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

Tópicos

{ data(2317) use(1299) case(1017) }
{ decis(3086) make(1611) patient(1517) }
{ drug(1928) target(777) effect(648) }
{ treatment(1704) effect(941) patient(846) }
{ health(1844) social(1437) communiti(874) }
{ data(3963) clinic(1234) research(1004) }
{ assess(1506) score(1403) qualiti(1306) }
{ take(945) account(800) differ(722) }
{ health(3367) inform(1360) care(1135) }
{ can(774) often(719) complex(702) }
{ patient(2315) diseas(1263) diabet(1191) }
{ studi(2440) review(1878) systemat(933) }
{ control(1307) perform(991) simul(935) }
{ chang(1828) time(1643) increas(1301) }
{ algorithm(1844) comput(1787) effici(935) }
{ risk(3053) factor(974) diseas(938) }
{ time(1939) patient(1703) rate(768) }
{ method(1557) propos(1049) approach(1037) }
{ howev(809) still(633) remain(590) }
{ import(1318) role(1303) understand(862) }
{ ehr(2073) health(1662) electron(1139) }
{ result(1111) use(1088) new(759) }
{ case(1353) use(1143) diagnosi(1136) }
{ age(1611) year(1155) adult(843) }
{ sequenc(1873) structur(1644) protein(1328) }
{ method(1219) similar(1157) match(930) }
{ network(2748) neural(1063) input(814) }
{ motion(1329) object(1292) video(1091) }
{ clinic(1479) use(1117) guidelin(835) }
{ design(1359) user(1324) use(1319) }
{ visual(1396) interact(850) tool(830) }
{ monitor(1329) mobil(1314) devic(1160) }
{ state(1844) use(1261) util(961) }
{ medic(1828) order(1363) alert(1069) }
{ estim(2440) model(1874) function(577) }
{ model(3404) distribut(989) bayesian(671) }
{ imag(1947) propos(1133) code(1026) }
{ data(1737) use(1416) pattern(1282) }
{ inform(2794) health(2639) internet(1427) }
{ system(1976) rule(880) can(841) }
{ measur(2081) correl(1212) valu(896) }
{ imag(1057) registr(996) error(939) }
{ bind(1733) structur(1185) ligand(1036) }
{ featur(3375) classif(2383) classifi(1994) }
{ imag(2830) propos(1344) filter(1198) }
{ imag(2675) segment(2577) method(1081) }
{ surgeri(1148) surgic(1085) robot(1054) }
{ framework(1458) process(801) describ(734) }
{ problem(2511) optim(1539) algorithm(950) }
{ error(1145) method(1030) estim(1020) }
{ learn(2355) train(1041) set(1003) }
{ concept(1167) ontolog(924) domain(897) }
{ extract(1171) text(1153) clinic(932) }
{ data(1714) softwar(1251) tool(1186) }
{ model(2220) cell(1177) simul(1124) }
{ care(1570) inform(1187) nurs(1089) }
{ general(901) number(790) one(736) }
{ method(984) reconstruct(947) comput(926) }
{ search(2224) databas(1162) retriev(909) }
{ featur(1941) imag(1645) propos(1176) }
{ studi(1410) differ(1259) use(1210) }
{ perform(999) metric(946) measur(919) }
{ research(1085) discuss(1038) issu(1018) }
{ system(1050) medic(1026) inform(1018) }
{ model(2341) predict(2261) use(1141) }
{ compound(1573) activ(1297) structur(1058) }
{ perform(1367) use(1326) method(1137) }
{ studi(1119) effect(1106) posit(819) }
{ blood(1257) pressur(1144) flow(957) }
{ spatial(1525) area(1432) region(1030) }
{ record(1888) medic(1808) patient(1693) }
{ model(3480) simul(1196) paramet(876) }
{ research(1218) medic(880) student(794) }
{ patient(2837) hospit(1953) medic(668) }
{ model(2656) set(1616) predict(1553) }
{ signal(2180) analysi(812) frequenc(800) }
{ cost(1906) reduc(1198) effect(832) }
{ group(2977) signific(1463) compar(1072) }
{ sampl(1606) size(1419) use(1276) }
{ gene(2352) biolog(1181) express(1162) }
{ data(3008) multipl(1320) sourc(1022) }
{ first(2504) two(1366) second(1323) }
{ intervent(3218) particip(2042) group(1664) }
{ activ(1138) subject(705) human(624) }
{ patient(1821) servic(1111) care(1106) }
{ use(2086) technolog(871) perceiv(783) }
{ can(981) present(881) function(850) }
{ analysi(2126) use(1163) compon(1037) }
{ structur(1116) can(940) graph(676) }
{ high(1669) rate(1365) level(1280) }
{ cancer(2502) breast(956) screen(824) }
{ use(976) code(926) identifi(902) }
