Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group

Con en s lis s a ailable a ScienceDi ec Mul iple Scle osis and Rela ed Diso de s jou nal homepage: www.else ie .com/loca e/msa d Unme needs, bu den o ea men , and pa ien engagemen in mul iple scle osis: A combined pe spec i e om he MS in he 21s Cen u y S ee ing G oup Membe s o he MS in he 21s Cen u y S ee ing G oup: Pe e Rieckmann a,⁎ , Diego Cen onze b , I ina Elo aa a c , Ga in Gio annoni d , E a Ha do á e , Ju g Kessel ing , Gisela Kobel g , Dawn Langdon h , Sa ah A Mo ow i , Celia O eja-Gue a a j , S en Schippling k , Ch is oph Thalheim l , Heidi Thompson m , Pa ick Ve me sch n , Ka en As on o,1 , Bi gi Baue l,1 , Ch is y Demo y p,1 , Ma ia Paz Giambas iani q,1 , Jana Hla aco a ,1 , Jocelyne Nou e -Gi e s,1 , Geo ge Peppe ,1 , Maija Pon aga u,1 , Emma Rogan l,1 , Ch ys al Rogalski ,1 , Pie e an Galen l,1 , Ali-F édé ic Ben-Amo w a Medical Pa k Loipl, Bischo swiesen, Ge many b Uni e si à di Roma To Ve ga a, Rome & IRCCS Neu omed, Pozzilli, IS, I aly c Tampe e Uni e si y Hospi al, Tampe e, Finland d Bliza d Ins i u e, Ba 's School o Medicine and Den is y, London, UK e Dep o Neu ology and Cen e o Clinical Neu oscience, Fi s Medical Facul y, Cha les Uni e si y, P ague, Czech Republic Kliniken Valens, Valens, Swi ze land g Eu opean Heal h Economics, Spé acèdes, F ance h Royal Holloway, Uni e si y o London, Egham, UK i Wes e n Uni e si y, London, On a io, Canada j Uni e si y Hospi al San Ca los, Mad id, Spain k Uni e si ä sspi al Zü ich, Zu ich, Swi ze land l Eu opean Mul iple Scle osis Pla o m, B ussels, Belgium m No he n I eland Neu ology Se ice, Po adown, UK n Uni e si y o Lille, Lille, F ance o MS Socie y UK, London, UK p Na ional MS Socie y, New Yo k, USA q Asociación Discapacidad Sin Dis ancia, Gex o, Spain Ci ic Associa ion SMS, P ague, Czech Republic s Associa ion F ançaise des Sclé osés en Plaques, Blagnac, F ance Shi MS, Leeds, UK u La ian MS Associa ion, Riga, La ia Na ional MS Socie y, NC, USA w Me ck KGaA, Da ms ad , Ge many ARTICLE INFO Keywo ds: Bu den o ea men Sha ed decision-making Educa ion Unme needs Communica ion ABSTRACT Backg ound: Pa ien engagemen is i al in mul iple scle osis (MS) in o de o op imise ou comes o pa ien s, socie y and heal hca e sys ems. I is essen ial o in ol e all s akeholde s in po en ial solu ions, wo king in a mul idisciplina y way o ensu e ha people wi h MS (PwMS) a e included in sha ed decision-making and disease managemen . To s a his p ocess, a collabo a i e, open en i onmen be ween PwMS and heal hca e p o es- sionals (HCPs) is equi ed so ha simila i ies and dispa i ies in he pe cep ion o key a eas in pa ien ca e and unme needs can be iden ified. Wi h his pa ien -cen ed app oach in mind, in 2016 he MS in he 21s Cen u y S ee ing G oup o med a unique collabo a ion o include PwMS in he S ee ing G oup o p o ide a pla o m o he pa ien oice. Me hods: The MS in he 21s Cen u y ini ia i e se ou o os e engagemen h ough a se ies o open- o um join wo kshops. The aims o hese wo kshops we e: o iden i y simila i ies and dispa i ies in he pe cep ion and h ps://doi.o g/10.1016/j.msa d.2017.11.013 Recei ed 25 Sep embe 2017; Accep ed 11 No embe 2017 ⁎ Co esponding au ho . 1 New pa ien membe s who joined he S ee ing G oup in 2016. E-mail add ess: [email p o ec ed] (P. Rieckmann). Mul iple Scle osis and Rela ed Diso de s 19 (2018) 153–160 2211-0348/ © 2017 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/). T p io i isa ion in h ee key a eas (unme needs, he ea men bu den in MS, and ac o s ha impac pa ien engagemen ), and o p o ide p ac ical ad ice on how he gaps in pe cep ion and unde s anding in hese key a eas could be b idged. Resul s: Combined p ac ical ad ice and di ec ion a e p o ided he e as eigh ac ions: 1. Imp o e communica ion o aise he quali y o HCP–pa ien in e ac ion and op imise he limi ed ime a ailable o consul a ions. 2. Heigh en he awa eness o ‘hidden’disease symp oms and how hese can be managed. 3. Imp o e he dialogue su ounding he benefi e sus isk issues o he apies o help pa ien s become ully in o med and ac i e pa - icipan s in hei heal hca e decisions. 4. P o ide accu a e, lucid in o ma ion in an easily accessible o ma om eliable sou ces. 5. Encou age HCPs and mul idisciplina y eams o acqui e and sha e new knowledge and in- o ma ion among hei eams and wi h PwMS. 6. Fos e g ea e unde s anding and awa eness o challenges aced by PwMS and HCPs in ea ing MS. 7. Collabo a e o de elop local educa ion, communica ion and pa ien - engagemen ini ia i es. 8. Mo i a e PwMS o become ad oca es o sel -managemen in MS ca e. Conclusion: Ou s udy o PwMS and HCPs in he MS in he 21s Cen u y ini ia i e has highligh ed eigh p ac ical ac ions. These ac ions iden i y how diffe ences and gaps in unme needs, ea men bu den, and pa ien en- gagemen be ween PwMS and HCPs can be b idged o imp o e MS disease managemen . O pa icula in e es now a e pa ien -cen ed educa ional esou ces ha can be used du ing ime-limi ed consul a ions o enhance unde s anding o disease and imp o e communica ion. Ac i ely b idging hese gaps in a join app oach enables PwMS o ake pa in sha ed decision-making; wi h imp o ed communica ion and eliable in o ma ion, pa ien s can make in o med decisions wi h hei HCPs, as pa o hei own pe sonalised disease managemen . 1. In oduc ion The Mul iple Scle osis in he 21s Cen u y ini ia i e, es ablished in 2011 and led by a S ee ing G oup o in e na ional expe s in ol ed in he ca e and managemen o people wi h mul iple scle osis (PwMS), is commi ed o imp o ing he s anda d o ca e o PwMS in e na ionally (Box 1). In i s 2012 consensus s a emen , he S ee ing G oup iden ified he need o a be e unde s anding o he unme needs o PwMS and heal hca e p o essionals (HCPs) in an effo o op imise disease man- agemen and imp o e pa ien ou comes (Rieckmann e al., 2013). One o he s a egies pu o wa d o achie e his goal, was o seek o un- de s and and o e come he ba ie s o pa ien engagemen in mul iple scle osis (MS) (Rieckmann e al., 2015). I is essen ial o in ol e all s akeholde s in po en ial solu ions, wo king in a mul idisciplina y way o ensu e ha PwMS can pa icipa e app op ia ely in hei ca e (Rieckmann e al., 2015). C i ically, adding he pe spec i e o pa ien s o ha o hei HCPs is essen ial o op i- mising ca e (Golla e al., 2012). While a sha ed decision-making ap- p oach in pa ien -cen ed ca e has been he ocus o ecen publica ions in MS (Balles e os e al., 2017; Col e al., 2017; Colligan e al., 2017), i is s ill no as well de eloped as i is in o he he apeu ic a