Art and Science of Nursing Care in Multiple Sclerosis

Art a rd Science of' NUlrs~ng' Cal rei ln Mulltiple Sc erosis


,jiune HI,aiper; MrS,N, AiNPj IMSCINI UMIDND. !\1m Je r:;ey M ed'ica'i $(;hoo~

f'IJ,~w~Ii.IN~!l;!W' J'@rs~y

Kathlle'e.n [M~ CDs.teIIID,~, 'MS, CR,NP~ MI,SC:N

N!J rse li'racmion ~r. IRese,ilj rch A:sso ciare

Johns Hop.kitns Multiple Scle rosis C~rlitell' and 'Ira nsverse Myel iiis G~nl~r Ba~'~1 rno re, M,a ryl'aifl,d

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earmng ,',,' I,' Jec, 'IVies

• Describe the' folie of the nurse and nurse practitioner i'n multiple sclerosis (MS) management

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t h ,e i r safety, tol e r OJ b i I ~ity,. a: n: d eff C8I cy p rof III e s

Ind!lviduarzed 'The=alPV i .. MS:

New and IKey Concepts

,Julne H,all·pe~~ MSN., AN", MSCN U M DNJJ N·e1w J ersev 1M edlca,~ Sc h O~)~

NI,e'wa rk, IN eVil Jl e rs€'/

'.' The m OS! CO m m on c h ro nit dlsea se a ffect i ng, th e central nervous system ,(eNS]' in young adults

'.' TtM: path clogi c h a'~ i m a rk of M S ls i~ nf am mate ry, de m ye'~ i n,ati~ n g pillal que's in th e IC:N S

'.' lrn m u [II e-med iated i ch ro n it:" IlirnJ~ a m mato ry d isease, prec i p ita tied bV un k n own e nv ~ ro n menta III f ecto rs in genetl ca I ~y suscepti b lei [n d ivid ua 1$

'.' D'eg,!~ neratlve disease c h a ira cte rijiz,ed bV' demvellnanon and axonal loss

'Weir1~r I1t Ann Ne~roJ, 2009~6S:23'ff-14or!t

Comps.:t'o rlI ,AI Co'les A. il,a\!ll'Cet'. 20na;359:j[22.1.~'1231.

.. Approx i m ate 1'1 4,oO,fOOO cases, in th e Un ited Sltate'sfi • Estimates range from 250,000 to 5'001,000

.. Chances 10,," MS developing are 1: 1000 ln general popUllat~()nb

II Estimated 2.5 million cases wor.idlw~dec

~H~· I... t g, ",.!,II • L.,.ij-

.. - ig 1IIIeS'" ~ n c ~IU en te In 'W'I ill ~I~es

.' H ig her preval ence 'wit h no rth ern Eta ro pea nan ces tryt '. Higher incidence '~n women (> 2, to 3,:'1)d,~

• 3,/4 of cases P rese I1t betwee n ages 15 a nd as ye,a rs

~NflIti iJ n;[il 1 MS SOoGj'l1:!t.y. A'Va~ 1 albl ~.a t~ ht)~p;Il~.lIiIatiolna~ I"I"Hs5!Jdet.y.ors:/rm..l1 tAmed1ia~ 1'~bli'arvJb rm:nu["e's/ge.n er(ll~iljTID rm~t&oln/i;nd'ej{,asRJI.x Acc'C;s5ed Fe'brualf'V' 7" iOtCl;

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Disease Progression

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Disease Progression

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Tim,e:-' - ....

Disease Progression

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• Dv'n,am'ic.]n nature

·,A wide range of impact

,. Pediatric to' aging population '. 'Va rlable ,COUrSle'$

.. ,A spectrum of svmptorns

.. Psychol()g'~call and socloeconomic im plications ,. U n p red icta b ~,eJ

.. [Joe m and s skl ~ Ille d a nd co m preh e nslv e~ ca na;

The Plower' of One:

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• MS can be relapsing cr progressive: svrnptorns v,ary from individual to individual a nd wlthln the :j ndlvld ua I hl mself lh erself

• Relapses occur unexpectedlv

"Symptoms can be mild or severe, ongoing Olr 'j nterrnlttcnt, d lsa b I lng or tol era b I e, treata ble or not treatable

• External factors can influence function an dI sa fe'ty

• The challenge for healthcare professionals ls th e varietv and possibility 0'&: M' "5"

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• Ea ch person presents 81 d lfferent set of symptoms, character of onset, and

dis eas e ICO U rse

• Ethnocultural conslderatlons should be included ~n our assessments along with

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What Are' the lmplh:ationls?