{ use(1733) differ(960) four(931) }
{ implement(1333) system(1263) develop(1122) }
{ survey(1388) particip(1329) question(1065) }
{ process(1125) use(805) approach(778) }
{ activ(1452) weight(1219) physic(1104) }
{ method(1969) cluster(1462) data(1082) }
{ method(2212) result(1239) propos(1039) }
{ detect(2391) sensit(1101) algorithm(908) }

Resumo

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

Resumos Similares

Brief. Bioinformatics - Database identifies FDA-approved drugs with potential to be repurposed for treatment of orphan diseases. ( 0,653686127418003 )
Wiley Interdiscip Rev Syst Biol Med - Emerging clinical applications in cardiovascular pharmacogenomics. ( 0,608380954778653 )
J Am Med Inform Assoc - Electronic recording and reporting system for tuberculosis in China: experience and opportunities. ( 0,606923013470832 )
AMIA Annu Symp Proc - Predicting adverse drug events from personal health messages. ( 0,604756059120958 )
BMC Med Inform Decis Mak - Establishing a web-based integrated surveillance system for early detection of infectious disease epidemic in rural China: a field experimental study. ( 0,597343676642602 )
Int J Health Geogr - Spatially explicit multi-criteria decision analysis for managing vector-borne diseases. ( 0,593131455382456 )
Int J Health Geogr - Selection for resistance to oseltamivir in seasonal and pandemic H1N1 influenza and widespread co-circulation of the lineages. ( 0,585655441425652 )
Comput. Biol. Med. - Comparative structural modeling and docking studies of uricase: possible implication in enzyme supplementation therapy for hyperuricemic disorders. ( 0,576185080778588 )
BMC Med Inform Decis Mak - Development of ClickClinica: a novel smartphone application to generate real-time global disease surveillance and clinical practice data. ( 0,571533727232189 )
IEEE J Biomed Health Inform - Leveraging social supports for improving personal expertise on ACL reconstruction and rehabilitation. ( 0,56586578751848 )
AMIA Annu Symp Proc - Using design principles to foster understanding of complex health concepts in consumer informatics tools. ( 0,562776550824601 )
Telemed J E Health - A new paradigm for disease surveillance in Vietnam. ( 0,562614867418672 )
J. Med. Internet Res. - The complex relationship of realspace events and messages in cyberspace: case study of influenza and pertussis using tweets. ( 0,56167504860394 )
J Am Med Inform Assoc - Healthcare information technology's relativity problems: a typology of how patients' physical reality, clinicians' mental models, and healthcare information technology differ. ( 0,554998342011994 )
J Am Med Inform Assoc - Facilitating adverse drug event detection in pharmacovigilance databases using molecular structure similarity: application to rhabdomyolysis. ( 0,549318832926199 )
J Am Med Inform Assoc - Using administrative medical claims data to supplement state disease registry systems for reporting zoonotic infections. ( 0,546504420542587 )
J Am Med Inform Assoc - A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research. ( 0,542393459075269 )
Med Decis Making - Cognitive biases and heuristics in medical decision making: a critical review using a systematic search strategy. ( 0,539606647574083 )
J Am Med Inform Assoc - Assessment of administrative claims data for public health reporting of Salmonella in Tennessee. ( 0,534842764324686 )
J Chem Inf Model - Drug-disease association and drug-repositioning predictions in complex diseases using causal inference-probabilistic matrix factorization. ( 0,534309977824037 )
BMC Med Inform Decis Mak - Incorporating patient and family preferences into evidence-based medicine. ( 0,531740031235406 )
J Am Med Inform Assoc - Participatory surveillance of diabetes device safety: a social media-based complement to traditional FDA reporting. ( 0,527833517689195 )