eas, such as in he communi y o people li ing wi h human immunodeficiency i us (HIV)/acqui ed immunodeficiency synd ome (AIDS). The achie emen s o people li ing wi h HIV/AIDs we e held in high ega d by bo h he HCPs and PwMS in he collabo a i e g oup. These achie emen s included pe suading go e nmen s and socie ies o change hei app oach o he AIDS epidemic, helping nego ia e educ ions in ea men cos s wi h pha maceu ical companies, influencing how people wi h HIV we e ea ed, and, h ough educa ion, helping o e- e se he s igma associa ed wi h he disease. People li ing wi h HIV/AIDS also de eloped he Den e P inciples (Anon, 1983), which called o a new ela ionship be ween people wi h AIDS, hei heal hca e p o ide s, and socie y. They demanded ha physicians pe cei e hei pa ien s as ‘whole people’, who should ecei e ‘accu a e in o ma ion’. Pa ien engagemen and ac ion has no only had an impac on he way HIV is managed oday, bu was also ins umen al in d i ing local, domes ic and in e na ional public heal h policy-making (W igh , 2013). These p inciples s a ed ha equal weigh should be gi en o pa ien s’and HCPs’opinions ega ding ca e; his e olu iona y iewpoin con inues o influence oday’s heal hca e app oaches. In line wi h he ea ly iews o HIV/AIDS pa ien s and ad oca es, bo h PwMS and HCPs belie e ha collabo a i e in e ac ions a e e- qui ed o ully unde s and and add ess he complex issues in ol ed in MS, and o imp o e u u e ca e; a collec i e pa ien –HCP oice is a posi i e and powe ul one. Al hough a pa ien -cen ed app oach in MS has s a ed o eme ge in he li e a u e (Balles e os e al., 2017; Col e al., 2017; Colligan e al., 2017) he e is s ill a lack o ecogni ion o he impo ance o a sha ed PwMS–HCP pe spec i e in MS ca e (Tin o é e al., 2016). Wi h his pa ien -cen ed app oach in mind, in 2016 he MS in he 21s Cen u y S ee ing G oup o med a unique collabo a ion o include PwMS in he g oup. Using a se ies o open- o um wo kshops a ended by his newly o med join S ee ing G oup, he pa icipan s se ou o os e collabo a ion and explo e diffe ences in he way HCPs and PwMS Box 1 The MS in he 21s Cen u y ini ia i e. Membe s o he S ee ing G oup include: 14 HCPs (including neu ologis s, a neu opsychologis , a heal h economis , an MS nu se, an MS ehabili a ion specialis , and pa ien ad ocacy g oup ep esen a i es) and 11 PwMS. The g oup mee s egula ly o discuss he c ea ion o p og ammes and awa eness o achie e he ollowing objec i es: • o imp o e communica ion be ween pa ien s and HCPs h ough join educa ion and in e ac ion • o imp o e awa eness o and access o ea men and ca e h ough: specialis s (neu ologis s), o he HCPs and he wide heal hca e eam, and specialis se ices (including physio he apy, ehabili a ion and counselling) • o imp o e p o ision/access o in o ma ion by: p o iding high-quali y in o ma ion om c edible sou ces, inc easing public awa eness o MS, and ocusing on e-medicine and e-educa ion • o p omo e pa ien ac i a ion and sel -managemen by: highligh ing he significance and benefi s o sel -managemen , empowe ing pa ien s h ough educa ion and communica ion, and imp o ing he social well-being and in eg a ion o MS pa ien s. Abb e ia ions: HCPs, heal hca e p o essionals; MS, mul iple scle osis; PwMS, people wi h MS. P. Rieckmann e al. Mul iple Scle osis and Rela ed Diso de s 19 (2018) 153–160 154 define and p io i ise a eas o g ea es unme need in MS. The opics discussed in he wo kshops included: unme needs in disease manage- men , he ea men bu den in MS, and ac o s ha impac on success ul pa ien engagemen . The g oup p oposed ha i diffe ences exis in he pe cep ion and p io i isa ion o hese issues, hen sha ed decision- making, and ul ima ely ue pa ien -cen ed ca e, will be difficul o achie e. 2. Me hods In 2016, 11 PwMS we e in i ed o join he MS in he 21s Cen u y S ee ing G oup. Pa icipan s we e chosen o include a mix o gende and age a a ying s ages o disease: newly-diagnosed MS, p ima y p og essi e MS (PPMS), and elapsing emi ing MS (RRMS), and we e d awn om diffe en Eu opean coun ies and he USA. These PwMS ag eed o ake pa in discussions, and be in ol ed in he iden ifica ion o p ac ical ad ice o he u u e. Du ing a join mee ing wi h he HCPs in Ma ch 2016, he PwMS and HCPs pa icipa ed in sepa a e bu concu en wo kshops o discuss hei pe cep ion o unme needs, he ea men bu den in MS, and ac o s ha affec pa ien engagemen . The aim o hese pa allel wo kshops was o each g oup o iden i y he key issues om hei pe spec i e (i.e. ha o ei he HCP o pa ien ) o each o he h ee discussion opics. The g oups we e asked o p io i ise hei esul s o each o he h ee opics in e ms o he pe cei ed impo ance o he imp o emen o ca e and pa ien ou comes. The esul s o he pa allel wo kshops we e sha ed and e iewed by bo h g oups. A subsequen join wo kshop, a ended by bo h g oups, was de- signed o sha e findings, and discuss dispa i ies and simila i ies in he esul s. All wo kshops, chai ed by membe s o he MS in he 21s Cen u y ini ia i e and acili a ed by p o essional mode a o s, we e de- signed as open- o um wo kshops o encou age candid discussion among all pa icipan s. Afinal wo kshop was held in Sep embe 2016 o discuss and con- fi m ac ions based on he issues iden ified in he p e ious wo kshops. This wo kshop was comp ised o he same membe s who had aken pa in he p e ious wo kshops (11 PwMS and 10 HCPs), a ending ei he in pe son o ia elecon e ence. F om he esul s o hese discussions, he join g oup ou lined p ac ical ad ice and di ec ion o how diffe ences and gaps could be b idged by he wide MS communi y. 3. Resul s Key ou comes om he wo kshops o iden i y dispa i ies in pe - cep ions and p io i ies o unme needs, ea men bu den, and pa ien engagemen be ween he PwMS and HCP g oups a e p esen ed below. P ac ical ad ice and di ec ion om his ini ial collabo a ion is co e ed in Sec ion 4. 