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REVIEW
Achie ing pa ien engagemen in mul iple
scle osis: A pe spec i e om he mul iple
scle osis in he 21s Cen u y S ee ing G oup
Pe e Rieckmann
a,
n
, Alexey Boyko
b
, Diego Cen onze
c
,
I ina Elo aa a
d
, Ga in Gio annoni
e
, E a Ha do á
,
O o Hommes
g
, Ju g Kessel ing
h
, Gisela Kobel
i
, Dawn Langdon
j
,
Jacques LeLo ie
k
, Sa ah A Mo ow
l
, Celia O eja-Gue a a
m
,
S en Schippling
n
, Ch is oph Thalheim
o
, Heidi Thompson
p
,
Pa ick Ve me sch
q
a
Sozials i ung Bambe g Hospi al, Bambe g, Ge many
b
Moscow MS Cen e, Russian S a e Resea ch Medical Uni e si y named by NI Pi ogo , Moscow, Russia
c
Uni e si à di Roma To Ve ga a, Rome, I aly
d
Tampe e Uni e si y Hospi al, Tampe e, Finland
e
Bliza d Ins i u e, Ba 's School o Medicine and Den is y, London, UK
Gene al Facul y Hospi al, Cha les Uni e si y, P ague, Czech Republic
g
Eu opean Cha co Founda ion, Molenhoek, The Ne he lands
h
Kliniken Valens, Valens, Swi ze land
i
Eu opean Heal h Economics, Spé acèdes, F ance
j
Royal Holloway, Uni e si y o London, Egham, UK
k
CHUM Resea ch Cen e, Mon eal, Quebec, Canada
l
Wes e n Uni e si y, London, On a io, Canada
m
Uni e si y Hospi al San Ca los, Mad id, Spain
n
Uni e si ä sspi al Zü ich, Zü ich, Swi ze land
o
Rehabili a ion in MS (RIMS), B ussels, Belgium
p
No he n I eland Neu ology Se ice, Po adown, UK
q
Uni e si y Hospi al o Lille, Lille, F ance
Recei ed 30 Oc obe 2014; ecei ed in e ised o m 30 Janua y 2015; accep ed 21 Feb ua y 2015
h p://dx.doi.o g/10.1016/j.msa d.2015.02.005
2211-0348/&2015 The Au ho s. Published by Else ie B.V. This is an open access a icle unde he CC BY-NC-ND license
(h p://c ea i ecommons.o g/licenses/by-nc-nd/4.0/).
Abb e ia ions: CIS, clinically isola ed synd ome; CPS, con ol p e e ence scale; DMTs, disease modi ying he apies; JCV, JC i us; MRI,
magne ic esonance imaging; MSDS 3D, Mul iple Scle osis Documen a ion Sys em 3D; MSIF, Mul iple Scle osis In e na ional Fede a ion; NABs,
neu alizing an ibodies; NEDA, no e idence o disease ac i i y; OCD, obsessi e-compulsi e diso de ; OCT, op ical cohe ence omog aphy;
PROs, pa ien - epo ed ou comes; RIS, adiologically isola ed synd ome; SCHIP, S a e Child en's Heal h Insu ance P og am; T2T, ea - o-
a ge ; WHOQoL-BREF, Wo ld Heal h O ganiza ion Quali y o Li e ins umen (sho o m)
n
Co espondence o: Depa men o Neu ology, Sozials i ung Bambe g Hospi al, Bambe g, Ge many. Tel.: +49 951 503 13601.
E-mail add ess: pe e . ieckmann@sozials i ung-bambe g.de (P. Rieckmann).
Mul iple Scle osis and Rela ed Diso de s (2015) 4, 202–218
KEYWORDS
Mul iple scle osis;
Pa ien engagemen ;
Sha ed decision-
making;
Ca e;
Managemen
Abs ac
While ad ances in medicine, echnology and heal hca e se ices o e p omises o longe i y and
imp o ed quali y o li e (QoL), he e is also inc easing eliance on a pa ien 's skills and
mo i a ion o op imize all he benefi s a ailable. Pa ien engagemen in hei own heal hca e
has been desc ibed as he ‘blockbus e d ug o he cen u y’. In mul iple scle osis (MS), pa ien
engagemen is i al i ou comes o he pa ien , socie y and heal hca e sys ems a e o be
op imized. The MS in he 21s Cen u y S ee ing G oup de ised a se o hemes ha equi e
ac ion wi h ega d o pa ien engagemen in MS, namely: 1) se ing and acili a ing engagemen
by educa ion and confidence-building; 2) inc easing he impo ance placed on QoL and pa ien
conce ns h ough pa ien - epo ed ou comes (PROs); 3) p o iding c edible sou ces o accu a e
in o ma ion; 4) encou aging ea men adhe ence h ough engagemen ; and 5) empowe ing
h ough a sense o esponsibili y. G oup membe s independen ly esea ched and con ibu ed
examples o pa ien engagemen s a egies om se e al coun ies and examined in e en ions
ha ha e wo ked well in a eas o pa ien engagemen in MS, and o he ch onic illnesses. The
g oup p esen s hei pe spec i e on hese p og ams, discusses he ba ie s o achie ing pa ien
engagemen , and sugges s p ac ical s a egies o o e coming hese ba ie s. Wi h an unde -
s anding o he issues ha influence pa ien engagemen in MS, we can s a o in es iga e ways
o enhance engagemen and subsequen heal h ou comes. Engaging pa ien s in ol es a b oad,
mul idisciplina y app oach.
&2015 The Au ho s. Published by Else ie B.V. This is an open access a icle unde he CC BY-
NC-ND license (h p://c ea i ecommons.o g/licenses/by-nc-nd/4.0/).
Con en s
1. In oduc ion ............................................................... 203
2. Me hods.................................................................. 203
3. Wha is pa ien engagemen ? .................................................... 204
4. Why is pa ien engagemen so impo an ?............................................. 204
5. Wha influences pa ien engagemen ? ............................................... 205
6. Achie ing pa ien engagemen .................................................... 206
6.1. Theme 1: se ing and acili a ing engagemen by educa ion and confidence-building .............. 206
6.2. Theme 2: pa ien - epo ed ou comes: inc easing he impo ance placed on QoL and pa ien conce ns . . . 208
6.3. Theme 3: p o iding c edible sou ces o accu a e in o ma ion............................. 209
6.4. Theme 4: encou aging ea men adhe ence h ough engagemen .......................... 210
6.5. Theme 5: empowe ing h ough a sense o esponsibili y ................................ 211
7. Discussion................................................................. 211
Conflic o in e es s a emen ....................................................... 212
Acknowledgmen s .............................................................. 215
Appendix.................................................................... 215
Re e ences .................................................................. 215
1. In oduc ion
In 2011, he mul iple scle osis in he 21s Cen u y ini ia i e
wases ablished;i isledbyaS ee ingG oupo in e na ional
expe s in MS ea men and managemen , and by pa ien
g oup ep esen a i es. The ini ia i e seeks o define MS ea -
men and s anda ds o ca e o he 21s cen u y, de elop a
minimum s anda d o ca e in e na ionally, and mo i a e he
MS communi y o align s anda ds o ca e and challenge he
cu en ea men pa adigm. Towa ds ha aim, he S ee ing
G oup de eloped o e a ching p inciples o guide managemen
andimp o eou comes o peoplewi hMS,whichwe e
published in hei 2012 consensus s a emen (Rieckmann
e al., 2013). Among hose p inciples, he g oup iden ified
he pa ien -cen ic elemen s as equi ing he mos u gen
ac ion –in pa icula , he opic o pa ien engagemen in MS.
