult Car e Syste m

Inc r e asing c omple xity

• f YSHCN

Co mpo ne nts o f a HCT He a lth Syste m

• T

ra nsitio n Pre pa ra tio n:

 Outre a c h to yo uth, fa milie s a nd sta ke ho lde rs

• I

nfo rma tio n a nd re fe rra l

 E

duc a tio n a nd tra ining fo r prima ry c a re a nd spe c ia lty c a re pe dia tric pro vide rs

 I

nte g ra tio n o f HCT a sse ssme nt, pla nning a nd e duc a tio n into prima ry a nd spe c ia lty c a re

 Ca re c o o rdina tio n a c ro ss tra nsitio n pro c e ss

• Ac ro ss pe dia tric a nd a dult he a lth c a re syste ms
• Ag e s 14 to ? (21, 26, 29…)

 Org a nize d Ha nd o ff to a dult pro vide rs

Co mpo ne nts o f a HCT He a lth Syste m

• T

ra nsitio n Co mple tio n

 Re c ruitme nt a nd tra ining o f a dult prima ry

c a re a nd spe c ia lty pro vide rs

 Struc ture d c o nne c tio ns b e twe e n

pe dia tric a nd a dult c a re

• Dise a se spe c ific struc ture s

 Ong o ing e duc a tio n a nd c o o rdina tio n fo r

yo ung a dults a nd fa milie s

Ste ps Yo u Ca n T a ke to De ve lo p a HCT Pro g ra m

 F

• rm ta skfo rc e with Childre n’ s Ho spita l L

e a de rship

• Nursing , SW, PCP, Spe c ia lty MDs, Admin
• Adult syste m re pre se nta tive s

 Ag re e o n HCT

po lic ie s a nd pro c e sse s fo r pe dia tric c a re

• Prima ry c a re
• Spe c ia lty Ca re
• Inpa tie nt Ca re
• Nursing a nd Allie d He a lth

 I

mple me nt Pe dia tric tra nsitio n e duc a tio n

 I

mple me nt c a re c o o rdina tio n

• Pa rtne r with CMS

 Co nside r Me dic a l Ho me Mo de l fo r the mo st c o mple x yo uth

a nd yo ung a dults

 Re a c h o ut to a dult pro vide r

• Within he a lth c a re syste ms
• By spe c ia lty a re a

Suppo rt fo r HCT T ra nsitio n

F lo rida Na tio na l

https:/ / www.hsc j.ufl.e du/ Ja xHAT S/ to o lkit/

F lo rida ’ s c le a ring ho use fo r he a lth c a re tra nsitio n info rma tio n a t www.F lo rida HAT S.o rg

Ada pte d Brig ht F uture s Pa tie nt Ha ndo ut Gua rdia nship I nsura nc e

Re so urc e s

www.F lo rida HAT S.o rg www.Pro je c t10.o rg www.Go tT ra nsitio n.o rg www.Re ha b Wo rks.o rg www.211AtYo urF ing e rtips.o rg

L inks:

T ra nsitio n 2 Go

T ra ining fo r He a lth Ca re Pro fe ssio na ls

E MR Pro mpts

Na tio na l He a lth Ca re T ra nsitio n Ce nte r HCT L e a rning Co lla b o ra tive s www.g o ttra nsitio n.o rg

AAP/ ACP/ AAF P T ra nsitio ns Clinic a l Re po rt

• Pub lishe d in Pe diatric s, July 2011
• Pro vide s fra me wo rk fo r de ve lo pme nta lly

a ppro pria te tra nsitio n se rvic e s:

 F

• r a ll yo uth

 E

nha nc e d pla nning a c tivitie s fo r YSHCN

 Mo ve fro m pe dia tric to a dult mo de l o f c a re a t

a g e 18-21, e ve n if the re is no tra nsfe r (e .g ., Me d Pe ds, F a mily Me dic ine )

 Within c o nte xt o f a me dic a l ho me