• Patient needs are va riable and include clinical ca re, education, COIU nsel i ng, reha b'i I ltatio n, and a dvoca cy

• Assess hea lth literacv: IM!S may not be i~n the patient's voca bu li8 ry

• W'hat worked 'in one patient rnav not work 'in another

• W'e need dlYin a mlc and flexible tools to

em' nowerthe healthcare team

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• ngma ~t usee t:o e me a p ace ,-- ,;3 sing e

source cf all medlcal lnformatlon about

a patient

ill Act:u is I, i Y refe rs to h ea ~[t h ca re th a t :i So a ccess 'j ble t fa m i hI' centered coord in ated, com p rehenslve, co nthllLH1U,SI co m passion ate, a nd cultu ra I hI' effect lve

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Principles lof the Parlent-centered M'edi'ca~ Home'

• Each patient has an ongoing relatlonship with 81 phvslclan and a healthcare team trained 1:0 provide first contact" continuous and

com p rsh ensive ca re

• The team of individuals collectlvelv take responslbilltv for 0 ngo i'ng' ca re' of the patient

• There ~s ,8 whole-person orlentation, lncludlng all stages of life and all stages of illness and wellness

Prl acl pies 10' the Patient-centered M'edi'ca~ Home

• Ca rei is coordl nated a nd/or integrated across

a I ~I elern e nts ,of tlh e cornpl ex healthca re svstem

• Ca rei ls fa ell itat,e'd by reg'i strles, 'j nfo rrnatlo n~ technologv, health mformatlon exchange, and a HI m ea n.s to e n s u re c u ltu ra Uy se n s it I've

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uautv an _ sa .e V ana, ne nau manes 0 .e

rnedlcal horne

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Putting ,3 Name' on the Face

• Th tC' con cep '*1" P-- uts :::. n a rn -, oQ, OC:;iI"'Ii ti-:llt... ~ f'I-'~IC::-,Q of M': :."1 S'-'

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comprehensive care as embodied ln the 'C'IMS'C~, 'it'S V,A=SI,G,I' _OIMISNlj' and the' MS Centers 0" Excellence

• The complex spectrum of MS requires

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t -rna trn £'II nt p- I~,~ -n' Ii:':"

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• The challenge for the healthcare team [5 to cope with chal nge wmth ski I~, and fllle:x,m b'i I ity

NUlrsing Care in MS:

Roles and Re.spDnsib~litie's,

• Support and educate patients in making healthcare decisions

• A,[Jdi patient empowerment to self-care

• Assess and refer fo r e;va.i~ UI atlo n by h ealthca re p rofessiona Is

• Offer com'mlun~ity resources

• What is the patient's disease course?

• What treatmentts] have been prescribed?

• How has MS a'ff'ec:ted the' patient's quality of IHf'e' (Qoll?

• [How are symptoms Interfering with the patient's fu nction a [status?

• [How has MIS affected the' patient and famllv?

• 'W h at dl re the, a via lla Iblll e rasou rces?