2. Me hods
Two wo kshops we e held o iden i y hemes ela ed o
pa ien engagemen ha he g oup el we e o pa icula
impo ance in he field o MS. In addi ion o he o iginal
S ee ing G oup membe s, he wo kshops in ol ed a di e se
pool o impo an s akeholde s in MS ca e including neu ol-
ogis s, an MS nu se, a heal h economic specialis , a pa ien
g oup ep esen a i e, a neu o- ehabili a ion specialis and a
neu opsychologis .
Fi e hemes we e p io i ized h ough discussion and
deba e, and hey cons i u e he basis o his publica ion.
203Achie ing pa ien engagemen in mul iple scle osis: A pe spec i e om he mul iple scle osis in he 21s Cen u y
G oup membe s independen ly esea ched and con ibu ed
examples o pa ien engagemen s a egies om se e al
coun ies. Th ough wo addi ional ideocon e ences, he
g oup examined in e en ions ha ha e been success ul in
a eas o pa ien engagemen –no me ely in he field o MS,
bu also in o he ch onic illnesses ha may ha e o e lapping
issues wi h MS. In his publica ion, he g oup p esen s hei
pe spec i e on hese p og ams, discusses esea ch demon-
s a ing he ba ie s o achie ing pa ien engagemen ,
and p o ides p ac ical s a egies o o e coming hese
issues.
3. Wha is pa ien engagemen ?
While ad ances in medicine, echnology and heal hca e
se ices con inue o o e p omises o longe i y and
imp o ed quali y o li e (QoL), eliance on he pa ien 's
knowledge, skills and mo i a ion o access hese benefi s is
inc easing. The easons o his may lie in he need o
s eamline heal h se ices and minimize bu den on heal h-
ca e p o ide s, agmen ed heal hca e deli e y sys ems,
and he mo emen away om a pa e nalis ic/au ho i a ian
s yle o heal hca e a ising om e idence ha pa ien s ha e
be e heal h ou comes when hey play a ole in hei own
heal hca e (Cen e o Ad ancing Heal h, 2014). The US
Cen e o Ad ancing Heal h defines pa ien engagemen
(some imes known as ‘pa ien ac i a ion’)as‘ac ions
indi iduals mus ake o ob ain he g ea es benefi om
he heal hca e se ices a ailable o hem’(Cen e o
Ad ancing Heal h, 2014). Ce ainly, wi h a ch onic illness
such as MS whe e no el he apies will mos likely influence
mul iple body sys ems, a mul idisciplina y app oach o
e ec i e heal hca e managemen is c ucial. As such, a
‘linchpin’is equi ed o ensu e he a ious sou ces o ca e
and ea men a e coo dina ed; he concep o pa ien
engagemen asse s he pa ien as ha linchpin.
Jus as pa ien s a e equi ed o change hei ole om
heal hca e ‘ ecei e ’ o ‘engage ’, he ole o he heal h-
ca e p o essional also needs o e ol e om being a ‘p o i-
de ’o heal hca e o become a ‘mo i a o ’and ‘suppo e ’
o pa ien s o help hem achie e his.
4. Why is pa ien engagemen so impo an ?
Pa ien engagemen can be p ac iced a he mac o (sys-
em), meso (ins i u ion), and mic o (medical encoun e )
le els. Howe e , only some pa ien s will wish o be in ol ed
a mac o o meso le els.
Pa ien engagemen is pa icula ly impo an in a ch onic
illness such as MS, which necessi a es li elong he apy.
Pa ien s ace decisions ela ing o ea men , in e en ions
and se ices a ailable, and QoL (Heesen e al., 2011; on
Puckle , 2013). P e iously, in e e on be a o gla i ame
ace a e he apy was he mains ay o ea men o MS,
(Na ional Collabo a ing Cen e o Ch onic Condi ions, 2004)
and hei side e ec s we e well known, e e sible, p e-
dic able, and ea able (Coyle, 2009). Howe e , in he las
10 yea s, new ea men s ha e eme ged which, al hough
beneficial om an e ficacy o ease o adminis a ion pe -
spec i e, also ha e he po en ial o cause se ious side
e ec s (Gi oua d and Soucy, 2011;Kieseie e al., 2011). I
is impe a i e ha hese e ol ing isks and hei ela ionship
o clinical benefi a e aken in o accoun by he pa ien
(Clane e al., 2014).
Pa ien s can play an in eg al ole in imp o ing he quali y,
sa e y, and cos o heal hca e in e en ions. As such, he
pa ien has been desc ibed as he ‘g ea es un apped
esou ce in heal hca e’, and pa ien engagemen e med
‘ he blockbus e d ug o he cen u y' (Chase, 2013). Fu h-
e mo e, he impo ance o pa ien engagemen as an
essen ial componen o high quali y heal hca e has been
ecognized wo ldwide (Depa men o Heal h, 2005a;
Aljumah e al., 2013;Ins i u e o Medicine 2014,2012;
Chow e al., 2009). The lis o pa ame e s shown o be
influenced by pa ien engagemen is ex ensi e and includes
imp o ed clinical ou comes, educed heal hca e consump-
ion and imp o ed se ice quali y (Depa men o Heal h,
2005a;Chow e al., 2009;Ins i u e o Medicine, 1999;Jha
e al., 2008;Me e ko e al., 2010;Glickman e al., 2010;
Isaac e al., 2010;Cha mel and F amp on, 2008;Pie olongo
e al., 2013;Heesen e al., 2013;Coul e , 2012). Imp o ed
clinical ou comes shown o equa e wi h pa ien engagemen
include imp o ed ea men adhe ence, as e eco e y and
educed mo ali y a es (Depa men o Heal h, 2005a;
Chow e al., 2009;Ins i u e o Medicine, 1999;Jha e al.,
2008;Me e ko e al., 2010;Glickman e al., 2010;Isaac
e al., 2010;Cha mel and F amp on, 2008;Pie olongo
e al., 2013;Heesen e al., 2013;Coul e , 2012) An analysis
o 41800 e e ans wi h myoca dial in a c ion showed ha
be e pa ien -cen e ed ca e was associa ed wi h a lowe
haza d o dea h o e a 1-yea s udy pe iod (HR: 0.992; 95%
CI: 0.986–0.999) (Me e ko e al., 2010).
When pa ien s a e engaged wi h hei heal hca e, bo h
educed heal hca e consump ion (including imp o ed heal h
se ice e ficiency, ewe diagnos ic es s and e e als,
dec eased use o heal hca e se ices and lowe annual
cha ges) and pa ien p e e ence owa ds less agg essi e/
cos ly cou ses o ea men a e seen (Depa men o
Heal h, 2005a;Chow e al., 2009;Ins i u e o Medicine,
1999;Jha e al., 2008;Me e ko e al., 2010;Glickman
e al., 2010;Isaac e al., 2010;Cha mel and F amp on 2008;
Pie olongo e al., 2013;Heesen e al., 2013;Coul e ,
2012). Fo example, pa ien s who a e p ope ly in o med
abou hei ea men op ions a e less likely o op o
expensi e elec i e su gical p ocedu es whe e o he op ions
exis (Isaac e al., 2010). Imp o ed se ice quali y is
obse ed when pa ien s a e engaged, and can include
imp o ed communica ion and heal h li e acy, g ea e con-
fidence in ea men decisions, dec eased malp ac ice
claims, highe hospi al s a e en ion a es, mo e sa isfied
pa ien s, and educed pa ien –physician disco dance
(Depa men o Heal h, 2005a;Chow e al., 2009;Ins i -
u e o Medicine, 1999;Jha e al., 2008;Me e ko e al.,
2010;Glickman e al., 2010;Isaac e al., 2010;Cha mel and
F amp on, 2008;Pie olongo e al., 2013;Heesen e al.,
2013;Coul e , 2012). In S am o d Hospi al, 18 mon hs a e
implemen ing a s uc u ed app oach o pa ien -cen e ed
ca e, he employee sa is ac ion a e inc eased om he 33
d
o he 60
h
pe cen ile (Cha mel and F amp on, 2008). Wi h
so much o be gained om pa ien engagemen , e o s o
p omo e his un apped esou ce a e pa amoun .
