J. Med. Internet Res. - Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe.


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CKGROUND: Evaluating a new use for an existing drug can be expensive and time consuming. Providers and patients must all too often rely upon their own individual-level experience to inform clinical practice, which generates only anecdotal and unstructured data. While academic-led clinical trials are occasionally conducted to test off-label uses of drugs with expired patents, this is relatively rare. In this work, we explored how a patient-centered online research platform could supplement traditional trials to create a richer understanding of medical products postmarket by efficiently aggregating structured patient-reported data. PatientsLikeMe is a tool for patients, researchers, and caregivers (currently 82,000 members across 11 condition-based communities) that helps users make treatment decisions, manage symptoms, and improve outcomes. Members enter demographic information, longitudinal treatment, symptoms, outcome data, and treatment evaluations. These are reflected back as longitudinal health profiles and aggregated reports. Over the last 3 years, patients have entered treatment histories and evaluations on thousands of medical products. These data may aid in evaluating the effectiveness and safety of some treatments more efficiently and over a longer period of time course than is feasible through traditional trials.OBJECTIVE: The objective of our study was to examine the illustrative cases of amitriptyline and modafinil - drugs commonly used off-label.METHODS: We analyzed patient-reported treatment histories and drug evaluations for each drug, examining prevalence, treatment purpose, and evaluations of effectiveness, side effects, and burden.RESULTS: There were 1948 treatment histories for modafinil and 1394 treatment reports for amitriptyline reported across five PatientsLikeMe communities (multiple sclerosis, Parkinson's disease, mood conditions, fibromyalgia/chronic fatigue syndrome, and amyotrophic lateral sclerosis). In these reports, the majority of members reported taking the drug for off-label uses. Only 34 of the 1755 (1%) reporting purpose used modafinil for an approved purpose (narcolepsy or sleep apnea). Only 104 out of 1197 members (9%) reported taking amitriptyline for its approved indication, depression. Members taking amitriptyline for off-label purposes rated the drug as more effective than those who were taking it for its approved indication. While dry mouth is a commonly reported side effect of amitriptyline for most patients, 88 of 220 (40%) of people with amyotrophic lateral sclerosis on the drug reported taking advantage of this side effect to treat their symptom of excess saliva.CONCLUSIONS: Patient-reported outcomes, like those entered within PatientsLikeMe, offer a unique real-time approach to understand utilization and performance of treatments across many conditions. These patient-reported data can provide a new source of evidence about secondary uses and potentially identify targets for treatments to be studied systematically in traditional efficacy trials.

Resumo Limpo

ckground evalu new use exist drug can expens time consum provid patient must often reli upon individuallevel experi inform clinic practic generat anecdot unstructur data academicl clinic trial occasion conduct test offlabel use drug expir patent relat rare work explor patientcent onlin research platform supplement tradit trial creat richer understand medic product postmarket effici aggreg structur patientreport data patientslikem tool patient research caregiv current member across conditionbas communiti help user make treatment decis manag symptom improv outcom member enter demograph inform longitudin treatment symptom outcom data treatment evalu reflect back longitudin health profil aggreg report last year patient enter treatment histori evalu thousand medic product data may aid evalu effect safeti treatment effici longer period time cours feasibl tradit trialsobject object studi examin illustr case amitriptylin modafinil drug common use offlabelmethod analyz patientreport treatment histori drug evalu drug examin preval treatment purpos evalu effect side effect burdenresult treatment histori modafinil treatment report amitriptylin report across five patientslikem communiti multipl sclerosi parkinson diseas mood condit fibromyalgiachron fatigu syndrom amyotroph later sclerosi report major member report take drug offlabel use report purpos use modafinil approv purpos narcolepsi sleep apnea member report take amitriptylin approv indic depress member take amitriptylin offlabel purpos rate drug effect take approv indic dri mouth common report side effect amitriptylin patient peopl amyotroph later sclerosi drug report take advantag side effect treat symptom excess salivaconclus patientreport outcom like enter within patientslikem offer uniqu realtim approach understand util perform treatment across mani condit patientreport data can provid new sourc evid secondari use potenti identifi target treatment studi systemat tradit efficaci trial

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