3.1. Topic 1: unme needs in disease managemen The simila i ies and dispa i ies be ween he HCP and PwMS g oups in he pe cep ion and p io i isa ion o key unme needs in MS a e p esen ed in Table 1. Fi e main a eas we e iden ified wi hin his opic: symp om man- agemen , access o ea men and eimbu semen , pe sonalised ca e, educa ion and communica ion, and esou ces and in o ma ion. Bo h g oups iden ified ‘a cu e o MS’as he single g ea es unme need. One pa icula unme need o PwMS was he difficul y in com- munica ing he in isible/‘hidden’symp oms o MS ha a e ha d o de ec and moni o du ing s anda d neu ological consul a ions. Al hough HCPs acknowledged he impac o hese hidden symp oms, hey conside ed symp oma ic ea men and disease p og ession o be mo e significan han hidden symp oms. PwMS also conside ed ha hei changing p ac ical needs ela ing o disease disabili y and quali y o li e (QoL), such as social ca e and employmen issues, we e no consis en ly being me ; hese pa icula aspec s o ca e we e no iden- ified by HCPs as a high p io i y. HCPs iden ified he inabili y o offe specific he apies due o local ea men policies and high cos s as an unme need, and his was mi - o ed by he iden ifica ion by he PwMS o a ‘ eluc ance’on he pa o HCPs o p esc ibe pa icula he apies. PwMS epo ed dispa i ies in eimbu semen policies in diffe en coun ies, esul ing in a ba ie o pe sonalised he apy. Time cons ain s was ano he issue aised by HCPs and PwMS; bo h g oups we e dissa isfied wi h he limi ed ime a ailable o clinical consul a ions, and acknowledged ha his im- pac ed on he abili y o HCPs o discuss he disease and ea men op- ions wi h pa ien s. Bo h g oups acknowledged he need o addi ional esea ch in o he impac o cu en he apies on QoL ou comes o PwMS, and he need o aise public awa eness and unde s anding o MS o educe p ejudice and disc imina ion. 3.2. Topic 2: bu den o ea men in MS Simila i ies and dispa i ies be ween he HCP and PwMS g oups in he pe cep ion and p io i isa ion o key ac o s affec ing he ea men bu den in MS a e p esen ed in Table 2. Th ee main a eas we e iden i- fied wi hin his opic: isk e sus benefi o MS he apies; ea men decisions; and compliance, adhe ence and moni o ing. F om a PwMS pe spec i e, i appea ed ha HCPs ocus on he ne- ga i e aspec s o ea men ( isk and po en ial ad e se effec s), a he han on he posi i e aspec s (impac on disease p og ession, effec on symp oms). Con e sely, HCPs epo ed app ehension o e he le el o isk pa ien s we e willing o consen o in ela ion o hei he apy. Al hough anxie y abou side effec s wi h espec o he apy escala ion was a sha ed conce n o bo h HCPs and PwMS, his ansla ed in o hesi ancy on he pa o HCPs o escala e ea men . Bo h g oups ac- knowledged ha adhe ence o ea men was an issue, bu o diffe en easons: o PwMS, he complexi y o ea men added o he adhe ence bu den; whe eas o HCPs, pa ien adhe ence issues we e due o he side effec s o ea men . HCPs iden ified he issue o PwMS no engaging in, o aking e- sponsibili y o , hei disease managemen . Bo h g oups belie ed ha a mu ually espec ul, sha ed decision-making app oach was necessa y o enable bo h HCPs and PwMS o ake esponsibili y o disease man- agemen . 3.3. Topic 3: pa ien engagemen The pe cep ion and p io i isa ion o key ac o s affec ing pa ien engagemen in MS a e p esen ed as a join pe spec i e ag eed by bo h he HCPs and PwMS. HCPs and PwMS belie ed ha he adop ion by HCPs o a holis ic app oach du ing consul a ions was c i ical o pa ien engagemen , and had a di ec influence on how pa ien s engaged wi h hei HCPs. The h ee p incipal ac o s ha we e conside ed o ha e he mos posi i e impac on pa ien engagemen we e: echnology (elec- onic heal hca e, elec onic ools and esou ces); educa ion (in o med and suppo i e HCPs, access o in o ma ion, pa ien -d i en in o ma- ion); and suppo and in ol emen wi hin socie y (pee suppo and social ac i i ies). Fo hose in he PwMS g oup who had significan mobili y issues ha made engaging in socie y difficul , echnology and he in e ne enabled pee suppo , educing eelings o isola ion. HCPs and PwMS hough ha ac o s ha nega i ely affec ed pa- ien engagemen included lack o ime wi h HCPs, he public image o MS (including misconcep ions abou MS), and a lack o access o high- quali y in o ma ion (lack o eliable esou ces, in o ma ion ha is ou o da e) (Reen e al., 2017a,). The nega i e impac o MS s e eo ypes on daily li ing was high- ligh ed by newly-diagnosed pa ien s in he PwMS g oup, o whom an o e whelming amoun o inapp op ia e and inaccu a e in o ma ion affec ed hei mo i a ion owa ds pa ien engagemen . A pa icula issue aised by HCPs and PwMS was ha employmen and s aying pa P. Rieckmann e al. Mul iple Scle osis and Rela ed Diso de s 19 (2018) 153–160 155 Table 1 Simila i ies and dispa i ies be ween HCPs and PwMS in he pe cep ion and p io i isa ion o key unme needs in MS. HCPs PwMS Simila i ies and dispa i ies Symp om managemen •A cu e o MS •Symp oma ic ea men and disease p og ession •A lack o ea men s a ailable o manage p og essi e MS and he symp oma ic aspec s o he disease •A cu e o MS •A lack o ad ances in he ecogni ion and ea men o MS disease p og ession •In isible/‘hidden’symp oms and men al heal h aspec s o MS we e difficul o PwMS o communica e, as well as being difficul o moni o and de ec du ing neu ological consul a ions •Cu en ly a ailable he apies and app oaches we e no being used o add ess in isible/‘hidden’symp oms due o a lack o ecogni ion by HCPs •P ac ical needs, no jus clinical symp oms, ela ing o disease disabili y and QoL we e no being me •Simila i ies: o bo h HCPs and PwMS ecognised he need o a cu e o MS and a lack o ea men s/ad ances o manage disease p og ession •Dispa i ies: o PwMS placed a g ea e emphasis han HCPs on hidden symp oms, he men al heal h aspec s o MS, and managemen o hese symp oms o HCPs conside ed symp oma ic ea men o be mo e impo an han hidden symp oms o The p ac ical needs o PwMS we e impo an o pa ien s bu we e no iden ified as a p essing equi emen by HCPs Access o ea men and eimbu semen •Access o app op ia e ca e is c i ical; inabili y o offe specific he apies due o local ea men s ipula ions/ high ea men cos s hinde s ca e •Need o mo e esea ch in o he impac o cu en he apies on QoL ou comes •Pe cep ion ha PwMS p e e no o discuss isks o ea men •Lack o , o delay in, eimbu semen o MS ea men s, can slow he up ake o inno a ions •Time spen counselling and p o iding in o ma ion is o en no eimbu sed •Lack o access o ea men and ea men suppo •Reluc ance on he pa o some HCPs o p esc ibe pa icula he apies •Lack o awa eness o specific he apies/la es he apeu ic op ions among some HCPs •Need o mo e esea ch in o he impac o cu en he apies on QoL ou comes •HCPs end o spend oo much ime ocusing on he isks o ea men , whe eas PwMS wan o discuss bo h isks and benefi s •Mo e s akeholde s need o be educa ed abou he bu den o MS o indi iduals so ha hey ha e a be e unde s anding o he impac o eimbu semen cons ain s •Simila i ies: o Bo h HCPs and PwMS acknowledged ha access o app op ia e ea men /ca e is impo an o Bo h g oups ecognised he need o mo e esea ch in o he impac o cu en he apies on QoL ou comes •Dispa i ies: o PwMS belie ed he e was a lack o awa eness o specific he apies/ eluc ance o p esc ibe ce ain he apies among HCPs; in u n, some HCPs we e