P. Rieckmann e al.204
5. Wha influences pa ien engagemen ?
Unde s anding o pa ien engagemen in MS is in i s in ancy
bu he ac o s influencing engagemen appea complex
and di e se. One c oss-sec ional su ey o 199 MS pa ien s
in Sou heas USA, iden ified ha MS- ela ed QoL and MS-
ela ed sel -e ficacy co ela ed significan ly wi h pa ien
ac i a ion in MS pa ien s ( =0.42, Po0.01 and =0.50,
Po0.01, espec i ely). Dep ession had an in e se co ela-
ion ( =0.43; Po0.01) (Goodwo he al.,2014). S udies
in o he disease a eas ha e demons a ed u he elemen s
ha may play a ole. One e iew epo ed fi e ca ego ies
o ac o s influencing engagemen : pa ien - ela ed (pa -
en s' knowledge/belie s, demog aphic cha ac e is ics,
emo ions and coping s yle); illness- ela ed (symp oms,
ea men plan, pa ien 's p io expe ience, illness se e -
i y); heal hca e p o essional (HCP)- ela ed (HCPs’knowl-
edge and belie s, HCP ole); heal hca e se ing- ela ed
(p ima y o seconda y ca e); and ask- ela ed (medical
knowledge equi ed and whe he he equi ed pa ien
beha io challenges clinicians' clinical abili ies) (Da is
e al., 2007).
Table 1 In e en ions shown o suppo sha ed decision-making and heal h li e acy
a
.
In e en ion Po en ial benefi s
Sha ed decision-making
Pa ien decision aids Inc eased pa ien in ol emen in decisions
Be e unde s anding o ea men op ions
Mo e accu a e pe cep ion o isks
Imp o ed quali y o decisions
Does no inc ease pa ien 's anxie y
Heal h coaching Reduced mo ali y
Reduced isk ac o s
Imp o ed heal h s a us
Ques ion p omp s Inc eased ques ion-asking in consul a ions
May inc ease pa ien s' knowledge and unde s anding
May empowe pa ien s and imp o e sa is ac ion
Does no necessa ily inc ease leng h o
consul a ions
Sel -managemen educa ion and suppo Imp o ed pa ien knowledge and unde s anding
Imp o ed confidence and coping abili y
Imp o ed heal h beha io s
Imp o ed social suppo
May imp o e adhe ence o ea men
ecommenda ions
May imp o e heal h ou comes
May educe hospi al admission a es
Heal h li e acy
Pe sonalized pa ien in o ma ion (pape and elec onic) ein o ced
by p o essional o lay suppo
Imp o emen s in pa ien s’knowledge and
unde s anding o hei condi ion
Inc eased sense o empowe men
G ea e abili y o cope wi h he e ec s o illness
Imp o ed pa ien sa is ac ion
May lead o imp o emen s in heal h beha io
May con ibu e o be e heal h ou comes
Telephone counseling and help lines Less social isola ion
Imp o ed sel -e ficacy and sa is ac ion
Reduced mo ali y and ewe hospi aliza ions o
some pa ien g oups
May imp o e diagnos ic accu acy
May con ibu e o imp o ed heal h s a us and
be e QoL
Mo i a ional in e iewing Be e adhe ence o ea men ecommenda ions
Imp o ed heal h beha io
Reduced isk ac o s
Imp o ed heal h ou comes
a
Rep oduced and adap ed om Coul e e al. Pa ien engagemen –wha wo ks? The Jou nal o Ambula o y Ca e Managemen
2012;35:80-9 (Coul e , 2012). Whe e he e idence is less s ong, his is indica ed by including may in he lis o po en ial benefi s.
205Achie ing pa ien engagemen in mul iple scle osis: A pe spec i e om he mul iple scle osis in he 21s Cen u y
6. Achie ing pa ien engagemen
Unde s anding he issues ha influence pa ien engagemen
in MS will acili a e in es iga ion in o how hese migh be
o e come.
6.1. Theme 1: se ing and acili a ing engagemen
by educa ion and confidence-building
A p e equisi e o helping a pa ien become engaged is he
es ablishmen o an e ec i e, ca ing and mu ually espec -
ul pa ien –physician ela ionship; pa ien s consis en ly say
ha good communica ion wi h hei doc o s boos s hei
confidence wi h he heal hca e p ocess ( on Puckle , 2013;
Du y e al., 2004). People p e e o be ea ed by clinicians
who a e empa he ic lis ene s and who a e good a in o m-
ing, ad ising, and educa ing hem (Coul e , 2005;Kea ing
e al., 2002). Mo eo e , he main independen p edic o s o
pa ien sa is ac ion a e pa ien s’pe cep ions o commu-
nica ion and pa ne ship, and a posi i e app oach by he
doc o (Li le e al., 2001). One s udy demons a ed ha
he apis esponsi eness in he fi s wo sessions o he apy
ela es o h ee measu es o ea ly pa ien engagemen in
ea men . Using ideo apes and da a om he NIMH
(Na ional Ins i u e o Men al Heal h) T ea men o Dep es-
sion Collabo a i e Resea ch P og am (TDCRP), an ins u-
men was de eloped o measu e he apis esponsi eness in
he fi s wo sessions o Cogni i e Beha io The apy and
In e pe sonal Psycho he apy. A ac o measu ing posi i e
he apeu ic a mosphe e, and a global i em o he apis
esponsi eness, p edic ed bo h he pa ien 's posi i e pe -
cep ion o he he apeu ic ela ionship a e he second
session and he numbe o pa ien 's emaining in he apy
o mo e han ou sessions. A nega i e he apis beha io
ac o also p edic ed ea ly e mina ion (Elkin e al., 2014).
Engagemen is i al om he day o diagnosis,(Sola i 2014)
when he MS pa ien and hei physician emba k on a unique
jou ney oge he and he emo ional bu den on bo h pa ies
is high (Sola i, 2014). Consequen ly, he collabo a i e
na u e o ha ini ial p ocess and he success in ins iga ing
clea , hones communica ion can de e mine whe he he
u u e ela ionship will be one o us and espec and how
posi i ely he pa ien will be in ol ed in hei heal h
decisions and managemen .
The e is g owing acknowledgmen ha heal hca e p o-
essionals equi e e ec i e communica ion and conflic
managemen skills,(Ha and Longnecke , 2010) despi e some
ecei ing li le o no ocused aining in hese a eas. Some
s udies poin o he need o u he empowe men o MS
physicians o gain be e pa ien communica ion skills
(Pie olongo e al., 2013;Kaspe e al., 2011;Kaspe
e al., 2008). Encou agingly hough he e is e idence ha
communica ion skills aining is becoming mo e isible in
medical educa ion. Such aining is well es ablished in
medical schools ac oss he UK, Eu ope and he USA
(Hausbe g e al., 2012). In he USA, communica ion skills
ea u e p ominen ly in clinical skills examina ions and a e
inco po a ed in o esidency p og ams and main enance
ce ifica ion o p ac icing physicians (Makoul 2003).
