J Telemed Telecare - The Dr Pheo Blog and virtual counselling for rare diseases.

Tópicos

{ data(2317) use(1299) case(1017) }
{ can(774) often(719) complex(702) }
{ patient(1821) servic(1111) care(1106) }
{ survey(1388) particip(1329) question(1065) }
{ general(901) number(790) one(736) }
{ concept(1167) ontolog(924) domain(897) }
{ method(984) reconstruct(947) comput(926) }
{ cancer(2502) breast(956) screen(824) }
{ treatment(1704) effect(941) patient(846) }
{ howev(809) still(633) remain(590) }
{ research(1085) discuss(1038) issu(1018) }
{ system(1050) medic(1026) inform(1018) }
{ ehr(2073) health(1662) electron(1139) }
{ inform(2794) health(2639) internet(1427) }
{ network(2748) neural(1063) input(814) }
{ motion(1329) object(1292) video(1091) }
{ chang(1828) time(1643) increas(1301) }
{ data(1714) softwar(1251) tool(1186) }
{ search(2224) databas(1162) retriev(909) }
{ featur(1941) imag(1645) propos(1176) }
{ studi(1410) differ(1259) use(1210) }
{ visual(1396) interact(850) tool(830) }
{ research(1218) medic(880) student(794) }
{ patient(2837) hospit(1953) medic(668) }
{ age(1611) year(1155) adult(843) }
{ health(1844) social(1437) communiti(874) }
{ use(976) code(926) identifi(902) }
{ use(1733) differ(960) four(931) }
{ result(1111) use(1088) new(759) }
{ decis(3086) make(1611) patient(1517) }
{ model(3404) distribut(989) bayesian(671) }
{ imag(1947) propos(1133) code(1026) }
{ data(1737) use(1416) pattern(1282) }
{ system(1976) rule(880) can(841) }
{ measur(2081) correl(1212) valu(896) }
{ imag(1057) registr(996) error(939) }
{ bind(1733) structur(1185) ligand(1036) }
{ sequenc(1873) structur(1644) protein(1328) }
{ method(1219) similar(1157) match(930) }
{ featur(3375) classif(2383) classifi(1994) }
{ imag(2830) propos(1344) filter(1198) }
{ imag(2675) segment(2577) method(1081) }
{ patient(2315) diseas(1263) diabet(1191) }
{ take(945) account(800) differ(722) }
{ studi(2440) review(1878) systemat(933) }
{ assess(1506) score(1403) qualiti(1306) }
{ 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) }
{ clinic(1479) use(1117) guidelin(835) }
{ algorithm(1844) comput(1787) effici(935) }
{ extract(1171) text(1153) clinic(932) }
{ method(1557) propos(1049) approach(1037) }
{ design(1359) user(1324) use(1319) }
{ control(1307) perform(991) simul(935) }
{ model(2220) cell(1177) simul(1124) }
{ care(1570) inform(1187) nurs(1089) }
{ case(1353) use(1143) diagnosi(1136) }
{ data(3963) clinic(1234) research(1004) }
{ risk(3053) factor(974) diseas(938) }
{ perform(999) metric(946) measur(919) }
{ import(1318) role(1303) understand(862) }
{ 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) }
{ health(3367) inform(1360) care(1135) }
{ model(3480) simul(1196) paramet(876) }
{ monitor(1329) mobil(1314) devic(1160) }
{ state(1844) use(1261) util(961) }
{ model(2656) set(1616) predict(1553) }
{ medic(1828) order(1363) alert(1069) }
{ 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) }
{ time(1939) patient(1703) rate(768) }
{ 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) }
{ drug(1928) target(777) effect(648) }
{ implement(1333) system(1263) develop(1122) }
{ estim(2440) model(1874) function(577) }
{ 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

Patients with suspected or diagnosed rare diseases face challenges. Their own physicians usually do not have a large experience in a particular rare disease, specialists may not be easily accessible, and medical knowledge on rare diseases is either not readily available or too general to be applied to the patients' individual situations. As a specialist with experience in pheochromocytoma, I therefore started a blog to disseminate knowledge about the tumour and to discuss readers' questions about it (http://drpheo.blogspot.com/). Between 2009 and 2014, the blog was viewed 81,223 times and received 1286 comments during the 5-year period. About half of the comments contained mostly questions (questioning comments), including 429 directly on pheochromocytoma (7.5/month). The majority of the questioning comments were about the diagnosis (62%) and natural history (21%) of pheochromocytoma, with the remainder on management (14%) and follow-up or prognosis (4%). Many readers' comments started with encouraging words about the blog and remarked how difficult it was to find useful information on pheochromocytoma elsewhere. Experience with the Dr Pheo Blog suggests that physician specialist-written blogs are potentially an effective and convenient way of providing pertinent knowledge on rare diseases to the public.

Resumo Limpo

patient suspect diagnos rare diseas face challeng physician usual larg experi particular rare diseas specialist may easili access medic knowledg rare diseas either readili avail general appli patient individu situat specialist experi pheochromocytoma therefor start blog dissemin knowledg tumour discuss reader question httpdrpheoblogspotcom blog view time receiv comment year period half comment contain most question question comment includ direct pheochromocytoma month major question comment diagnosi natur histori pheochromocytoma remaind manag followup prognosi mani reader comment start encourag word blog remark difficult find use inform pheochromocytoma elsewher experi dr pheo blog suggest physician specialistwritten blog potenti effect conveni way provid pertin knowledg rare diseas public

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