Int J Health Geogr - Injury surveillance in low-resource settings using Geospatial and Social Web technologies. ( 0,525397864553468 )
J. Med. Internet Res. - Scoping review on search queries and social media for disease surveillance: a chronology of innovation. ( 0,524983618710982 )
J Biomed Inform - LabeledIn: cataloging labeled indications for human drugs. ( 0,5229891671113 )
J Am Med Inform Assoc - Combining structured and unstructured data to identify a cohort of ICU patients who received dialysis. ( 0,521269708733715 )
Comput. Biol. Med. - Cladograms with Path to Event (ClaPTE): a novel algorithm to detect associations between genotypes or phenotypes using phylogenies. ( 0,519755582590075 )
BMC Med Inform Decis Mak - A Bayesian spatio-temporal approach for real-time detection of disease outbreaks: a case study. ( 0,519717656156926 )
AMIA Annu Symp Proc - Revisiting the EBM decision model to formalize non-compliance with computerized CPGs: results in the management of breast cancer with OncoDoc2. ( 0,519701464503258 )
J Am Med Inform Assoc - The EpiCanvas infectious disease weather map: an interactive visual exploration of temporal and spatial correlations. ( 0,517386531357808 )
BMC Med Inform Decis Mak - HERALD (health economics using routine anonymised linked data). ( 0,517178736379194 )
BMC Med Inform Decis Mak - Do personal stories make patient decision aids more effective? A critical review of theory and evidence. ( 0,515276800162437 )
Healthc (Amst) - Kenya's voluntary male medical circumcision program: Translatable lessons for both domestic and international programs. ( 0,514808503630613 )
BMC Med Inform Decis Mak - Managing protected health information in distributed research network environments: automated review to facilitate collaboration. ( 0,514407167980427 )
J Telemed Telecare - Use of telehealth for patients referred to a retrieval service: timing, destination, mode of transport, escort level and patient care. ( 0,513712517400425 )
J. Med. Internet Res. - An internet-based epidemiological investigation of the outbreak of H7N9 Avian influenza A in China since early 2013. ( 0,513263403578518 )
Comput. Biol. Med. - Preclinical evaluation and molecular docking of 4-phenyl-1-Napthyl phenyl acetamide (4P1NPA) from Streptomyces sp. DPTB16 as a potent antifungal compound. ( 0,509688726181203 )
Comput Methods Programs Biomed - IDD Info: a software to manage surveillance data of Iodine Deficiency Disorders. ( 0,508849298079716 )
J Biomed Inform - Using chief complaints for syndromic surveillance: a review of chief complaint based classifiers in North America. ( 0,506347334844034 )
J. Med. Internet Res. - Guess who's not coming to dinner? Evaluating online restaurant reservations for disease surveillance. ( 0,503555746932718 )
J Am Med Inform Assoc - Workshop on using natural language processing applications for enhancing clinical decision making: an executive summary. ( 0,503530409109233 )
Comput. Biol. Med. - Assessment of cognitive flexibility in real life using virtual reality: a comparison of healthy individuals and schizophrenia patients. ( 0,50322310377361 )
Spat Spatiotemporal Epidemiol - Companion animal disease surveillance: a new solution to an old problem? ( 0,502519549722491 )
Med Decis Making - All stories are not alike: a purpose-, content-, and valence-based taxonomy of patient narratives in decision aids. ( 0,501867580144504 )
Med Biol Eng Comput - Electrochemotherapy: technological advancements for efficient electroporation-based treatment of internal tumors. ( 0,498548101734535 )
Int J Health Geogr - Advancements in web-database applications for rabies surveillance. ( 0,498268471385453 )
AMIA Annu Symp Proc - A new model for collaboration: building CDA documents in MDHT. ( 0,496949444526273 )
Int J Health Geogr - Review of software for space-time disease surveillance. ( 0,495197831504899 )