Va ious p ac ical s a egies ha e been p oposed o op imize
physician–pa ien communica ion. Simple con e sa ional and
lis ening echniques can be help ul, eg si ing down du ing a
consul a ion, a ending o pa ien com o , es ablishing eye
con ac , lis ening wi hou in e up ing, showing a en ion wi h
non e bal cues such as nodding, allowing silences while pa ien s
sea ch o wo ds, acknowledging and legi imizing eelings,
explaining and eassu ing du ing examina ions, and asking
explici ly i he e a e o he a eas o conce n. The p o ision o
‘p omp shee s’encou ages pa ien s o ask ques ions abou
hei ea men op ions, pa ien s can be encou aged o b ing a
lis o ques ions o hei clinic isi s. Di ec ing pa ien s o access
hei medical no es p omo es anspa ency and us , and
imp o es in o ma ion ecall. Tools such as www.myopenno es.
o g p o ide help in achie ing his and, in ac , he pa ien 's
igh o access hei medical no es has been legalized in F ance
h ough he Kouchne Ac , 2004 (h p://lelien. ypepad. /
associa ion_le_lien/2007/12/accs-aux-in o m.h ml). Howe e ,
pa ien s wi h low le els o heal h li e acy may find his ini ially
challenging. A ‘ oad map’o a se o goals ha bo h physician
and pa ien wish o achie e can be de eloped and amended
h oughou he disease cou se. Shea (2006) also desc ibes a
numbe o use ul echniques, such as: lea ning he pa ien 's
belie se ; amilia iza ion wi h he pa ien 's amily his o y/
cul u al belie s o disco e unde lying mo i a ions; p o iding
he pa ien wi h a sense o collabo a ion in he heal h decision
p ocess; and lea ning he pa ien 's opinion owa ds aking
medica ion in gene al (Shea, 2006). In addi ion, eliable,
up- o-da e publica ions and guidance o suppo physicians in
communica ing wi h hei pa ien s a e p o ided by he MS
Socie y. Coul e (2012) also p o ides ini ia i es ha ha e
p o en beneficial (Table 1)(Coul e 2012)andTable A1
(Appendix) p o ides examples ha suppo he use o hese
ini ia i es. The Adop One! Challenge h p://mind hegap.
sma heal hmessaging.com/2013/08/13/ he-adop -one-challen
ge- he-fi s -s ep- o-be e -pa ien -engagemen -pa ien -expe ie
nces-2/ allows physicians o ob ain a comp ehensi e baseline
assessmen o hei pa ien communica ion skills, measu e how
hei skills compa e wi h bes p ac ice, and access online skills
de elopmen ools. The p og am encou ages physicians o
commi o adop ing one new pa ien -cen e ed communica ion
skill o e he cou se o 12 mon hs and p o ides online aining
and esou ces needed o help hem achie e his goal.
Cu en managemen guidelines unde line he impo ance
o educa ing and suppo ing he MS pa ien . Na ional Ins i u e
o Clinical Excellence (NICE) guidelines ecommend imple-
men ing an educa ion p og am ha akes in o accoun he
di e en aspec s o he disease and inco po a es guidance on
he le el o communica ion, p o ision o emo ional suppo ,
encou agemen o au onomy/sel -managemen and p o ision
o suppo o amily and ca e s; h p://www.nice.o g.uk/
nicemedia/li e/10930/46699/46699.pd . The Eu opean MS
Pla o m's Code o Good P ac ice (h p://www.emsp.o g/
a achmen s/a icle/134/1code08.pd ) s esses he impo
ance o accessible in o ma ion, in o med ad ice and emo
ional suppo , and sugges s sel -help educa ion p og ams be
p o ided o pa ien s and hei ca e s. The concep o
‘ he apeu ic pa ien educa ion’has also been ensh ined in
F ench law (a icle 84, Hospi als, Pa ien s, Heal h and Te i
o y, Law No. 2009-879 o 21 July 2009) and is o ficially
ecognized as an in eg al pa o pa ien ca e. Specifically, i
manda es ha pa ien s mus ecei e specialized educa ion
ela ed o hei condi ion, which can be deli e ed by ained
‘pee educa o s’.
P. Rieckmann e al.206

Table 2 Resea ch and de elopmen s udies e alua ing he symp oms o MS ha commonly impac on QoL and HR-QoL in MS
pa ien s.
S udy Ou come measu ed Findings ela ed o he impac on pa ien
QoL/HR-QoL
Vision impai men s
(Gale a e al., 2012) EDSS: isual unc ion Visual dys unc ion in benign MS was as ma ked
as ha in ypical MS and accoun ed o a
subs an ial deg ee o disabili y and loss o QoL
(Gale a e al., 2012).
(Mow y e al., 2009) Low con as le e acui y Specific isual diso de s measu ed by low
con as le e acui y may influence QoL
(Mow y e al., 2009)
Gai and mobili y impai men s
(Van Asch 2011) Anonymous online su ey on
walking and mobili y
45% o pa ien s epo ed mobili y di ficul ies
wi hin 1 mon h o diagnosis, 93% wi hin 10
yea s. These had a p o ound e ec on
independence, employmen , loss o ea ning,
HRQoL and ADLs
(Yildiz 2012) Online 5-ques ion su ey
e alua ing walking speed
Impai ed walking speed a ec ed ADLs and
a oidance o : walking o he nea es shop
(53%), cleaning he home (46%), c ossing he
s ee (31%), walking o he pos box (29%),
isi ing neighbo s (24%)
Sexual dys unc ion
(No ed e al.,
2001)
SF-36 Heal h Su ey P esen in up 91% o MS pa ien s. May be a
di ec eflec ion o MS neu ological
impai men s, side e ec s o ea men s, o
indi ec changes in sexual esponsi eness due
o o he MS symp oms (eg a igue, dep ession,
bowel and bladde dys unc ion, mobili y issues,
e c) (Bu ks e al., 2009). Pa ien s wi h sexual
dys unc ion sco ed lowe on all 8 subscales o
SF-36, a e adjus men o EDSS (No ed
e al., 2001). Mos significan e ec s on QoL:
pe cei ed social unc ioning, i ali y, pe cei ed
gene al heal h, dep ession, abili y o o m
in ima e ela ionships (Bu ks e al., 2009)
(Bu ks e al., 2009) None (o e iew)
Men al heal h p oblems
(Ha e al., 2005) MSQoL-54, Ry 's Scales o
Psychological Well-being:
dep ession
Dep ession a ec s HR-QoL, possibly mo e han
physical disabili y/symp oms. T ea men o
majo dep ession significan ly imp o ed
psychological well-being
(Phillips e al., 2009) Emo ional Regula ion
Ques ionnai e, WHOQoL-
BREF: emo ional adjus men
Failu e o use e ec i e emo ional eapp aisal
s a egies educed all aspec s o QoL
(Ke n e al., 2009) Symp om Checklis -90-R:
psychological dis ess
Psychological dis ess in MS pa ien s is
associa ed wi h neu ological disabili y, bu is
also p esen in pa ien s wi h minimal o no
neu ological disabili y. Psychological dis ess is
an independen p edic o o MS- ela ed QoL
Cogni i e dys unc ion
(Rao e al., 1991) A comp ehensi e
neu opsychological es
ba e y
Cogni i e dys unc ion impac ed many aspec s
o daily unc ioning, eg wo k, social and
a oca ional ac i i ies, sexual dys unc ion,
pe o mance o household asks,
psychopa hology (Rao e al., 1991).
207Achie ing pa ien engagemen in mul iple scle osis: A pe spec i e om he mul iple scle osis in he 21s Cen u y
6.2. Theme 2: pa ien - epo ed ou comes:
inc easing he impo ance placed on QoL and
pa ien conce ns
MS pa ien s ank hei QoL as lowe han he gene al public,
and lowe han hose wi h o he ch onic diseases (Rudick e al.,
1992;Riazi e al., 2003;Bu den o illness o mul iple scle osis,
1998). The wide- anging e ec s o MS impac an indi idual's
QoL a psychological, physical, social and financial le els,
h oughou all s ages o he disease (Mille and Allen 2010;
Mi chell e al., 2005). Howe e , clinical ocus on MS has elied
hea ily on he Expanded Disabili y Scale Sco e (EDSS) –a
measu e o disease ac i i y weigh ed owa ds he physical,
especially mobili y, aspec s o he disease (Ku zke, 1983).