us a ed by no being able o offe specific he apies due o local es ic ions o PwMS main ain ha HCPs spend mo e ime ocusing on he isks o ea men o HCPs we e ocused on cos issues, eimbu semen (including ac i i ies ha we e no eimbu sed), and he complexi y o his sys em o PwMS we e ocused on he impac ha eimbu semen cons ain s ac ually had on hei day- o-day li ing o HCPs belie e ha PwMS did no wan o discuss he isks o ea men o PwMS did wan o discuss he isks o ea men o some ex en , bu p e e ed o discuss he benefi s o ea men Pe sonalised ca e •P o essional aining needs o offe mo e in o ma ion on he p o ision o pe sonalised and holis ic ca e •Time o communica e wi h PwMS and he mul idisciplina y eams abou he bes and mos app op ia e op ions o each indi idual is limi ed •A en ion o pe sonalised ca e needs g ea e ime and esou ces in many heal hca e sys ems •Acknowledgemen ha no wo PwMS ha e he same expe ience o he disease •Dissa is ac ion wi h he limi ed ime a ailable o clinical consul a ions •Specific p io i ies a e no consis en ly add essed •Simila i ies: o Bo h g oups acknowledged ha in es men in esou ces is needed o ully achie e pe sonalised ca e o Bo h HCPs and PwMS hough ha he lack o ime a ailable du ing pa ien and HCP communica ion/ clinical consul a ions was insufficien •Dispa i ies: o HCPs also belie ed ha lack o ime was an issue o mul idisciplina y eams ying o de e mine he bes op ions o he managemen o indi idual pa ien s o PwMS conside ed ha hei p io i ies we e no necessa ily add essed du ing consul a ions; his poin was no men ioned by HCPs Educa ion and communica ion •P o essional educa ion and unde s anding o he needs o PwMS equi es imp o emen •Imp o ed communica ion wi h PwMS ega ding complex disease issues such as p og ession is impo an •A lack o public awa eness should be add essed h ough educa ion and communica ion o dispel misconcep ions abou MS and educe p ejudice and disc imina ion in he wo kplace •The HCP–PwMS ela ionship was deemed cen al o achie ing op imal ca e •G ea e educa ion o HCPs abou hidden symp oms would help hem o see he ‘whole pa ien ’; his educa ion should begin du ing he ea ly pa o aining o ein o ce he need o ea pa ien s holis ically •HCPs do no ully unde s and wha is mos impo an o PwMS •PwMS exp essed he iew ha he lack o public awa eness should be add essed h ough educa ion and communica ion o dispel misconcep ions abou MS and educe p ejudice and disc imina ion in he wo kplace •Simila i ies: o PwMS ecognised he impo ance o he HCP–PwMS ela ionship, and HCPs acknowledged ha mo e can be done o imp o e he communica ion o complex issues o PwMS o Bo h g oups highligh ed he lack o public awa eness, misconcep ions and p ejudice su ounding MS o Bo h HCPs and PwMS ecognised ha mo e can be done o imp o e he unde s anding o and educa ion abou MS and PwMS •Dispa i ies: o PwMS gene ally hough ha HCPs did no unde s and wha is impo an o hem (i.e. HCPs adop ed a ‘one size fi s all’app oach) o PwMS specifically men ioned he need o educa e HCPs abou hidden symp oms and holis ic ea men Resou ces and in o ma ion •In o ma ion o pa ien s needs o come om e ed and eliable sou ces •PwMS ha e indi idual in o ma ion needs •Simila i ies: (con inued on nex page) P. Rieckmann e al. Mul iple Scle osis and Rela ed Diso de s 19 (2018) 153–160 156 o socie y was no co e ed in a ypical consul a ion. Bo h HCPs and PwMS exp essed he iew ha he lack o pa ien suppo in his a ea had he po en ial o pa ien s o become socially isola ed. HCPs and PwMS conside ed ha he lack o o e all suppo –including social, employmen , amily and legal suppo –had a nega i e impac on pa- ien engagemen . 4. Discussion A numbe o key ou comes we e highligh ed in he wo kshops iden i ying dispa i ies in he pe cep ion and p io i isa ion o unme needs, ea men bu den, and pa ien engagemen . The diffe ences, and he unde lying easons o hem, need o be add essed be o e HCPs and PwMS can uly engage in he sha ed decision-making p ocess. Bo h g oups need o place equal impo ance on ce ain key ou comes o enable he p ocess o pa ien engagemen and sha ed decision-making ha will ul ima ely lead o pa ien sa is ac ion and bes pa ien ca e. PwMS need o be ecep i e o ‘highes p io i y’issues om he HCP pe spec i e, and HCPs need o conside how an acknowledgemen o PwMS-specific and indi idual conce ns will enhance communica ion. Al hough ad ances in medicine, echnology and heal hca e se ices offe imp o ed clinical ou comes and QoL, he e is also an inc easing eliance on pa ien s’skills and mo i a ion o op imise all he ou come benefi s a ailable. The consequences o pa ien s no engaging wi h hei own heal hca e a e, no su p isingly, bo ne mos hea ily by he pa ien s hemsel es and hei amilies, and include emo ional, physical, social and financial implica ions (Rieckmann e al., 2015). Pa ien s ha e be e heal h ou comes when in ol ed in hei own heal hca e; mo i- a ed pa ien s show imp o ed ea men adhe ence, educed isk ac- o s and imp o ed heal h ou comes (Rieckmann e al., 2015; Tin o é e al., 2016). A sha ed decision-making app oach be ween HCPs and PwMS is essen ial o pa ien -cen ed ca e. F om he key ou comes, HCPs and PwMS eached ag eemen on combined p ac ical ad ice, which is p esen ed in Sec ion 4.1 as eigh p ac ical ac ions. These opinions and ac ions we e elici ed om a e- p esen a i e bu limi ed numbe o HCPs and PwMS. A cu en ocus o he S ee ing G oup is o alida e hese findings wi h a la ge and b oade g oup o HCPs and PwMS. Table 1 (con inued) HCPs PwMS Simila i ies and dispa i ies •The complexi y o claims and he ime and esou ces needed o p ocess eimbu semen hinde s ea men op ions •Educa ional esou ces o en lack disease in o ma ion, wi h li le o no conside a ion o specific disease s a es •Lack o esou ces limi s access o ea men s and suppo ing se ices o Bo h g oups acknowledged he need o be e quali y esou ces and in o ma ion •Dispa i ies: o PwMS exp essed he need o mo e pe sonalised in o ma ion and esou ces specific odiffe en s ages o he disease Abb e ia ions: HCPs, heal hca e p o essionals; MS, mul iple scle osis; PwMS, people wi h MS; QoL, quali y o li e. Table 2 Simila i ies and dispa i ies be ween HCPs and PwMS in he pe cep ion and p io i isa ion o key ac o s affec ing ea men bu den in MS. HCPs PwMS Simila i ies and dispa i ies Risk e sus benefi o MS he apies •Le el o isk o MS he apies ha pa ien s we e willing o accep was a cause o conce n among HCPs •Mo e pa ien suppo was needed o unde s and he concep o isk and o accep he na u e o he isk posed by diffe en he apies •HCP and pa ien anxie y abou ea men