Multiple Sc le ro sis At Ho me Ac c e ss (MAHA): Ca re I nto - PDF document

Multiple Sc le ro sis At Ho me Ac c e ss (MAHA): Ca re I nto Co mmunity K AT HL E E N HE AL E Y ARNP, PHD ASSI ST ANT PROF E SSOR, MUL T I PL E SCL E ROSI S PROGRAM DE PART ME NT OF NE UROL OGI CAL SCI E NCE S UNI VE RSI T Y OF NE BRASK A ME DI CAL CE NT E R Disc lo sure s  Spe a ke r unb ra nde d c o nte nt Bio g e n I de c , a nd T e va Ne uro sc ie nc e s  Suppo rt thro ug h a g ra nt fro m the Multiple Sc le ro sis F o unda tio n

MS With Se ve re Disa b ility  Hig hly c o mple x, c hro nic , dyna mic , disa b ling  I nc re a sing numb e rs re la te d to a g ing / dura tio n o f dise a se 1,2  I ndividua ls a nd fa milie s fa c e e no rmo us c ha lle ng e s in a c c e ssing , c o o rdina ting , ma na g ing a nd fina nc ing c a re 3  F re q ue nt c o mplic a tio ns a nd ho spita liza tio ns  2 nd mo st c o stly dise a se pe r individua l, hig he r c o st with inc re a sing disa b ility 4,5,6 1. Co nfa vre ux C.,Re v Pra t. 2006;56(12):1313-1320. 2. T utunc u M., Mult Sc le r. 2013;19(2):188-198. 3. Na tio na l Multiple Sc le ro sis So c ie ty. Stra te g ic re spo nse white pa pe r 4. Ade lma n G., J Me d E c o n. 2013;16:639–647. 5. K o b e lt G, J Ne uro lNe uro surg Psyc hiatr y. 2006;77(8) 6. .Na c i H, Pharmac o e c o no mic s. 2010;28(5) T he So nya Slifka L o ng itudina l Multiple Sc le ro sis Study (N=2000) N % R equires cane to walk 25 feet 308 14.3 R equires bilateral support to walk 25 123 6.8 feet R equires wheelchair or scooter 270 15.1 Bedridden 7 0.4 T otal 708 36% Minde n, S.L ., Multiple Sc le ro sis, 2006

Pro b le ms, Ne e ds a nd Critic a l Ba rrie rs I mmo b ility, we a kne ss, Diffic ult Ac c e ss to c a re b la dde r, b o we l, spe e c h, due to se ve re disa b ility swa llo w, re spira to ry ,visio n Disabling L a c k o f e xpe rts Pa in, c o g nitio n, mo o d diso rde rs, Psyc ho so c ia l g a ps in se rvic e F ina nc ia l Chronic L a c k o f c o mmunic a tio n, c o o rdina tio n a nd c o ntinuity o f c a re Hig hly Comple x Ca re g ive r b urde n Struc ture o f c urre nt pa yme nt syste ms Dyna mic Ne e d multiple disc ipline s Assistive de vic e s, L a c k o f I nfra struc ture the ra pie s,dura b le me d Ho using Co mplic a tio ns T ra nspo rta tio n UT I s, Re spira to ry Po lic y/ Pa yo rs F a lls a nd Pre ssure Ulc e rs Ca re I nto Co mmunity- MS AT HOME ACCE SS MAHA  T he te rm MAHA is de rive d fro m its c ity o f o rig in Oma ha , Ne b ra ska , whic h wa s se ttle d b y Na tive Ame ric a ns o f the Oma ha trib e .  I n the ir la ng ua g e , Oma ha me a ns: “against the wind, against the cur r e nt”  F a ll 2013…. first pa tie nt Ma rc h 2014

Yo ung , L ., He a le y, K ., Sc hmid, K ., Cha rlto n, M., Za b a d, R.,We ste r, R., F 1000Re se a rc h, 2015 Yo ung , L ., He a le y, K ., Sc hmid, K ., Cha rlto n, M., Za b a d, R.,We ste r, R., F 1000Re se a rc h, 2015

E le me nts Guiding Ca re Pro c e ss : The 10 C’s - Cooperation - Credibility and -Competency consistency -Continuity -Coordination -Caring and -Communication compassion -Continuous quality -Comprehensive improvement -Cost aware Yo ung , L ., He a le y, K ., Sc hmid, K ., Cha rlto n, M., Za b a d , R.,We ste r, R., F 1000Re se a rc h, 2015 MAHA F S K C SR CK SM DS AG DW DA DI L W CP JS CG K N JK K S JW MC MH JC Hospita liza tion L G MJ E R CF Infe c tion MP F a ll L C K W Pre ssure ulc e r K W De ath AO Mw - 2y -1y 0 +1y +2y

Re a so ns fo r Ho spita liza tio n o r E R Re asons for hospitalizations or E R visits 26% UT I 8% F a lls, injury 23% Re spira to ry 8% Re la pse 13% Skin de c ub / c e llulitis 5% E le c tive 16% Othe r suic ide atte mpt , Stro ke , b e lls pa lsy, pa in 70% pote ntially avoidable Cha ra c te ristic s o f Pa tie nts Numbe r % 30 MS E DSS >7.5 • E DSS 7.5 6 20% • E DSS 8 10 33% • E DSS 8.5 7 23% • E DSS 9 7 23% E DSS 9.5 0 • • E DSS 10 0 *** Ge nde r F / M 23/ 7 77%/ 23% 12/ 18 40%/ 60% Age 35- 54/ > 55 L iving Situa tion With o the rs 20 67% Alo ne 8 27% F a c ility 2 6% Rac e Ca uc a sia n 28 94% Afric a n-Ame ric a n 2 6%