• Counsel ane support patients and their

part n e' rs as, t hi e,;y 81 dlj ust to c ha n ges ~ n ~ [jfestylll e a ndl ~ i~v'~ nJ~l with ,a ch ron ic 'i II ness 1(J!r disa b'~ I itv'

• IEm power patients w'itlh self -ca re strate gles to tnES3J't thel r disease a tri d lts svrn pte ms

• Provide patients with tnformatton about reliable reS01urC12S and support: to asslst them t II"'!! overco me and live w- rlth M" S

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M,eeti'ng the Challenges in MS Care:

Strategies and New Approaches

• N u rs j' n g: reso u rces in 1(;11 UI d e:

.. Published guidelines about disease management .. Co nss nsus sta tem ants 0 n sy m [pta m atic management

• ~ 0 M S N (ttl e I trite r natlo na I 0 rg,dl n lzatlo n of M S NursJe,s} www',hJm,sn,.org

.. The (C.MSC) Canso rtlum of 1M S Centers www_. mSc.a r,e. 0 rg,


The' Nati'o'nal Qua~ity Forum

.• C u ltu ra III V al p p ro p dalte ._ Patl ent =ce nter!€l d

.. Communlcatlon

.• Cornrnunltv €H1gagement .• Wo rkfo rce t ra in i ng,

.• Appro prl ate p ractices

Conlcl uslon

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. _rl.~I\ll UlCiI IZlng un:M3 Imen ' consls~s 1011 a,OIP, Ing

or ada ptlng the princlples of: the m edlca I horne . ~ 1o, i( I b I~:~I~ I~' 11'111111 ., es o "1 e 'I'~', '01 no h~;:

• The' MS n u rsl ns professlcna I tad 8V' has a wide vairmety' of €!;diuca'tmonalll and skills development supports

• MieeitJng the cha llenges ~in MS care' requires knowledge, fllle,x~ 01 ntY1 ,8 nd the alb i I l'ty to

broad [llll ~,;t"',~n.e"t:" the 'W "1 d' n lmoact of: t' 11i...~e' dlse ase ,~'-, 0, ~ 7> ,~~,;:),~':j,~:1 t:;;; '." '. t;;;' I~, .. Iti'" a" -,' - Uhb '., ::,:' ',,~~,

Comprehens~ve Mlalnalge,ment olfMS

Kathleen M,~ Clo,stellol" IMIS, C'RNP~, MISCN N'~ rse P ractlne n er, Re,$lea rch Asseclate

Jo h n s H op k ~ n s M U ltl pie, Sclerosis a nd Tra nsverse Mve~ iti s Ce rn ter

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CM,SC' Recommendations for Care:

G~obal Pr'i'nciples

ill Prlnciples of care regardless of ~mlp,ailr'ment: or limitations

• Full and tlrnelv access to healthcare

.. TimelY' and accurate diagnosis of MIS/MS-relatled

sy m pta m sand n a 1111 =M S=lrell ated (::0 n d ltlo n s

• ,Ace urate i nfo -rm,a'ti~o n an d ski II ed ,8 dv lee (II Co ntttil:n u ~tv of ca re

,. Co I ~ a bo ra tiv€ a n d :~ nterd lsclp I i na ry a p p rOI~:M::h to care • Ca re th at: is semis itive to c U Iitu re

,. Su p po rt fo r h ea It h-related Oo t lssu €S

• Treat/rna nage rela pses

• Mlod'ify the course of disease 'w'it:h diseasemod i'fyIng thera ples (DIM,Ts)'

" IlRela pses, d!sabi~'llity

• Mlanagie svmptoms

• 'Improve, Qat

11' 'Tr'eat/Manage' MS R.elapse

• AIKA: attack, exacerbation, flare episode

• New neurologlc s:ymlptoml:s 'that. last .. greater than 24-48 hours t:hat are not: due toa rnetabcllc cause, p,re'c,eded by' ,SJ per~od lof sta 'b'i II i'ty'

·IMetslbolic: cause: infection, exposure to heat


.' Assessrn ent of the, sy m pte rns .' D i 2J gr. osl s of M.s re la IPse

.' Com men trea tment is hi~gh -dose

g:1 UCOICt(~ rnco I'd s

• IV m,et:hy~ p red nlso Ion e

• IV d exa m eth a 510 ne 160~laO Img/ day

• H ig h-dose C) ra II pred n ison e " +/= 0 ra·i p rIlEd n ~s 0 ne tape r

ill, RJ~habilitat~'on strategies

• Acce I erate recove ifV' fro man atta c k: ,_ No effect on amo unt of recoverv

., No long-term benefit


Short: tte rm

.' M eta ~ lie taste .' I' nso m n ia

.' jlittery feel ing .' Sour stomach .' Mo,ed swings. .' 'W'etght ,ga in

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iii Osteoooro 1i::'I'IIC

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II! Cushing-aid appearance II! Cata ra cts

iii IHy'P erte ns lon iii Dlabetes

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II! IMusclle w'a,sting, iii Suppression of

ad te nail gla n ds

211' Mlodify the Disea'sel Course


G'len eric. lNam e


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The' lmportance of Early Ef -'ec.ti've Treatment Wiitlh OM s