side effec s may esul in a eluc ance o escala e ea men – possibly due o esponsibili y and liabili y conce ns •HCPs ocus mo e on he isk han he benefi o ea men s •Mo e in o ma ion on he benefi s o new ea men s a he han ocusing on isks •Pa ien anxie y ela ed o side effec s esul s in neu ologis hesi ancy o escala e ea men •Simila i ies: o Bo h HCPs and PwMS exp essed anxie y abou side effec s wi h espec o he apy escala ion •Dispa i ies: o HCPs belie ed ha PwMS did no app ecia e he concep o isk, and possibly he side effec s o ea men o PwMS conside ed ha HCPs ocused on he nega i e aspec s o ea men ( isk and po en ial ad e se effec s) a he han on he benefi s o new ea men s T ea men decisions •Lack o ime and gene al access o he medical eam is a ea men limi a ion •A lack o access o disease-modi ying ea men s •I egula e iew moni o ing wi h long wai ing imes •Geog aphy- ela ed inequali y in ea men op ions •Need o no el ea men s •Conce n abou he p ac ical implica ions o ea men and effec s on QoL •Some ea men s ca y a high financial bu den •Lack o eimbu semen can lead o delays in ea men and isks inapp op ia e o subop imal ea men •Need o new and no el ea men s •Simila i ies: o No el ea men choices we e welcomed by bo h HCPs and PwMS •Dispa i ies: •HCPs we e conce ned wi h he ba ie s o effec i e ea men choice: limi ed ime spen wi h pa ien s, long wai ing imes, lack o access o medical eams and ce ain ea men s •PwMS placed emphasis on he p ac ical implica ions o ea men and how i affec ed hei QoL. Compliance, adhe ence and moni o ing •Need o equen and ex ensi e disease and ea men moni o ing can affec compliance •Side effec s o ea men we e impo an o bo h ini ia ion and adhe ence; i egula moni o ing o long wai ing imes caused subop imal side-effec moni o ing •The complexi y o ea men adds o he adhe ence bu den •HCPs p o ide an inadequa e explana ion o he ea men op ions •T ea men achie emen s o successes we e o en o e looked •Side-effec managemen needs o be be e suppo ed •Simila i ies: o Bo h g oups acknowledged adhe ence o ea men was an issue •Dispa i ies: o PwMS hough ha side-effec managemen was o en poo ly suppo ed; bu HCPs we e awa e o his and ci ed ha i egula moni o ing/subop imal moni o ing could con ibu e o his o PwMS placed impo ance on ea men op ions being explained and ea men achie emen s being acknowledged; hese poin s we e no men ioned by HCPs Abb e ia ions: HCPs, heal hca e p o essionals; MS, mul iple scle osis; PwMS, people wi h MS; QoL, quali y o li e. P. Rieckmann e al. Mul iple Scle osis and Rela ed Diso de s 19 (2018) 153–160 157 4.1. P ac ical ad ice and di ec ion o ac ion 4.1.1. Imp o e communica ion o aise he quali y o HCP–pa ien in e ac ion and op imise he limi ed ime a ailable o consul a ions Enhanced communica ion wi h HCPs ha includes app op ia ely pi ched in o ma ion, oge he wi h hones y and espec om bo h g oups, was conside ed i al o op imising pa ien ou comes. The e is a g owing ecogni ion o he alue o effec i e communica ion and con- flic -managemen skills (Ha and Longnecke , 2010), which is high- ligh ed by he inclusion o communica ion-skills aining as pa o medical educa ion in Eu ope and he USA (Hausbe g e al., 2012). Due o limi ed ime and esou ces, i is impe a i e ha HCP–PwMS con- sul a ions and heal h se ice in e ac ions a e maximised h ough high- quali y communica ion. In ch onic diseases, imp o ed HCP–pa ien communica ion has been associa ed wi h be e ea men adhe ence, sa is ac ion, unde s anding and e en ion o in o ma ion, and o e all heal h ou comes (Kinsman e al., 2010;Reen e al., 2017b;Langdon e al., 2012). 4.1.2. Heigh en he awa eness o ‘hidden’disease symp oms and how hese can be managed Symp om- ee disease should be he cu en goal o ea men , al- hough i was e iden om he esul s ha a g ea e app ecia ion o he impac o in isible/‘hidden’symp oms is equi ed in o de o ha e a posi i e impac on he QoL o PwMS. Ha d- o-measu e ou comes o ‘hidden’symp oms con inue o ecei e li le a en ion in disease man- agemen , and his is co obo a ed in he li e a u e (Le Fo e al., 2011; Meh and Zimme man, 2015). Hidden symp oms o a igue, dep ession, cogni ion, sleep p oblems, sexual p oblems (Colombo e al., 2014; Lea mon h e al., 2016;Ma ie e al., 2017;Sola i, 2014), and he men al and emo ional impac o MS (Vick ey e al., 1999) con inue o be unme needs. An inc eased awa eness o he impac o hidden symp oms, as well as o he men al heal h aspec s, o MS could help o elici posi i e change in add essing he unme needs o PwMS. 4.1.3. Imp o e he dialogue su ounding he benefi e sus isk issues o he apies o help pa ien s become ully in o med and ac i e pa icipan s in hei heal hca e decisions As he he apeu ic landscape o MS e ol es, a ho ough e alua ion o he po en ial isks and benefi s o ea men s is c i ical o decision- making. Howe e , cu en e idence sugges s ha o he ac o s should also be aken in o accoun , including he na u al his o y o un ea ed disease, moni o ing capabili ies, co-mo bid illnesses, co-medica ions, pa ien p e e ences, a i udes, abili y o adhe e o medica ion, and pa- ien expec a ions (Luga esi e al., 2013; Saposnik e al., 2016). The benefi e sus isk p ofile o any ea men s a egy is a ime- consuming and complica ed ask, and depends on he isk- aking en- dencies o pa ien s and hei HCPs. A lowe le el o sa e y conce n abou disease-modi ying d ugs among PwMS compa ed wi h HCPs was highligh ed in a ecen ocus-g oup s udy (K eme e al., 2017). A g ea e dep h o in o ma ion on ea men isk/benefi has he po en ial o imp o e pa ien engagemen and adhe ence, and educe he pe - cei ed ea men bu den (Lizán e al., 2014). I has been sugges ed ha , in he e en o HCPs and PwMS disag eeing abou accep able isk, PwMS may be willing o accep g ea e le els o isk in exchange o he apeu ic benefi , e.g. i ea men allows hem o con inue o walk (Reed Johnson e al., 2009). A lack o in o ma ion ega ding isks and desi ed ou comes may also inc ease he s ess o ea men decisions o he pa ien (Ba e e al., 2015). 4.1.4. P o ide accu a e, lucid in o ma ion in an easily accessible o ma om eliable sou ces The S ee ing G oup’s aspi a ion is o all PwMS o ha e access o accu a e, up- o-da e, eliable and comp ehensible in o ma ion ha will help empowe hem and allow hem o eel be e placed o make ea men decisions. Educa ional esou ces should also be specific, disease-s age in o ma ion, use - iendly, and in an accessible o ma o PwMS, hei amilies and ca e s. Inapp op ia e, inaccu a e o o e - whelming in o ma ion nega i ely affec s he mo i a ion o PwMS, p e en ing ull engagemen wi h hei disease, ea men and heal h- ca e needs. S udies sugges ha PwMS equen ly epo difficul ies in loca ing pe sonally ele an in o ma ion on he in e ne . The highe educa ional le el equi ed o unde s and heal h in o ma ion wo sens heal h inequali ies, p e en ing ull pa icipa ion in decision-making (Moccia e al., 2016). 