Othe r Cha ra c te ristic s o f Pa tie nts Othe r Numbe r % I ndwe lling c a the te rs 11/ 30 37% G tub e s 5/ 30 17% Re spira to ry 4/ 30 13% Po we r c ha irs 20/ 30 67% Pre ssure Ulc e rs 6/ 30 20% Dise a se Mo dula to rs 20/ 30 67% Adva nc e d Dire c tive s 3/ 30 10% I nsura nc e Co ve ra g e Insur anc e Numbe r % Me dic a re / c o mme rc ia l 10/ 30 33% Me dic a re / full Me dic a id 10/ 30 33% Me dic a re / sha re o f c o st 10/ 30 33%

Ho spita liza tio ns Numbe r % L OS Ave r age L OS 13/ 29 45% 106 -1 y Numb e r o f individua ls 106/ 13=8.0 da ys ho spita lize d (US a ve ra g e 9.0) 106/ 29=3.7 da ys 5/ 11 45% 16 +1 y Numb e r o f individua ls 16/ 5=3.2 da ys ho spita lize d 16/ 11=1.5 da ys Diffe re nc e is 2.2 da ys x 4000.00$ hospita l da y= 8,800.00 x 500 pa tie nts = $ 4,400,000.00 e stima te d c o sts a vo ide d Bha rg a va P, 65th Annua l Me e ting o f the Ame ric a n Ac a de my o f Ne uro lo g y; Ma rc h 16-23, 2013; Sa n Die g o , Ca lifo rnia . Ab stra c t PO3-203. Skille d Nursing Da ys Numbe r % L OS Ave r age L OS 44 da ys -1 y Numb e r o f individua ls 10/ 29 34% 439 439/ 10=44 da ys with skille d nursing sta ys 15 da ys 439/ 29=15 da ys +1y Numb e r o f individua ls 0/ 11 0% 0 0 skille d nursing Diffe re nc e is 15 days x 500.00$ skille d day= 7,500.00 x 500 pa tie nts = $ 3,750,000.00 e stima te d c o sts a vo ide d

T o ta l Annua l E stima te d Sa ving s in Re duc ing Ho spita liza tio ns, Skille d F a c ility N Hospita l Skille d T ota l 500 4,400,000.00 3,750,000.00 8,150,000.00 E stimate s for US population I f we wo uld g e ne ra lize the se sa ving s to U.S. c o uld po te ntia lly sa ve mo re tha n 1 b illio n do lla rs in re duc tio n o f ho spita l da ys a nd skille d nursing fa c ility c o sts o n a nnua l b a sis 80,000 (c o nse rva tive e stima te 20% MS po pula tio n) x 16,300$ (a nnua l sa ving s in re duc e d ho spita l a nd skille d fa c ilitie s =1,304,000,000 Pa tie nt Sa tisfa c tio n 10 of 12 sur ve ys r e tur ne d Qua lity o f E xc e lle nt Go o d F a ir Po o r se rvic e 10/ 12 Me e t ne e ds Almo st a ll Mo st F e w No ne 10/ 12 He lp yo u Ye s he lpe d Ye s so me wha t No No ma de de a l with g re a t de a l wo rse yo ur 9/ 12 3/ 12 pro b le ms “I t wa s a “Go dse nd” the y he lpe d us so muc h” “I t he lps tre me ndo usly, I do n’ t ha ve to wo rry so muc h, I ’ ve re c o mme nde d it to o the rs” “T he y g e t it do ne , it’ s a ma zing I ha ve the e q uipme nt I ne e d no w to b e mo re inde pe nde nt” “the y he lpe d me g e t fina nc ia l a ssista nc e ”

Co nc lusio n  Mo re issue s tha n e xpe c te d  T re nds in de c re a se d c o mplic a tio ns  T re nds in de c re a se d ho spita l a nd skille d nursing fa c ility da ys  Ve ry hig h pa tie nt a nd c a re g ive r sa tisfa c tio n  Suppo rt fo r c o ntinuing pro g ra m a nd furthe r study is wa rra nte d F uture Dire c tive s  Co ntinue to ra ise a wa re ne ss o f pro b le m  I nc re a se vo lume a nd c o ntinue to de ve lo p infra struc ture , e xpa nd te le -visits  T ra in pro vide rs  Ob ta in a dditio na l da ta o n inc ide nc e a nd o utc o me s in sta te (Me dic a re )

T ha nk yo u MS F o unda tio n MAHA T E AM fo r suppo rting o ur c linic a l wo rk • Ne uro lo g ist: Ra na Za b a d MD, Dire c to r MS Clinic • So c ia l Wo rke r: Nic o le Ridde r • Nurse pra c titio ne r “Co mpre he nsivist”: K a thle e n He a le y NP • Physic a l the ra pist: T a mmy Ro e hrs PT • Prima ry c a re physic ia n: Re b e c c a We ste r MD Ne il Jo uve na t +Aub rie L inde r MA Ma c Mc la ug hlin Do nna Mruz Do ttie No rg a rd Dia ne Va c e k Ang e la F re nc h Me la nie L o ze no Me lissa Ro b inso n