• MS may be active' ln the braln :E1lnd spinal cord in the

lib f-' I·'·' 1 . a e

,a US€! nee or C inh:a. svmptcrns+

• LesJo ~IS, m ay O,C(~:u r lea r:lly a nd rn a y be :a sso c lated wi't h i rn:'V'ersi~ bile: dam a ge~- d, "fj~

• E:v~d e nee s uggests t halt d ege neratjv e cha nges ca n occ u r iii n nor m a l-a p pea rii;,ng w !l~b:' m atte r-

ill [) a m age c a n I ead to perm a nent d is a Ibrll,~tv~~,b.·d

• Sta rt~ ng e'ffect~ve treat m e nt ea dy ml,ary h el p S,~IO W' th e a ere u m u ~,a1!Jo n of dam a,gee .. h

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Effectiven1ess of DMTs

'. I nt e rfe ron bet as ,~ n d glat lr a me r a cerate 'were' fou n d to (M:! effe ct I'Ve in c Wi n ita II Y' lsol ated svn d rome (C I S:) '. ~I nterfero n beta- 1 a III M, ~ 1 b, a nd Ii! a'tiii ra m er a cetate have i nd i cat ion So for CI~,S,.

!. In head-to-head trta ls:

• H ~ gh-d ose, h igh-freq uen c:y ~ nterferon s were found to bel :5 UIPH! ri 0 r to, once-w I';:'E!' kll Y' i nte rf,e ron

• '6 ~ atil raj m er a cetate wa s fou n d to ina ve e q ua II ben eftt in

re I ~I pse redu ctl on 'when CQ1ml pa red, d i rectl 'I' wii t h ~ nte'rf;€ ron beta- 1 a (SC) dl n d ~ nt e rfe ron heta-I b

jacob5;L01 et ,a~. N ~(Jgl j Mffid, :200n;343~&9~HJ04l; ('omi G~ ~t al. Loncet. ,2mla,~3~ J~lS 'j~'1SB2; Ka ppos, t, ~t ~ II. LonccN,., 2007;3'0:389·397; CQrni G", ~t ai" Alm~ ri eaWJj Ac~ d,~rill1y,of N~l!,lIro'log¥ Jlt"l!l!'llJal M~l?tin~ 2008. Ou ~~m L .. et ai, ,I!,~f,'j{"e.t. 2002il~Si~1.4,S3- ][4J60~ Panut~'h IH. Int.' J MS Core', 2003;;5,~eO~

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Long-term Efficacy of DIMTs

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ltetro::;p0clrlve. Ii'-pen~ liilheil

be(tl~l lin Im't~ !patiEnts

Gr~ ~ll!-JIi''f'j0d fDr y!,,,,~ fA!';

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Po·tent~al T'OXi'City/S,afety Issues of DMlsl

illlt:e n·e I1'IO,nl beta s

• Neut:ral~:z~'ng

.antili bod ies

.. Hepatic tox"~citv

• D e:IP ressi on

• Increased selzure risk

• Pregn,anc.v category C iG haiti Fa mer acetat .. e

IN,art:alllb:umab '.' P,ML

I. Poss:1i b~,e re I at lo nsh Ii: p to skin rna 111'~g na ncy

'.' at-he r infectlo ns possib ~ e IMilto)(:.a nitlro"n,f!