4.1.5. Encou age HCP and mul idisciplina y eams o acqui e and sha e new knowledge and in o ma ion among hei eams and wi h PwMS Recen ad ances in he field o MS, la gely d i en by p og ess in diagnosis, MS neu obiology, and he de elopmen o new ea men s, ha e been iden ified (Meh and Zimme man, 2015). Howe e , such ad ances can add o he disease and ea men bu den expe ienced by PwMS and HCPs. Rapid ad ances in ea men op ions may lead o us a ion when HCPs a e unawa e o he la es da a, o do no ha e he capaci y o communica e ele an in o ma ion o pa ien s. The g owing financial cons ain s placed on heal hca e se ices, and he lack o eimbu semen in some heal hca e sys ems, adds o his bu den by limi ing he ime a ailable o , o he numbe o , consul a ions. A lack o esou ces was deemed o be a nega i e influence on he HCP–PwMS ela ionship, educing he quali y o in e ac ion. This ob- se a ion aligns wi h simila findings by o he s ha highligh he im- po ance o adequa e consul a ion ime and access o he gene al medical eam in add essing disease and ea men bu den (Le Fo e al., 2011). 4.1.6. Fos e g ea e unde s anding and awa eness o he challenges aced by PwMS and HCPs in ea ing MS Communica ion and educa ion we e conside ed essen ial o aising awa eness and unde s anding o MS and dispelling misconcep ions abou he disease. Misconcep ions abou MS can hinde accep ance o he diagnosis in new PwMS (Fallahi-Khoshknab e al., 2014) and can cause heal h anxie y in all PwMS, wi h a subsequen impac on QoL, pe cep ion o symp oms (Hay e e al., 2016), and an inc eased isk o dep ession (San o o e al., 2016). Con e sely, posi i e pe sonal pe - cep ions abou MS, such as a pe cep ion o ea men con ol o a ea- lis ic MS imeline pe spec i e, a e mo e s ongly co ela ed wi h disease sel -managemen han a e objec i e clinical a iables such as he se- e i y, ype and du a ion o MS (Wilski and Tasiemski, 2016). Educa ion and an inc eased awa eness o MS among he gene al public may help PwMS o eel less excluded om socie y, as well as po en ially lead o be e heal hca e and, ul ima ely, posi i ely influ- ence eimbu semen / unding decisions in heal hca e sys ems. Some o he basic needs o PwMS ha we e iden ified as un ulfilled almos wo decades ago, such as a holis ic app oach o ca e, con inue o emain unme oday (Colombo e al., 2014; Lea mon h e al., 2016; Sola i, 2014). The ongoing educ ions in heal hca e budge s u he p eclude he p o ision o he pe sonalised ca e ha is c i ical o PwMS. Adop ing a sha ed app oach ha conside s he iews o bo h PwMS and HCPs can be mo e effec i e in achie ing be e ou comes in MS ca e by os e ing a uly co-ope a i e and holis ic unde s anding o he issues aced by PwMS. 4.1.7. Collabo a e o de elop ‘join ’local educa ion, communica ion and pa ien -engagemen ini ia i es Al hough he e a e many examples o educa ional and awa eness ac i i ies designed and deli e ed o and by HCPs and PwMS as sepa- a e en i ies, he e a e ew oppo uni ies o he g oups o in e ac , lea n and communica e oge he ou side he clinical se ing. Such oppo u- ni ies should be encou aged o os e be e unde s anding and colla- bo a ion be ween he g oups. A co-alliance o PwMS and HCPs enables he alignmen o objec i es, ecognises he ange o diffe en pa ien needs, and solici s an inclusi e iew o he bes way o esol e hese P. Rieckmann e al. Mul iple Scle osis and Rela ed Diso de s 19 (2018) 153–160 158 issues. Wi hou collabo a ion, he e is a isk ha HCPs and PwMS will wo k a c oss-pu poses, and ha esolu ion o issues will, a bes , be delayed. In ol emen in socie y and engagemen wi h communi y ac i i ies we e conside ed key ac o s in p omo ing inclusion and mo i a ing pa ien s o u he engage in hei heal hca e needs. The engagemen o pa ien s in hei own heal hca e has been desc ibed as he ‘blockbus e d ug o he cen u y’(Rieckmann e al., 2015). F om he ea ly s ages o his disease, PwMS a e ulne able o social exclusion; nega i e pe - cep ions o he disease can also in oke p ejudices and inequali ies, and ha e a nega i e impac on employmen oppo uni ies (O eja-Gue a a e al., 2017). As disabili y wo sens, he abili y o wo k and in e ac socially becomes u he es ic ed, meaning ha effo s o enhance collabo a ion and de elop a globalised MS communi y a e he e o e much needed. 4.1.8. Mo i a e PwMS o become ad oca es o sel -managemen in MS ca e The esponsibili y o PwMS o engage in hei own heal h lies wi h e e yone in ol ed in hei ca e as well as wi h he pa ien s hemsel es. Ha nessing his sense o esponsibili y owa ds sel -managemen , a all le els, may be ins umen al in mo i a ing engagemen (Rieckmann e al., 2015). A sense o esponsibili y may also be os e ed by PwMS becoming pa ien -educa o s o o he pa ien s o medical p o essionals. This has been shown o be a ewa ding and he apeu ic expe ience, offe ing pa ien s benefi s such as aising hei sel -es eem and sense o empowe men , gaining new insigh s in o hei own issues, os e ing a be e unde s anding o he pa ien –doc o ela ionship and imp o ing QoL (Rieckmann e al., 2015). 5. Conclusion Ou s udy o PwMS and HCPs in he MS in he 21s Cen u y in- i ia i e has highligh ed eigh p ac ical ac ions o he wide MS com- muni y. These ac ions iden i y how diffe ences and gaps in unme needs, ea men bu den, and pa ien engagemen be ween PwMS and HCPs can be b idged by imp o ing MS disease managemen . Sha ed decision-making enables pa ien s o make in o med decisions wi h hei HCPs as pa o hei own pe sonalised disease managemen . O pa i- cula in e es now is he de elopmen o pa ien -cen ed educa ional esou ces ha can be used du ing consul a ions o enhance disease unde s anding and imp o e communica ion be ween PwMS and hei HCPs. This pa ien -cen ed app oach no only allows pa ien s o be mo e com o able wi h he decisions hey make, bu enables ac i e pa icipa ion in sel -ca e. Acknowledgemen s Elisabe a Ve dun di Can ogno om Me ck KGaA con ibu ed o he de elopmen o his manusc ip by ad ising on wo kshop discussions and con en . Edi o ial and esea ch suppo was p o ided by Tina B is o, Anna Thompson, Rachel Pa a , Susan Daniels and Fiona Ha ch on behal o Cello Heal h iScience. Funding Suppo o he wo kshop, as well as he edi o ial and esea ch suppo o his manusc ip , was p o ided by Cello Heal h iScience, unded by Me ck