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 60 50 40 30 Life Expectancy 20 10 0 1970 1980 1990 2000 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)

tant? Why is HCT Impor  Witho ut suppo rt during tra nsitio n yo uth ma y:  L o 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

He a lth Ca re T ra nsitio n ation T r ansition Pr e par Health Care Transition (HCT) I nc re a se d re spo nsib ility fo r he alth c are se lf-manag e me nt; T he “purpo se ful, “T he g o a l o f a unde rsta nding a nd pla nning pla nne d he a lth pla nne d mo ve me nt fo r c ha ng e s in he a lth ne e ds, c a re tra nsitio n is to o f a d o le sc e nts a nd insura nc e , a nd pro vide rs in ma ximize life lo ng yo ung a d ults with a dultho o d; sho uld o c c ur func tio ning a nd c hro nic physic a l a nd o ss a g e s 12-21+ ac r we ll-b e ing fo r a ll me d ic a l c o nd itio ns yo uth, inc luding fro m c hild -c e nte re d tho se who ha ve to a d ult-o rie nte d spe c ia l he a lth c a re he a lth c a re syste ms.” ne e ds a nd tho se T r ansfe r of Car e who do no t.” Blum, 1993 Disc re te e ve nt, physic al transfe r AAP/ACP/AAF P, 2011 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+

Go a ls fo r 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 o tste in DS, e t al., J Ado l Me d. 2008;43:23-29

Population Mode l of HCT Me dic al Home & Car e Coor dination Inc r e asing c omple xity of YSHCN Asse ssme nt and Coor dination Infor mation & Re fe r r al Pe diatr ic Car e Syste m Adult Car e Syste m

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 of 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

Population Mode l of HCT Me dic al Home & Car e Coor dination Inc r e asing c omple xity of YSHCN Asse ssme nt and Coor dination Infor mation & Re fe r r al Pe diatr ic Car e Syste m Adult Car e Syste m

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 o 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

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