Mo e ecen ly, howe e , he impo ance o MS ou come assess-
men om he pa ien 's pe spec i e has been ecognized.
Pa ien - epo ed ou comes (PROs) include in o ma ion p o ided
by he pa ien ha eflec s hei unc ioning heal h and well-
being om hei pe spec i e, including how he disease and
medical in e en ions impac on hei QoL. PROs in oduce a
mo e holis ic app oach o disease managemen by inco po a -
ing ou comes a ec ing he pa ien ac oss many aspec s o hei
QoL. The di e se subjec i e symp oms associa ed wi h loss o
QoL a e di ficul o quan i y, hence disc epancies a ise be ween
pa ien and physician pe cep ions o e which domains o heal h
a e he mos c ucial (Ro hwell e al., 1997). None heless,
pa ien s epo symp oms ea lie and mo e equen ly han
clinicians do,(Basch, 2010) and pa ien s’ epo s a e mo e
highly conco dan wi h o e all heal h s a us han clinicians’
epo s (Basch, 2010). In eg a ing PROs in o clinical p ac ice
has he po en ial o cap u e hose benefi s and en ich he
clinical encoun e (Mille and Allen, 2010).
Table 2 (con inued )
S udy Ou come measu ed Findings ela ed o he impac on pa ien
QoL/HR-QoL
(Fe nandez e al.,
2011)
MS In e na ional QoL
Ques ionnai e (MuSiQoL)
Cogni i e dys unc ion is a majo ac o in
de e mining QoL in MS (Rao e al., 1991;
Fe nandez e al., 2011) Limi a ions in a
pa ien 's wo k and social ac i i ies co ela ed
wi h cogni i e decline, independen o he
deg ee o physical disabili y (Ama o e al.,
2001)
(Ama o e al., 2001) A neu opsychological es
ba e y
A en ion defici
(Phillips e al., 2009) Cogni i e Failu es
Ques ionnai e: a en ional
lapses
A en ional ailu es –p edic ed a iance in all
aspec s o QoL (WHOQoL-BREF)
Bladde and bowel p oblems
(Vi ko a e al., 2013) Bladde Con ol Scale,
Bowel Con ol Scale,
Incapaci y S a us Scale
Bladde dys unc ion is associa ed wi h a poo e
HR-QoL in MS pa ien s e en i hey ha e had MS
o a ela i ely sho ime
Fa igue
(Zwibel 2009) Re iew o PubMed sea ches
on mul iple con ibu o s o
QoL in MS
Fa igue is p esen in 75–95% o MS pa ien s
(Zwibel 2009). A ec s physical and men al
componen s o QoL, independen o disabili y.
Impai s oca ional abili ies and s amina o
physical ac i i y; p ima y cause o MS- ela ed
unemploymen (Zwibel 2009;Noguei a e al.,
2009)
(Noguei a e al.,
2009)
Fa igue Se e i y Scale
Pain
(S endsen e al.,
2005)
SF-36: pain Pain in MS is associa ed wi h p essu e pain
h eshold, cold allodynia, abno mal empo al
summa ion, and mechanical o he mal
hype algesia. Pain pa ien s sco ed lowe in all
dimensions o SF-36 compa ed wi h pain- ee
and heal hy subjec s
Sleep dis u bances
(Me lino e al., 2009) Pi sbu gh Sleep Quali y
Index (PSQI), Cha lson
Como bidi y Index (CCI), SF-
36 I alian e sion
Poo sleep p esen in almos 50% o MS pa ien s.
Independen p edic o o QoL on a ious
measu es o QoL. Can esul om pain, bladde
and sexual dys unc ion and o he clinical
condi ions
P. Rieckmann e al.208
The majo ac o s con ibu ing o heal h- ela ed QoL (HR-
QoL) o he MS pa ien include he abili y o pe o m
ac i i ies o daily li ing (ADLs), pa ien well-being, sa is ac-
ion wi h li e, and he impac o disease- ela ed symp oms
on hese pa ame e s (Bu den o illness o mul iple scle osis,
1998). Table 2 shows he esul s om selec ed s udies ha
ha e in es iga ed he symp oms o MS ha commonly
impac on QoL and HR-QoL in MS pa ien s. The challenge
o he physician is o iden i y a managemen plan o add ess
he ange o symp oms impac ing each indi idual's QoL.
To da e, nume ous PRO QoL measu es ha e been de el-
oped specifically o MS,(Vick ey e al., 1995;Cella e al.,
1996;Ri o e al., 1997;Hoba e al., 2001;Fo d e al.,
2001;Dowa d e al., 2009;Meads e al., 2009) bu no
pa icula measu e has gained wide popula i y o consensus
(Sola i, 2005). The e a e p ac ical conside a ions when
inco po a ing a PRO measu e in o clinical p ac ice. These
include deciding which measu e o use and he equency
wi h which i should be conduc ed, finding an app op ia e
se ing and mode o adminis a ion, iden i ying aids o
in e p e he da a, achie ing he ‘buy-in’o ins i u e s a
and pa ien s, sou cing and main aining app op ia e equip-
men , minimizing dis up ion o heal hca e deli e y, and
allowing su ficien ime o implemen a ion.
Bo h digi al-based echnology and mo e adi ional in e -
iew me hods may ha e a ole in PRO measu emen and
should be e alua ed o accep abili y in he en i onmen in
which hey a e o be used. The Mul iple Scle osis Documen-
a ion Sys em 3D (MSDS 3D) is an inno a i e compu e -based
documen a ion sys em being used success ully in clinical
p ac ice in Ge many o in eg a e da a p o ided by he
pa ien , he MS nu se and he physician (Schul heiss e al.,
2012;Ziemssen e al., 2013).
Inco po a ion o PRO QoL measu es in clinical p ac ice is
likely o escala e as ou unde s anding o hem inc eases.
Al eady, hey ha e been included as a cen al elemen o
heal hca e e alua ion and heal h se ice e alua ion, dis-
ease egis ies, epidemiological s udies, d ug R&D, and
clinical ials (Riazi, 2006).
6.3. Theme 3: p o iding c edible sou ces o
accu a e in o ma ion
Conside ing he complexi y o MS disease pa hology and he
in icacy o he managemen op ions a ailable, p o ision o
us ed, accu a e and ele an in o ma ion is pa amoun o
an MS pa ien ( on Puckle , 2013). A ecen Coch ane e iew
de e mined ha in o ma ion p o ision o people wi h MS
inc eased disease- ela ed knowledge wi h no nega i e side
e ec s (Köpke e al., 2014). In 65% o clinic isi s he
pa ien 's desi e o heal h in o ma ion is unde es ima ed
(Wai zkin, 1984). One s udy highligh ed a defici be ween
he in o ma ion pa ien s we e ecei ing and he amoun o
in o ma ion hey ac ually wished o ecei e om a ious
sou ces. While he amoun o in o ma ion p o ided by MS
socie ies and MS specialis nu ses was conside ed close o
ideal, many pa ien s wished o ecei e significan ly mo e
in o ma ion om GPs, eye specialis s, neu ologis s, and
om educa ion sessions (Ma i e al., 2010).