KGaA (Da ms ad , Ge many). Conflic s o in e es s a emen We wish o d aw he a en ion o he Edi o o he ollowing ac s, which may be conside ed as po en ial conflic s o in e es , and o sig- nifican financial con ibu ions o his wo k. P o esso Pe e Rieckmann Hono a ia o lec u es om: Almi all, Apple Heal hca e, Bax e , Baye , Biogen Idec, Boeh inge Ingleheim, Ce ne , Daiichi Sankyo, Genpha m Se ices, Genzyme, Med onic, Me ck Se ono, No a is, Pfize , Roche, SanofiA en is, Siemens AG, Te a. Resea ch g an s om: Baye , EMD Se ono, No a is, Te a, MS Socie y o Canada, Canadian Ins i u e o Heal h Resea ch, He ie Founda ion, Obe ankens i ung, Ge man Neu ology Founda ion. Ad iso y boa d o s ee ing g oup membe o : AbbVie, Baye , Biogen Idec, No a is, Me ck Se ono, Te a, Ge man Mul iple Scle osis Socie y, Canada D ug Re iew. P o esso Diego Cen onze Ad iso y Boa d membe o : Baye , Sche ing, Me ck Se ono, Te a, Biogen Idec, GW Pha maceu icals, Almi all, SanofiGenzyme, No a is. Recei ed hono a ia o speaking o consul a ion ees om: Almi all, Baye , Sche ing AG, Biogen Idec, SanofiGenzyme, GW Pha maceu icals, Me ck Se ono, No a is, SanofiA en is, Te a. Ex e nal expe consul an o he Eu opean Medicines Agency (EMA), and he p incipal in es iga o in clinical ials o : Baye , Sche ing AG, Biogen Idec, No a is, Me ck Se ono, SanofiA en is, Te a, Roche. P o esso I ina Elo aa a Funding o a el and hono a ia (lec u es, ad iso y boa ds, con- sul a ions) om: Sche ing AG, Me ck Se ono, Te a, No a is, Biogen, SanofiA en is, SanofiGenzyme, Oc apha ma. P o esso Ga in Gio annoni S ee ing commi ee membe o : AbbVie (daclizumab ials), Biogen Idec (BG12 and daclizumab ials). Consul ancy ees o ad iso y boa d mee ings. Hono a ia o speaking a Physicians’summi Canbex. Clinical ad iso ega ding he de elopmen o VSN16. Consul ancy ees o ad iso y boa d mee ing o GW Pha maceu icals, and speaking a he launch o Sa i ex in No way. D Celia O eja-Gue a a Recei ed hono a ia om: Biogen Idec, No a is, SanofiGenzyme, Almi all, Me ck Se ono. P o esso E a Ha do á Consul ancy ees, hono a ia, a el and esea ch suppo ecei ed om: Biogen Idec, Me ck Se ono, SanofiGenzyme, Te a, Roche, Alke mes, Recep os, No a is. D Gisela Kobel Con inuing o be on ad iso y boa ds and speak a MS mee ings o ganised by companies ma ke ing MS d ugs including Biogen, Me ck Se ono, Sanofi, No a is. P o esso Dawn Langdon Funding o a el o scien ific mee ings om Baye ; se es on a S ee ing Commi ee o Baye ; has se ed/se es as a consul an o Me ck Se ono, No a is, Baye ; se ed on speake con ac wi h Baye , No a is, Biogen Idec; ecei es educa ional g an s and sponso ship om Baye . D Sa ah A. Mo ow Recei ed in es iga o ini ia ed g an s om wo pha maceu ical companies. Ac ed as a consul an and been in ol ed in ad iso y boa ds. Si e PI o a pha maceu ical un mul icen e RCT. Companies a e: Biogen Idec, EMD Se ono, SanofiGenzyme, No a is Canada. D S en Schippling Recei ed consul ing and speake ees and a el g an s om Biogen Idec, Baye , Me ck Se ono, SanofiGenzyme/SanofiA en is, No a is, Te a, and esea ch g an s om Baye , Biogen Idec, Me ck Se ono, SanofiGenzyme/SanofiA en is, No a is. Ms Heidi Thompson Educa ional g an ecei ed om Ma ha McMenamy Fund, 2012. T a el g an s ecei ed om Te a, Me ck Se ono and Biogen Idec. Consul ancy ees ecei ed om Me ck Se ono and Biogen Idec. P o esso Pa ick Ve me sch Hono a ia and consul ing ees om: Biogen Idec, SanofiGenzyme, Baye , No a is, Te a, Me ck Se ono, GSK and Almi all. Resea ch suppo om Biogen Idec, SanofiGenzyme, Baye and Me ck Se ono. Ch is oph Thalheim P. Rieckmann e al. Mul iple Scle osis and Rela ed Diso de s 19 (2018) 153–160 159 Hono a ia ecei ed om Me ck Se ono. P o esso Ju g Kessel ing Hono a ia ecei ed om Me ck Se ono. Ka en As on, Bi gi Baue , Ch is y Demo y, Jana Hla aco a, Emma Rogan, Geo ge Peppe , Pie e an Galen, Jocelyne Nou e - Gi e, Ma ia Paz Giambas iani, Ch ys al Rogalski, and Maija Pon aga ha e all ecei ed hono a ia as membe s o a Me ck KGaA MS S ee ing G oup. In addi ion, Geo ge Peppe has ecei ed hono a ia om Biogen, Me ck KGaA, No a is, Roche, SanofiGenzyme and Te a. Jana Hla aco a is an employee o he Czech Republic Minis y o Heal h and has ecei ed hono a ia om Me ck KGaA. Ali-F édé ic Ben-Amo is an employee o he Me ck G oup. We confi m ha he manusc ip has been ead and app o ed by all named au ho s and ha he e a e no o he pe sons who sa isfied he c i e ia o au ho ship bu a e no lis ed. We u he confi m ha he o de o au ho s lis ed in he manusc ip has been app o ed by all au ho s. We confi m ha we ha e gi en due conside a ion o he p o- ec ion o in ellec ual p ope y associa ed wi h his wo k and ha he e a e no impedimen s o publica ion, including he iming o publica ion, wi h espec o in ellec ual p ope y. In so doing we confi m ha we ha e ollowed he egula ions o ou ins i u ions conce ning in ellec ual p ope y. We unde s and ha he Co esponding Au ho is he sole con ac o he Edi o ial p ocess (including Edi o ial Manage and di ec commu- nica ions wi h he office). He is esponsible o communica ing wi h he o he au ho s abou p og ess, submissions o e isions and final ap- p o al o p oo s. We confi m ha we ha e p o ided a cu en , co ec email add ess which is accessible by he Co esponding Au ho . Re e ences Balles e os, J. e al., 2017. Psychome ic p ope ies o he SDM-Q-9 ques ionnai e o sha ed decision-making in mul iple scle osis: i em esponse heo y modelling and confi ma o y ac o analysis. Heal h Qual. Li e Ou comes. 15, 79, (A ailable a ) 〈h ps://hqlo.biomedcen al.com/a icles/10.1186/s12955-017-0656-2〉. Anon, 1983. The Den e P inciples. A ailable a : 〈h p://da a.unaids.o g/pub/ Ex e nalDocumen /2007/gipa1983den e p inciples_en.pd 〉. Ba e, V., e al., 2015. Impac o medical in e en ion on s ess and quali y o li e in pa ien s wi h cance . Indian J. Pallia . Ca e 21 (2), 203. (A ailable a ). 〈h p://www. jpallia i eca e.com/ ex .asp?2015/21/2/203/156503〉. Col, N.F. e al., 2017. Whose p e e ences ma e ? A pa ien -cen e ed app oach o elici ing ea men goals. Medicine. Decis. Making. h p://dx.doi.o g/10.1177/ 0272989X17724434 [Epub ahead o p in ]. Colligan, E., Me zle , A., Ti yaki, E., 2017. Sha ed decision-making in mul iple scle osis. pp.185–190. h p://dx.doi.o g/10.1177/1352458516671204. Colombo, C., e al., 2014. Web sea ch beha io and in o ma ion needs o people wi h mul iple scle osis: ocus g oup s udy and analysis o online pos ings. In e ac . J. Med. Res. 3 (3), e12. (A ailable a ). 〈h p://www.i-jm .o g/2014/3/e12/〉. Fallahi-Khoshknab, M., e al., 2014. Con on ing he diagnosis o mul iple scle osis. J. Nu s. Res. 22 (4), 275–282. (A ailable a ). 