Int J Health Geogr - Using Google Street View for systematic observation of the built environment: analysis of spatio-temporal instability of imagery dates. ( 0,49498627542862 )
Med Decis Making - What is known about parents' treatment decisions? A narrative review of pediatric decision making. ( 0,493422409412904 )
Med Decis Making - The decision making control instrument to assess voluntary consent. ( 0,492734458024083 )
Med Decis Making - Decision coaching to prepare patients for making health decisions: a systematic review of decision coaching in trials of patient decision AIDS. ( 0,491871116425965 )
Med Decis Making - Exploring the response shift effect on the quality of life of patients with schizophrenia: an application of the random forest method. ( 0,49027118141764 )
J Biomed Inform - Visualization and analytics tools for infectious disease epidemiology: a systematic review. ( 0,489909979086692 )
Res Synth Methods - Bayesian network meta-analysis for unordered categorical outcomes with incomplete data. ( 0,488798588381181 )
Med Decis Making - Use of natural health products: how does being natural affect choice? ( 0,487736691031518 )
AMIA Annu Symp Proc - Using animation as an information tool to advance health research literacy among minority participants. ( 0,487583123600182 )
BMC Med Inform Decis Mak - Summary of data reported to CDC's national automated biosurveillance system, 2008. ( 0,48699355338001 )
Med Decis Making - How much information can metabolic syndrome provide? An application of information theory. ( 0,485174752994143 )
J. Med. Internet Res. - Importance of Internet surveillance in public health emergency control and prevention: evidence from a digital epidemiologic study during avian influenza A H7N9 outbreaks. ( 0,485083004332054 )
Med Decis Making - Determining the impact of informed choice: separating treatment effects from the effects of choice and selection in randomized trials. ( 0,483870374492584 )
Comput. Biol. Med. - Time-series analysis in the medical domain: a study of Tacrolimus administration and influence on kidney graft function. ( 0,482346730471397 )
Med Decis Making - Validation of SURE, a four-item clinical checklist for detecting decisional conflict in patients. ( 0,481022863491339 )
Int J Health Geogr - Estimating the geographic distribution of human Tanapox and potential reservoirs using ecological niche modeling. ( 0,480191830490988 )
AMIA Annu Symp Proc - Data quality and fitness for purpose of routinely collected data--a general practice case study from an electronic practice-based research network (ePBRN). ( 0,47856736861628 )
J Chem Inf Model - A mechanistic hypothesis for the cytochrome P450-catalyzed cis-trans isomerization of 4-hydroxytamoxifen: an unusual redox reaction. ( 0,478478235118113 )
J Clin Monit Comput - Metabolic monitors as a diagnostic tool. ( 0,477902952934474 )
AMIA Annu Symp Proc - FaceReview: supporting interactive exploration of linked heterogeneous datasets for unilateral cleft lip and palate. ( 0,477096453379081 )
J Biomed Inform - VisualDecisionLinc: a visual analytics approach for comparative effectiveness-based clinical decision support in psychiatry. ( 0,475616116423411 )
Comput Methods Programs Biomed - Computer simulation of structured treatment interruption for HIV infection. ( 0,475538713715646 )
J Am Med Inform Assoc - Influenza surveillance using electronic health records in the American Indian and Alaska Native population. ( 0,474953366582634 )
J. Med. Internet Res. - Quantifying short-term dynamics of Parkinson's disease using self-reported symptom data from an Internet social network. ( 0,474825261570756 )
AMIA Annu Symp Proc - Harnessing a health information exchange to identify surgical device adverse events for urogynecologic mesh. ( 0,474684092806372 )