Unsu p isingly, mass media, a he han in e pe sonal in o -
ma ion sou ces, a e he fi s ou e o in o ma ion accessed by
many people wi h MS conce ns (Ma iee al.,2013). Howe e ,
unde s andably, many pa ien s ha econce nsabou hequali y
o ha in o ma ion (Ma ie e al., 2013). One s udy showed ha
he mos us ed in o ma ion sou ce was he physician, wi h
98% epo ing ha hey us ed a physician ‘some’o ‘alo ’
(Ma ie e al., 2013). In ano he s udy, wo- hi ds o pa ien s
we e eluc an o discuss in e ne in o ma ion wi h hei
physician (Hay e al., 2008). The e o e, some pa ien s a e
exposed o in o ma ion ha is no eliable, and o which hei
physicians a e no awa e, no able o p o ide hei eac ion o
opinion (Ball and Lillis, 2001;Po s and Wya , 2002). A possible
ba ie o discussing in e ne -de i ed in o ma ion is ea o
pe cei ed lack o confidence in he physician. Consequen ly,
he MS physician needs o be p epa ed o open discussions
ega ding he accu acy and eliabili y o his sou ce o in o ma-
ion om he fi s consul a ion, and o eassu e he pa ien ha
hey a e open o discussing in o ma ion hey access.
In e ne -based in o ma ion can help b idge he gap be ween
doc o and pa ien and ele a e he le el o dialog. Howe e ,
lack o quali y con ol o such in o ma ion has led o he
de elopmen o heal h websi e e alua ion ools o help di ec
pa ien s o accu a e sou ces o in o ma ion. These ools ha e
e ealed excellen websi es ha can mee nea ly all o he
in o ma ion needs o people wi h MS (Ha land and Ba h, 2007).
To ou knowledge, he e is cu en ly no widely acknowledged
quali y ce ifica ion o MS websi es, al hough hese do exis in
o he disease a eas. One such scheme unde aken by a F ench
heuma oid a h i is (RA) pa ien o ganiza ion p o ides a qua-
li y a ing o RA websi es ha is a bi a ed by bo h heal h p o
essionals and pa ien s (h p://www.polya h i e-anda .com/
a icle171.h ml). This is possibly an a ea o u u e ocus in MS.
Pa ien s can be suppo ed o sel - egula e he in o ma ion
hey access and how hey in e p e i . Some websi es p o ide
use ul commen a y by MS expe s, helping pa ien s in e p e
ial da a and unde s and hei likely impac (h p://mul i
ple-scle osis- esea ch.blogspo .co.uk/). The Mul iple Scle osis
In e na ional Fede a ion (MSIF) has published guidance o
pa ien s on issues o conside when assessing online con en
ega ding MS,(Shaw, 2014) which includes:
check who is esponsible o de eloping he con en o
he websi e and conside hei easons o p o iding he
in o ma ion;
check whe he he con en seems eliable, comple e and
cu en , and check agains o he sou ces;
check ha he websi e p esen s a b oad and unbiased
iew in an easy- o- ead o ma ;
check ha he websi e's p i acy policy and disclaime s
a e clea and accessible;
e en i a websi e looks p o essional i does no mean i
is, check i s c eden ials;
check he websi e's coun y o o igin; ea men s o
se ices may no be a ailable in e e y coun y.
As well as he isk o misin o ma ion, un e e ed access o
MS in o ma ion has he po en ial o o e whelm a pa ien and
cause hem anxie y. To help a oid his, in o ma ion ega ding
MS can be sensi i ely phased o laye ed in opic, a e and
complexi y, depending on he desi e and needs o he indi i-
dual pa ien . Mode n echnology allows an e ec i e and cos
209Achie ing pa ien engagemen in mul iple scle osis: A pe spec i e om he mul iple scle osis in he 21s Cen u y
-e ficien way o achie e his. Gio annoni's ‘ ube map’ o MS
ca e highligh s wha in o ma ion and suppo is equi ed
h oughou all s ages o he disease (Fig. 1).
Owing o he complexi y o MS, helping a pa ien o imp o e
hei heal h li e acy – he capaci y o he pa ien o ob ain,
p ocess and unde s and basic heal h in o ma ion and se ices
needed o make app op ia e heal h decisions –is beneficial.
In e en ions associa ed wi h imp o ed heal h li e acy a e
shown in Table 1 (Coul e , 2012). Howe e , he impac o
in o ma ion is g ea e when accompanied by e bal ein o ce-
men by a physician (Coul e , 2012)–and he MS physician and
hei medical eam a e in he ideal posi ion o ac as a us ed
sounding boa d o a pa ien wi h MS.
One way o supplemen ing he educa ion and suppo
p o ided by physicians and MS nu ses is h ough specialis
MS g oup he apeu ic educa ion p og ams, which can ake
he o m o g oup semina s o wo kshops, and may ein o ce
disease and ea men in o ma ion, physical ehabili a ion
and psychological counseling. They ha e been shown o
imp o e pa ien coping s a egies, pa ien sa is ac ion,
psychological di ficul ies, QoL and ea men pe sis ence
(Colpae , 2010;Gallien e al., 2014;Mazahe i e al., 2011;
Ra , 2013). These may ep esen a esou ce-e ec i e way
o p o iding addi ional in o ma ion o MS pa ien s, bu
analysis on cos -e ec i eness and ways o ensu e up ake
ac oss sub-popula ions a e equi ed (Plow e al., 2010).
6.4. Theme 4: encou aging ea men adhe ence
h ough engagemen
Wi h he a ailabili y o disease-modi ying he apies o MS,
p oblems wi h adhe ence o hese complex ea men egi-
mens unde ch onic condi ions ha e been obse ed (Klaue
and Ze l, 2008). In de eloped coun ies, ea men adhe -
ence among pa ien s wi h MS is a me e 41% (S einbe g
e al., 2010). Conside ing ha lack o adhe ence o in e -
e on be a ea men in MS co ela es wi h a loss o e ficacy,
highe elapse a e and highe u iliza ion o heal h
esou ces,(S einbe g e al., 2010) his emains an a ea o
conce n o ea ing physicians (Ma in e al., 2005).
The causes o non-adhe ence in MS a e complex and a e
epo ed o include o ge ing medica ion, MS- ela ed disabili y
a ec ing abili y o medica e, pa ien disag eemen wi h need
o ea men , cos , poo social suppo (Gi oua d and Soucy,
2011;Ma in e al., 2005;Luga esi e al., 2012;Ce ghe e al.,
Fig. 1 Mul iple scle osis ube map.
a
Red awn and adap ed wi h pe mission o P o esso Ga in Gio annoni. © Ga in Gio annoni.
The schema ic demons a es he b ead h o in o ma ion equi ed by he MS pa ien h oughou he cou se o hei illness. To
op imize he impac , in o ma ion can be laye ed o a a e and dep h ele an o he indi idual pa ien . Fo hcoming e sions o he
ube map will include such laye ing.
P. Rieckmann e al.210
Kaspe J, Heesen C, Köpke S, Fulche G, Geige F. Pa ien s' and
obse e s' pe cep ions o in ol emen di e . Valida ion s udy on
in e - ela ing measu es o sha ed decision making. PLoS One
2011;6:e26255.
Kea ing NL, G een DC, Kao AC, Gazma a ian JA, Wu VY, Clea y PD.
How a e pa ien s' specific ambula o y ca e expe iences ela ed
o us , sa is ac ion, and conside ing changing physicians? J Gen
In Med 2002;17:29–39.
Ke n S, Sch emp W, Schneide H, Schul heiss T, Reichmann H,
Ziemssen T. Neu ological disabili y, psychological dis ess, and
heal h- ela ed quali y o li e in MS pa ien s wi hin he fi s h ee
yea s a e diagnosis. Mul iple Scle osis 2009;15:752–8.