I.' B'one ImISrn)'w' suporession '. Ca rd i a c taxi c;iJtv

S darv maltenanct

Iii sc 0 no a rv m au gna n c ~I~'S

'. Sterility

COlmmon Silde Effect·s of DM'Ts

I nle'He I"l'Jln DIQ,tt;ilU;

• I' n] ectio n site reacti 0 n S

., SC> IMI

.. Flulike svrnptorns

" HI'e'p'llti c e n:z:y~m e e ~e;vatilo ns • Possible depression

113 II,arti If a mer ,i3lcet:art:,e

II) lnlectlon site reactions II) Syste m lc posti n jectl 01 n re a ctio ~IS

.. Lvm,phaderiopathy

N.ata Illz.tiI m alb

II) Hea dach e (I) Arthralgias

.. I nfuslon reactions

MI~"t:'Oi)(a!ll't If 0 Irl,e

• N al usea

• HI.a lr 1II00ss II) Fatiigue

II I nfecno ns

Strategies to Optimize Adhler'enlce 1:0 MSDMTs

'.' Educat,9 about MS and

treatme nts

'. Rea I isti C: ex pie ctatlo ns .' M a nage slide effects

'.' Anti c:~ pate treat m e nt fatigue '.' D I" i!:"C' ~ II'S' ,Ii" "'=i de" 1k;O re n' c' e'" at C''=!; ch

- ',J!'!!.II '.;;J' ;g J ill ~ II; " I, _' " !I;: gl 'I!..

vlslt to re ~ nfo re'€: lrn po rta nee

'. Use no nj LU dgm enta I approach to discussing

a d here,tJ1 ce

I. Provide' encou rsgernent alndi praise

• Ireiat depression

• En~ist S~!P[P('Ht of fa m ~~y members and

sign lf Cali nt oth e rs

.' R,'9ICO rd re asons fo r

m tssed doses to 'k~lie ntlr~fy a d h erenlCi~' lba, rrie rs


• lnjection site reactions

.. irj'ln+a' ·t"1 n·· D' ;'n' ~1-I,O,i""t'·;i11 sltes

I!\!;J!I. _' , 0, ~, ,.11'1;,'1;.; U III i ,I 1'1;"

i. Wa r m ing m ed lea tio n s to bo dy- te m Ipe ra tu re

i. W.a rm in film a ssa gii'iln g iii ~ j ectio ill site p ost iiill] ecti o n

• Acetaminophen for headaches

3~ Symptom Management

• IF a tlgue =Paln

(Ij 'V~'5u~11 impairrnent (Ij I~ m pa i red galt

• tmbalance

.. IEiimin,a1tiion dvsfunctlon

• Cog:nitii've cha nge

.. Numbness

.. De p ressio n II! Spa sti'c'ity

• We',a kn ess

• C ha nge in coord i rI a tlo n .. Dyspha;gi,a

.. Dilz,zi'ness

• Assessment

• A,ddres.s nOf:l=MS atiologies

• ~ nte rve nt lo iii

.. Utmzing dl cornprehenslve approach .. Reha bllltatlon ii':ntJ~rv€nt~ons

.. Ph arm a c € utlc a III i nte rve nt ~IO ns


,SymlptlDlm Assessment

'-w- -Ik,. '-_. '"';)

·_I~-~at ts liL

.. When dld it beghl?

• Have you ever had lt before?

• ,Any- oth er sym ptn ms 7

• 'Wh a t have yo u do ne fo r :~t? .. I[) ~ d it hell! p'?'

• IHow much do the sy'ml ptorn s affect your ~if,e?

• 'What m ed icatio n s d 0' '~lO'U ta ke ? .. AnY' a I ~ e r.giiie:s?

• IHave you been sick?

.. ,Any' udn,arv svrnptoms?

• Oth e r- infecti on s'?

