Kristina Simacek|John J. Ko|Debbie Moreton|Štefan Varga|Kristen Johnson|Božena Kati?
The Impact of Disease-Modifying Therapy Access Barriers on People With Multiple Sclerosis: Mixed-Methods Study
PatientsLikeMe (United States)|PatientsLikeMe (United States)|Jefferson College|Thomas Jefferson University|PatientsLikeMe (United States)
background united states people relapsingremitting multiple sclerosis rrms face difficulty accessing diseasemodifying therapies dmts insurance pharmacy provider policiesthese barriers associated poor adherence negative health outcomes objectivethe goals study describe overall occurrence difficulties delays associated gaining access dmts among people rrms assess dmt adherence periods reduced access contextualize patients journey receipt prescription dmt obtaining taking medication faced access barriersmethods recruited usbased adults selfreporting rrms webbased health datasharing social network patientslikemeindividuals invited complete webbased survey reported diagnosis rrms prescribed dmt msfollowup phone interviews conducted 10 respondents reported experiencing msrelated relapse time experienced challenges accessing dmtsresults among 507 survey completers nearly half either currently experiencing issue related dmt assess difficulty accessing dmt past 233507 460the frequently reported reasons access difficulty authorization requirements insurance companies past issues 78182 429 current issues 942 21 high outofpocket costs past issues 54182 297 current issues 1342 31about half 2039 51 participants current access issues third 68165 412 past issues went without medication could access prescribed dmtrelapses reported periods reduced dmt access almost half 56118 475 past issues nearly half 2245 49 current issuesresolving access issues involved multiple stakeholder agents often coordinated patientled effortamong resolved issues half 57119 479 reported doctors office staff involved half 48119 403 involved third 39119 328 reported drug manufacturer involved resolving issuefollowup interviews revealed financial burden associated obtaining prescribed dmt led nonadherenceadditionally participants felt dmt treatment delays stress associated obtaining dmt triggered relapses worsened ms conclusionsthis study expands current research using patientcentered mixedmethods approach describe barriers ms treatment process resolve barriers perceived impact treatment barriers outcomesissues related dmt access occur frequently individuals often serving agents navigating access difficulties obtain medicationssupport resolution dmt access needed prevent undue stress nonadherence