Kieseie BC, Wiendl H, Ha ung HP, Leussink VI, S u e O. Risks and
benefi s o mul iple scle osis he apies: need o con inual
assessmen ? Cu Opin Neu ol 2011;24:238–43.
Kinne sley P, Edwa ds A, Hood K, Cadbu y N, Ryan R, P ou H, Bu le C.
In e en ions be o e consul a ions be o e helping pa ien s add ess
hei in o ma ion needs. Coch ane Da abase Sys Re 2007:3.
Klaue T, Ze l UK. Compliance, adhe ence, and he ea men o
mul iple scle osis. J Neu ol 2008;255(Suppl. 6):S87–92.
Köpke S, Sola i A, Khan F, Heesen C, Gio dano A. In o ma ion
p o ision o people wi h mul iple scle osis. Coch ane Da abase
Sys Re 2014:4.
Koud ia se a T, Ones i E, Pes alozza IF, Spe du i I, Jandolo B. The
impo ance o physician-pa ien ela ionship o imp o emen o
adhe ence o long- e m he apy: da a o su ey in a coho o
mul iple scle osis pa ien s wi h mild and mode a e disabili y.
Neu ol Sci 2012;33:575–84.
Ku zke JF. Ra ing neu ologic impai men in mul iple scle osis: an
expanded disabili y s a us scale (EDSS). Neu ology 1983;33:1444–52.
Lauckne H, Douce S, Wells S. Pa ien s as educa o s: he challenges
and benefi s o sha ing expe iences wi h s uden s. Med Educ
2012;46:992–1000.
Lega e F, Wi eman HO. Sha ed decision making: examining key
elemen s and ba ie s o adop ion in o ou ine clinical p ac ice.
Heal h A ai s 2013;32:276–84.
Li le P, E e i H, Williamson I, e al. Obse a ional s udy o e ec
o pa ien cen edness and posi i e app oach on ou comes o
gene al p ac ice consul a ions. BMJ 2001;323:908–11.
Luga esi A, Ziemssen T, O eja-Gue a a C, Thomas D, Ve dun E.
Imp o ing pa ien -physician dialog: commen a y on he esul s
o he MS Choices su ey. Pa ien P e e Adhe 2012;6:143–52.
Mai F, Whi en P. Sys ema ic e iew o s udies o pa ien sa is ac-
ion wi h elemedicine. BMJ 2000;320:1517–20.
Makoul G. Communica ion skills educa ion in medical school and
beyond. JAMA 2003;289:93.
Ma ie RA, Sal e AR, Ty y T, Fox RJ, Cu e GR. P e e ed sou ces o
heal h in o ma ion in pe sons wi h mul iple scle osis: deg ee o
us and in o ma ion sough . J Med In e ne Res 2013;15:e67.
Ma in LR, Williams SL, Haska d KB, Dima eo MR. The challenge o
pa ien adhe ence. The apeu Clin Risk Manag 2005;1:189–99.
Ma i AI, McCa l H, Klae P, Keane MC, Chen CS. Mul iple scle osis:
pa ien s' in o ma ion sou ces and needs on disease symp oms
and managemen . Pa ien P e e Adhe 2010;4:157–61.
Mazahe i M, Fanian N, Za gham-Bo oujeni A. Expe iences o
pa ien s wi h mul iple scle osis om g oup counseling. I an J
Nu sing Midwi e y Res 2011;16:181–90.
Meads DM, Dowa d LC, McKenna SP, Fisk J, Twiss J, Ecke B. The
de elopmen and alida ion o he Unidimensional Fa igue
Impac Scale (U-FIS). Mul iple Scle osis 2009;15:1228–38.
Me lino G, F a icci L, Lenchig C, e al. P e alence o 'poo sleep'
among pa ien s wi h mul iple scle osis: an independen p e-
dic o o men al and physical s a us. Sleep Med 2009;10:26–34.
Me e ko M, W igh S, Lin H, Lowy E, Clea y PD. Mo ali y among
pa ien s wi h acu e myoca dial in a c ion: he influences o
pa ien -cen e ed ca e and e idence-based medicine. Heal h
Se Res 2010;45:1188–204.
Mille DM, Allen R. Quali y o li e in mul iple scle osis: de e mi-
nan s, measu emen , and use in clinical p ac ice. Cu Neu ol
Neu osci Rep 2010;10:397–406.
Mi chell AJ, Beni o-Leon J, Gonzalez JM, Ri e a-Na a o J. Quali y
o li e and i s assessmen in mul iple scle osis: in eg a ing
physical and psychological componen s o wellbeing. Lance
Neu ol 2005;4:556–66.
Moh DC, Likosky W, Be agnolli A, Goodkin DE, Van De Wende J,
Dwye P, Dick LP. Telephone-adminis e ed cogni i e-beha io al
he apy o he ea men o dep essi e symp oms in mul iple
scle osis. J Consul Clin Psychol 2000;68:356–61.
Mow y EM, Loguidice MJ, Daniels AB, e al. Vision ela ed quali y o
li e in mul iple scle osis: co ela ion wi h new measu es o low
and high con as le e acui y. J Neu ol, Neu osu g Psychia y
2009;80:767–72.
Mui F. Placing he pa ien a he co e o eaching. Medical Teache
2007;29:258–60.
Na ional Collabo a ing Cen e o Ch onic Condi ions. Mul iple
scle osis; Na ional clinical guideline o diagnosis and manage-
men in p ima y and seconda y ca e. NICE Clinical Guidelines,
No. 8. 2004. 〈h p://www.nice.o g.uk/nicemedia/li e/10930/
46699/46699.pd 〉. Las accessed 29 July 2014.
Neubeck L, Red e n J, Fe nandez R, B i a T, Bauman A, F eedman
SB. Teleheal h in e en ions o he seconda y p e en ion o
co ona y hea disease: A sys ema ic e iew. Eu J Ca dio asc
P e en Rehabil 2009;16:281–9.
Noguei a LA, Nob ega FR, Lopes KN, Thule LC, Al a enga RM. The
e ec o unc ional limi a ions and a igue on he quali y o li e
in people wi h mul iple scle osis. A qui os de Neu o-psiquia ia
2009;67:812–7.
No ed MW, Riise T, Myh KM, Land blom AM, Bakke A, Nyland HI.
Reduced quali y o li e among mul iple scle osis pa ien s wi h
sexual dis u bance and bladde dys unc ion. Mul iple Scle osis
2001;7:231–5.
O'Conno AM, Benne CL, S acey D, e al. Decision aids o people
acing heal h ea men o sc eening decisions. Coch ane Da a-
base Sys Re 2009.
Phillips LH, Saldias A, McCa ey A, e al. A en ional lapses,
emo ional egula ion and quali y o li e in mul iple scle osis.
B J Clin Psychol 2009;48:101–6.
Pie olongo E, Gio dano A, Kleine eld M, e al. Decision-making in
mul iple scle osis consul a ions in I aly: hi d obse e and
pa ien assessmen s. PloS One 2013;8:e60721.
Pignone M, DeWal DA, She idan S, Be kman N, Loh KN. In e en-
ions o imp o e heal h ou comes o pa ien s wi h low li e acy:
a sys ema ic e iew. J Gen In e n Med 2005;20:185–92.
Plow M, Cho C, Finlayson M. U iliza ion o heal h p omo ion and
wellness se ices among middle-aged and olde adul s wi h mul iple
scle osis in he mid-wes US. Heal h P omo ion In 2010;25:318–30.
Po s HW, Wya JC. Su ey o doc o s' expe ience o pa ien s using
he In e ne . J Med In e ne Res 2002;4:e5.
on Puckle A. A pa ien 's pe spec i e o pa ne ship in he
ea men o mul iple scle osis: MS egimes-an o ches a ed
app oach. J Neu ol Sci 2013;335:1–4.