• I[) 0 yo u h ave a ny other d i a gn oses l'

.' Effect i1ve corn m unicatio n

'. Li sts n to paitil(3 nts: dlseu ss sym pte m s a rrd t reatrnent optle ns

.' Patient e d ucation a In d ern powerrn e nt

,. lnforrn patients of symptoms ,and prov:ide educatlcnal resou rces

.. P hy:sJ ca I m a da ~ iiti,es ,8 n d a ct~'vii't lies

• E ncou regie 'par~'ilents; to, pa rt:~ c~ pate ~ n exe rc lse, p hiys,j!ca I th e ra PV, 3 nd soc ~a I event s

.' COiO rd in ated m u l1tr dlsd p I i~n a ry lnte rventi 0 ns a re key .' Pharrn aco logic ~nt,eIN·lentilion

• C'~ O'Q'S,e: a ppropriate drugs a 111 d dosages

.' ln d ~'vii:d ILl a ~ tze d t reatrnent

.' IQtQ Il:: SIlJ bi,e,ctivl~' we ll-hei ng;' ref ects ttl e ,g~1 p betwe E'11fI

ho p es a n d ex pectatlo ns of [n d ~:Vid IU a ~ s ,8 n d th e'i r c urrent experie n ce

'. Oo It 'FO r a 11 ln d i'v~'d!U a ~ wit ~ MS

.. Optim . lzed ;/"Ollni'I',iI"'ii.g skllls 8i"'i1·d· rn axlm ial hea '1It'h'IIi"'a':i"'O

,- j •••• ~-:. !,,-"" I~' ql~. _:. :",: ~ '.," _ ~Ik··. : 1\, .. .~ _ '.' .~'". 11'1;;

options to em power and! enabl e realignment of one's hopes and expectations

• Hea lth-related Qa L in MIS

.. Pe rce lived overall he a Illth! ln co r po ra ti ng: p hysi ca I~, me nita II', and social elements

'. Depression, fatigue" and dij:s,8Jbi~~tV level 'iJdenti'fie.d as i ndep E'[t1 de nt P Fe d i eta rs of 00 L 'i n M sa

'.' lnterventions to treat the disease process and

rn a'~' sy m pto ms are 'il m IPO rta nt to Q.o L outc o ,m,es,~

,-I n d lvld u all '~:z.e:d ca re ls crltica I to t reati n g the

i nterrel ated n ess of

• NleLM"lologk, symptoms

.' Side effects of t~ eraples .. A,dl h e re nee to th IE; ra pies

• Falmny C!:ndl social implications of MIS

', i:!l :!III" MIli~r 5rl!!!'t. 201l1;7;3:~(l1"3;g,~,,

~ben R J,~~ sa. .200i9;18;"t5ill.!il1p!~:51.l-:S1.'6"

.. IM,eeting: the cha llenges ln M'S care requires

kno w'l edge" f~ie'X'1i b ~ I ility I and th e a bli I ity' to b roa d IV assess th e 'w'i de i m pa ct of th irs d mSle~a SIE'

.. A>rt:,s·"n,s,:ti"I'iI"iig patients and farn '11~~'s"-' om,' eet '~I-n' 'd, ''=iIld, apt 't'I-O' tho

- ,- ~ __ ~ , "I ~ ~,,_, '!!;I. ,~_ I!J.,~ ',",lL_" 'g, , ~ '1;. " I II;!;; Q! . '.. gl, .. '!;;II .IIJ. '. ' . ,_ .,;;:

cha llen ges of MS is paramount to I 0. ng-term 0 utcome s .. 'W-·'.-'_-'g rnus t, focus on *'hO! 0" utco mes of" If.""Iour ;nt'~ili!"'jj-~'IDn'f!o'·IIO': ns:

, ~ _II 1i.;II-., 11 ...... !I..l!:, II~ I!J., 11;,;;:,,1). .. _ ... I!;;,: ... I ...... _, ~'.,,,,""!V~: 1j,.11!1:."

• Red uctio n '~n d isea se a c.t~vij'ty

• f u nctlo na ~ :~ nde pie' nd en c e

• Ab iii ty to pa rtk i pate in d esi red ~'ife a ctivitles

• Ability to ada pt to change

.. ,Alth a Uri ~ 1M S mav 'fa, rce un wa Irrlted c h a nge, as. fI1 u rses we' c a In assist patl ents ad (1, pt ,;3 nd rna 'iJ nta in th e. ~ r !OO IL

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