J Am Med Inform Assoc - Normalized names for clinical drugs: RxNorm at 6 years. ( 0,474660452144094 )
J Telemed Telecare - The Dr Pheo Blog and virtual counselling for rare diseases. ( 0,474660383291065 )
AMIA Annu Symp Proc - A neighborhood susceptibility index for planning of local physical interventions in response to pandemic influenza outbreaks. ( 0,474492175033035 )
BMC Med Inform Decis Mak - A preliminary exploration of the feasibility of offering men information about potential prostate cancer treatment options before they know their biopsy results. ( 0,474387340875986 )
Healthc (Amst) - Incentivizing shared decision making in the USA--where are we now? ( 0,473019948628923 )
AMIA Annu Symp Proc - The Knowledge Program: an innovative, comprehensive electronic data capture system and warehouse. ( 0,472919855681826 )
J Clin Monit Comput - Intrathecal drug delivery for chronic pain management-scope, limitations and future. ( 0,472028163632426 )
J. Med. Internet Res. - New media use by patients who are homeless: the potential of mHealth to build connectivity. ( 0,471916838948764 )
BMC Med Inform Decis Mak - Making decisions in a complex information environment: evidential preference and information we trust. ( 0,471234672761785 )
Comput Methods Programs Biomed - Improving the work efficiency of healthcare-associated infection surveillance using electronic medical records. ( 0,471180814483354 )
J. Med. Internet Res. - The therapeutic relationship in e-therapy for mental health: a systematic review. ( 0,470966528615711 )
BMC Med Inform Decis Mak - Prediction of gastrointestinal disease with over-the-counter diarrheal remedy sales records in the San Francisco Bay Area. ( 0,470387199437168 )
Spat Spatiotemporal Epidemiol - Review of methods for space-time disease surveillance. ( 0,470008515645166 )
BMC Med Inform Decis Mak - A systematic review of interactive multimedia interventions to promote children's communication with health professionals: implications for communicating with overweight children. ( 0,468130496530031 )
Telemed J E Health - Patient data access and online sleep apnea communities. ( 0,467890168457128 )
J. Med. Internet Res. - In the words of the medical tourist: an analysis of Internet narratives by health travelers to Turkey. ( 0,467747149757299 )
Appl Clin Inform - Understanding why clinicians answer or ignore clinical decision support prompts. ( 0,467505292610739 )
J Biomed Inform - Opportunistic decision making and complexity in emergency care. ( 0,46741891733957 )
AMIA Annu Symp Proc - Timeliness and data element completeness of immunization data in Washington State in 2010: a comparison of data exchange methods. ( 0,465983812544314 )
BMC Med Inform Decis Mak - Refining a brief decision aid in stable CAD: cognitive interviews. ( 0,465630126164598 )
BMC Med Inform Decis Mak - Balancing the presentation of information and options in patient decision aids: an updated review. ( 0,465164781071045 )
AMIA Annu Symp Proc - A legal framework to enable sharing of Clinical Decision Support knowledge and services across institutional boundaries. ( 0,464652269813909 )
J. Med. Internet Res. - Prevalence and Global Health implications of social media in direct-to-consumer drug advertising. ( 0,463282096816613 )
J Clin Monit Comput - Anesthetic agent vapor analyzers and propellants of pressurized meter-dose inhalers. ( 0,46260352899872 )
AMIA Annu Symp Proc - Coverage of rare disease names in standard terminologies and implications for patients, providers, and research. ( 0,462490754252088 )
Artif Intell Med - Optimization of anemia treatment in hemodialysis patients via reinforcement learning. ( 0,461525332306333 )
J. Med. Internet Res. - A lot of action, but not in the right direction: systematic review and content analysis of smartphone applications for the prevention, detection, and management of cancer. ( 0,460713548526018 )