Rao SM, Leo GJ, Elling on L, Naue z T, Be na din L, Un e zag F.
Cogni i e dys unc ion in mul iple scle osis. II. Impac on employ-
men and social unc ioning. Neu ology 1991;41:692–6.
Ra A. E ficaci é de l’éduca ion hé apeu ique du pa ien dans les
huma ismes inflamma oi es: quelles p eu es? Re ue du Rhuma-
isme Monog aphies 2013;80:170–3.
Reming on G, Rod iguez Y, Logan D, Williamson C, T eadaway K.
Facili a ing medica ion adhe ence in pa ien s wi h mul iple
scle osis. In J MS Ca e 2013;15:36–45.
Riazi A. Pa ien - epo ed ou come measu es in mul iple scle osis.
In MS J/MS Fo um 2006;13:92–9.
Riazi A, Hoba JC, Lamping DL, e al. Using he SF-36 measu e o
compa e he heal h impac o mul iple scle osis and Pa kinson's
217Achie ing pa ien engagemen in mul iple scle osis: A pe spec i e om he mul iple scle osis in he 21s Cen u y

disease wi h no mal popula ion heal h p ofiles. J Neu ol,
Neu osu g Psychia y 2003;74:710–4.
Rieckmann P, Boyko A, Cen onze D, e al. Fu u e MS ca e: a
consensus s a emen o he MS in he 21s Cen u y S ee ing
G oup. J Neu ol 2013;260:462–9.
Ri o P, Fische J, MIlle D, And ews H, Pa y D, LaRocca N. Mul iple
scle osis quali y o li e in en o y: a use 's manual.New Yo k:
Na ional Mul iple Scle osis Socie y; 1997.
Ro hwell PM, McDowell Z, Wong CK, Do man PJ. Doc o s and pa ien s
don' ag ee: c oss sec ional s udy o pa ien s' and doc o s' pe cep-
ions and assessmen s o disabili y in mul iple scle osis. BMJ
1997;314:1580–3.
Rubak S, Sandbaek A, Lau i zen T, Ch is ensen B. Mo i a ional in e -
iewing: a sys ema ic e iew and me a-analysis. B J Gen P ac
2005;55:305–12.
Rudick RA, Mille D, Clough JD, G agg LA, Fa me RG. Quali y o li e
in mul iple scle osis. Compa ison wi h inflamma o y bowel
disease and heuma oid a h i is. A ch Neu ol 1992;49:1237–42.
Saunde s C, Caon C, Sm ka J, Shoemake J. Fac o s ha influence
adhe ence and s a egies o main ain adhe ence o injec ed
he apies o pa ien s wi h mul iple scle osis. J Neu oscience
Nu sing 2010;42:S10–8.
Schneide J, Kaplan SH, G eenfield S, Li W, Wilson IB. Be e
physician-pa ien ela ionships a e associa ed wi h highe
epo ed adhe ence o an i e o i al he apy in pa ien s wi h
HIV in ec ion. J Gen In e n Med 2004;19:1096–103.
Schul heiss T, Kempcke R, K a zsch F, e al. [Mul iple scle osis
managemen sys em 3D. Mo ing om documen a ion owa ds
managemen o pa ien s]. De Ne ena z 2012;83:450–7.
Shaw S. E alua ing in o ma ion: knowing which in o ma ion o us . MS
in Focus, Mul iple Scle osis In e na ional Fede a ion (MSIF) 〈h p://
wwwmsi o g/includes/documen s/cm_docs/2014/m/msin ocusis
sue23enpd 〉Janua y, 2014.
Shea S. Imp o ing medica ion adhe ence. How o alk o pa ien s abou
hei medica ions.Philadelphia, PA: Wol e s Kluwe Heal h, Inc; 2006.
Sm ka J, Caon C, Saunde s C, Becke BL, Bax e N. Enhancing
adhe ence h ough educa ion. J Neu osci Nu sing 2010;42:S19–29.
Sola i A. Role o heal h- ela ed quali y o li e measu es in he
ou ine ca e o people wi h mul iple scle osis. Heal h Qual Li e
Ou comes 2005;3:16.
Sola i A. E ec i e communica ion a he poin o mul iple scle osis
diagnosis. Mul iple Scle osis 2014;20:397–402.
S acey D, Benne CL, Ba y MJ, Col NF, Eden KB, Holmes-Ro ne M,
Thomson R. Decision aids o people acing heal h ea men o
sc eening decisions. Coch ane Da abase Sys Re 2011:10.
S einbe g SC, Fa is RJ, Chang CF, Chan A, Tanke sley MA. Impac o
adhe ence o in e e ons in he ea men o mul iple scle osis:
a non-expe imen al, e ospec i e, coho s udy. Clinical D ug
In es iga ion 2010;30:89–100.
S endsen KB, Jensen TS, Hansen HJ, Bach FW. Senso y unc ion and
quali y o li e in pa ien s wi h mul iple scle osis and pain. Pain
2005;114:473–81.
Towle A, Bainb idge L, Godolphin W, e al. Ac i e pa ien in ol e-
men in he educa ion o heal h p o essionals. Med Educ
2010;44:64–74.
T eadawayK,Cu e G,Sal e A,e al.Fac o s ha influence adhe ence
wi h disease-modi ying he apy in MS. J Neu ol 2009;256:568–76.
Tsiach is as A, Dikke s C, Boland MR, Ru en- an Molken MP.
Explo ing paymen schemes used o p omo e in eg a ed ch onic
ca e in Eu ope. Heal h Policy 2013;113:296–304.
Van Asch P. Impac o mobili y impai men in mul iple scle osis 2 –
pa ien s’pe spec i es. Eu Neu olog Re 2011;6:115–20.
Vick ey BG, Hays RD, Ha ooni R, Mye s LW, Ellison GW. A heal h-
ela ed quali y o li e measu e o mul iple scle osis. Qual Li e
Res 1995;4:187–206.
Vi ko a M, Rosenbe ge J, K oka co a M, e al. Heal h- ela ed
quali y o li e in mul iple scle osis pa ien s wi h bladde , bowel
and sexual dys unc ion. Disabil Rehabil 2013.
Wai zkin H. Doc o -pa ien communica ion. Clinical implica ions o
social scien ific esea ch. JAMA 1984;252:2441–6.
Wal e s K, Buszewicz M, Russell J, Humph ey C. Teaching as
he apy: c oss sec ional and quali a i e e alua ion o pa ien s'
expe iences o unde g adua e psychia y eaching in he com-
muni y. BMJ 2003;326:740.
We zels R, Ha msen M, Van Weel C, G ol R, Wensing M. In e en-
ions o imp o ing olde pa ien s’in ol emen in p ima y ca e
episodes. Coch ane Da abase o Sys ema ic Re iews (Online)
2008;1: CD004273.
Wo o d JL, Smi h ED, Mille DP. The mul imedia compu e o
o fice-based pa ien educa ion: A sys ema ic e iew. Pa ien
Educ Couns 2005;59:148–57.
Yildiz M. The impac o slowe walking speed on ac i i ies o daily li ing
in pa ien s wi h mul iple scle osis. In J Clin P ac 2012;66:1088–94.
Ziemssen T, Kempcke R, Euli z M, e al. Mul iple scle osis doc-
umen a ion sys em (MSDS): mo ing om documen a ion o
managemen o MS pa ien s. J Neu al T ansmiss 2013;120(Suppl
1):S61–6.
Zwibel HL. Con ibu ion o impai ed mobili y and gene al symp oms o
he bu den o mul iple scle osis. Ad The apy 2009;26:1043–57.
P. Rieckmann e al.218