〈h p://con en .wkheal h.com/linkback/ openu l?sid=WKPTLP:landingpage&an=00134372-201412000-00009〉. Golla, H., e al., 2012. Unme needs o se e ely affec ed mul iple scle osis pa ien s: he heal h p o essionals’ iew. Pallia . Med. 26 (2), 139–151. (A ailable a ). 〈h p:// pmj.sagepub.com/cgi/doi/10.1177/0269216311401465〉. Ha, J.F., Longnecke , N., 2010. Doc o –pa ien communica ion: a e iew. Ochsne J. 10 (1), 38–43. (A ailable a ). 〈h p://www.ncbi.nlm.nih.go /pubmed/21603354〉. Hausbe g, M.C., e al., 2012. Enhancing medical s uden s’communica ion skills: de el- opmen and e alua ion o an unde g adua e aining p og am. BMC Med. Educ. 12 (1), 16. (A ailable a ). 〈h p://bmcmededuc.biomedcen al.com/a icles/10.1186/ 1472-6920-12-16〉. Hay e , A.L., e al., 2016. The impac o heal h anxie y in pa ien s wi h elapsing e- mi ing mul iple scle osis: mispe cep ion, misa ibu ion and quali y o li e. B . J. Clin. Psychol. 55 (4), 371–386. (A ailable a ). 〈h p://doi.wiley.com/10.1111/bjc. 12106〉. Kinsman, H., e al., 2010. “We’ll Do his oge he ”: he ole o he fi s pe son–plu al in os e ing pa ne ship in pa ien -physician ela ionships. J. Gene al. In e n. Med. 25 (3), 186–193. (A ailable a :). 〈h p://link.sp inge .com/10.1007/s11606-009- 1178-3〉. K eme , I.E.H., e al., 2017. Compa ison o p e e ences o heal hca e p o essionals and MS pa ien s o a ibu es o disease- modi ying d ugs : A bes - wo s scaling. (June), h p://dx.doi.o g/10.1111/hex.12599 [Epub ahead o p in ] pp.1–10. Langdon, D., e al., 2012. Recommenda ions o a B ie In e na ional Cogni i e Assessmen o Mul iple Scle osis (BICAMS). Mul . Scle . J. 18 (6), 891–898. (A ailable a ). 〈h p://jou nals.sagepub.com/doi/10.1177/1352458511431076〉. Le Fo , M., e al., 2011. Mul iple scle osis and access o heal hca e in he Pays de la Loi e egion: p elimina y s udy based on 130 sel -applied double ques ionnai es. Ann. Phys. Rehabil. Med. 54 (3), 156–171. (A ailable a ). 〈h p://linkinghub.else ie . com/ e ie e/pii/S1877065711000285〉. Lea mon h, Y.C., e al., 2016. Mul iple scle osis pa ien s need and wan in o ma ion on exe cise p omo ion om heal hca e p o ide s: a quali a i e s udy. Heal h Expec (A ailable a ). 〈h p://doi.wiley.com/10.1111/hex.12482〉. Lizán, C., e al., 2014. T ea men adhe ence and o he pa ien - epo ed ou comes as cos de e minan s in mul iple scle osis: a e iew o he li e a u e. Pa ien P e e . Adhe ence 1653–1664. (A ailable a ). 〈h p://www.do ep ess.com/ ea men - adhe ence-and-o he -pa ien - epo ed-ou comes-as-cos -de e m-pee - e iewed- a icle-PPA〉. Luga esi, A., e al., 2013. Risk-benefi conside a ions in he ea men o elapsing- e- mi ing mul iple scle osis. Neu opsychia . Dis. T ea . 9, 893–914. (A ailable a ). 〈h p://www.do ep ess.com/ isk-benefi -conside a ions-in- he- ea men -o - elapsing- emi ing-mu-pee - e iewed-a icle-NDT〉. Ma ie, R.A., e al., 2017. Inc eased incidence o psychia ic diso de s in immune-medi- a ed inflamma o y disease. J. Psychosom. Res. 101, 17–23. (A ailable a ). 〈h p:// www.ncbi.nlm.nih.go /pubmed/28867419〉. Meh , S.R., Zimme man, M.P., 2015. Re iewing he unme needs o pa ien s wi h mul iple scle osis. Am. Heal h D ug Benefi s 8 (8), 426–431. (A ailable a ). 〈h p://www. ncbi.nlm.nih.go /pubmed/26702334〉. Moccia, M., e al., 2016. Can people wi h mul iple scle osis ac ually unde s and wha hey ead in he In e ne age? J. Clin. Neu osci. 25, 167–168. (A ailable a ). 〈h p:// linkinghub.else ie .com/ e ie e/pii/S0967586815005147〉. O eja-Gue a a, C., e al., 2017. New insigh s in o he bu den and cos s o mul iple scle osis in Eu ope: esul s o Spain. Mul . Scle . J. 23 (2S), 166–178. (A ailable a ). 〈h p://jou nals.sagepub.com/doi/10.1177/1352458517708672〉. Reed Johnson, F., e al., 2009. Mul iple scle osis pa ien s—benefi - isk p e e ences: se - ious ad e se e en isks e sus ea men efficacy. J. Neu ol. 256 (4), 554–562. h p://dx.doi.o g/10.1007/s00415-009-0084-2. (A ailable a ). 〈h p://link. sp inge .com/10.1007/s00415-009-0084-2〉. Reen, G.K., e al., 2017a. In e en ions o suppo isk and benefi unde s anding o disease-modi ying d ugs in Mul iple Scle osis pa ien s: a sys ema ic e iew. Pa ien Educ. Couns. 100 (6), 1031–1048. (A ailable a ). 〈h p://linkinghub.else ie .com/ e ie e/pii/S073839911630581X〉. Reen, G.K., e al., 2017b. Mul iple scle osis pa ien s’unde s anding and p e e ences o isks and benefi s o disease-modi ying d ugs: a sys ema ic e iew. J. Neu ol. Sci. 375, 107–122. (A ailable a ). 〈h p://www.ncbi.nlm.nih.go /pubmed/28320112〉. Rieckmann, P., e al., 2013. 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. 260 (2), 462–469. (A ailable a ). 〈h p://link. sp inge .com/10.1007/s00415-012-6656-6〉. Rieckmann, P., e al., 2015. 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. Mul . Scle . Rela . Diso d. 4 (3), 202–218. (A ailable a ). 〈h p://linkinghub.else ie .com/ e ie e/pii/S2211034815000243〉. San o o, M., e al., 2016. Dep ession in mul iple scle osis: effec o b ain de i ed neu- o ophic ac o Val66Me polymo phism and disease pe cep ion. Eu . J. Neu ol. 23 (3), 630–640. (A ailable a ). 〈h p://doi.wiley.com/10.1111/ene.12913〉. Saposnik, G., e al., 2016. Decision making unde unce ain y, he apeu ic ine ia, and physicians’ isk p e e ences in he managemen o mul iple scle osis (DIScUTIR MS). BMC Neu ol. 16 (1), 58. (A ailable a ). 〈h p://bmcneu ol.biomedcen al.com/ a icles/10.1186/s12883-016-0577-4〉. Sola i, A., 2014. Effec i e communica ion a he poin o mul iple scle osis diagnosis. Mul . Scle . J. 20 (4), 397–402. (A ailable a ). 〈h p://msj.sagepub.com/cgi/doi/10. 1177/1352458514523061〉. Tin o é, M. e al., 2016. The S a e o Mul iple Scle osis : Cu en Insigh in o he Pa ien / Heal h Ca e P o ide Rela ionship, T ea men Challenges, and Sa is ac ion. pp. 33–45. h p://dx.doi.o g/10.2147/PPA.S115090. Vick ey, B.G., e al., 1999. Gene al neu ologis and subspecialis ca e o mul iple scle osis: pa ien s’pe cep ions. Neu ology 53 (6), 1190–1197. (A ailable a ). 〈h p://www.ncbi.nlm.nih.go /pubmed/10522871〉. Wilski, M., Tasiemski, T., 2016. Illness pe cep ion, ea men belie s, sel -es eem, and sel - efficacy as co ela es o sel -managemen in mul iple scle osis. Ac a Neu ol. Scand. 133 (5), 338–345. (A ailable a ). 〈h p://doi.wiley.com/10.1111/ane.12465〉. W igh , J., 2013. Only you calami y: he beginnings o ac i ism by and o people wi h AIDS. Am. J. Public Heal h 103 (10), 1788–1798. (A ailable a ). 〈h p://ajph. aphapublica ions.o g/doi/abs/10.2105/AJPH.2013.301381〉. P. Rieckmann e al. Mul iple Scle osis and Rela ed Diso de s 19 (2018) 153–160 160