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| 1 | Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey显示文摘BACKGROUND Inflammatory bowel diseases(IBD) is a heterogenous, lifelong disease, with an unpredictable and potentially progressive course, that may impose negative psychosocial impact on patients.While informed patients with chronic illness have improved adherence and outcomes, previous research showed that the majority of IBD patients receive insufficient information regarding their disease.The large heterogeneity of IBD and the wide range of information topics makes a one-size fits all knowledge resource overwhelming and cumbersome.We hypothesized that different patient profiles may have different and specific information needs, the identification of which will allow building personalized computer-based information resources in the future.AIM To evaluate the scope of disease-related knowledge among IBD patients and determine whether different patient profiles drive unique information needs.METHODS We conducted a nationwide survey addressing hospital-based IBD clinics.A Total of 571 patients completed a 28-item questionnaire, rating the amount of information received at time of diagnosis and the importance of information, as perceived by participants, for a newly diagnosed patient, and for the participants themselves, at current time.We performed an exploratory factor analysis of the crude responses aiming to create a number of representative knowledge domains(factors), and analyzed the responses of a set of 15 real-life patient profiles generated by the study team.RESULTS Participants gave low ratings for the amount of information received at disease onset(averaging 0.9/5) and high ratings for importance, both for the newly diagnosed patients(mean 4.2/5) and for the participants themselves at current time(mean 3.5/5).Factor analysis grouped responses into six informationdomains.The responses of selected profiles, compared with the rest of the participants, yielded significant associations(defined as a difference in rating of >0.5 points with a P < 0.05).Patients with active disease showed a higher interest in work-disability, stress-coping, and therapy-complications.Patients newly diagnosed at age > 50, and patients with long-standing disease(> 10 years)showed less interest in work-disability.Patients in remission with mesalamine or no therapy showed less interest in all domains except for nutrition and long-term complications.CONCLUSION We demonstrate unmet patient information needs.Analysis of various patient profiles revealed associations with specific information topics, paving the way for building patient-tailored information resources. | Saleh Daher Tawfik Khoury Ariel Benson John R Walker Oded Hammerman Ron Kedem Timna Naftali Rami Eliakim Ofer Ben-Bassat Charles N Bernstein Eran Israeli | 2019 | World Journal of Gastroenterology2019，25，30： | 3 |
| 2 | The role of vitamin D in the immunopathogenesis of allergic skin diseases显示文摘 | Benson AA Toh JA Vernon N | 2012 | Allergy2012，67，3： | 1 |
| 3 | Progress toward analysis of D8/17 binding to B cells in children with obsessive compulsive disordcr and/or chronic tic disordcr显示文摘 | Murphy TK Benson N Zaytoun A | 2001 | J Neuroimmunol2001，120，12： | 1 |
| 4 | Wisteria floribunda lectin is associated with specific cell types in the ventral cochlear nucleus of the gerbil, Meriones unguiculatus 显示文摘 | Cant N B Benson C G | 2006 | Hearing Research2006，6，216： | 1 |
| 5 | Agglomeration phenomena in fluidized bed combustion of straw 显示文摘 | Zygarlicke C J Steadman E N Benson S A | 1990 | Prog Energy Combust Sci1990，16，： | 1 |
| 6 | A synergy control motif within the attenuator domin of CCAAT/enhancer-binding protein α inhibits transcriptional synergy through its PIASy-enhanced modification by SUMO-1 or SUMO-3显示文摘 | Subramanian L Benson M D I(n)iguez-Lluhí J A | 2003 | J Biol Chem2003，278，11： | 1 |
| 7 | Dietary energy source and density modulate the expression of immunologic stress in chicks显示文摘 | Benson B N Calvert C C Roura E | 1993 | J Nutr1993，123，： | 1 |
| 8 | Angiographic classification of the isolated, persistently patent ductus arteriosus and implications for percutaneous catheter occlusion显示文摘 | KRICHENKO A BENSON L N BURROWS P | 1989 | Am J Cardiol1989，67，4： | 1 |
| 9 | Subareolar dissection for duct ectasia and periareolar sepsis显示文摘 | Hartley M N Stewart J Benson E A | | 0，，10： | 1 |
| 10 | The major genetic determinants of HIV-1control affect HLA class I peptide presentation显示文摘 | International HIV Controllers Study Pereyra F Jia X McLaren P J Telenti A de Bakker P I Walker B D Ripke S Brumme C J Pulit S L Carrington M Kadie C M Carlson J M Heckerman D Graham R R Plenge R M Deeks S G Gianniny L Crawford G Sullivan J Gonzalez E Davies L Camargo A Moore JM Beattie N Gupta S Crenshaw A Burtt N P Guiducci C Gupta N Gao X Qi Y Yuki Y Piechocka-Trocha A Cutrell E Rosenberg R Moss K L Lemay P O'Leary J Schaefer T Verma P Toth I Block B Baker B Rothchild A Lian J Proudfoot J Alvino D M Vine S Addo M M Allen T M Altfeld M Henn M R Le Gall S Streeck H Haas D W Kuritzkes D R Robbins G K Shafer R W Gulick R M Shikuma C M Haubrich R Riddler S Sax P E Daar E S Ribaudo H J Agan B Agarwal S Ahern R L Allen B L Altidor S Altschuler E L Ambardar S Anastos K Anderson B Anderson V Andrady U Antoniskis D Bangsberg D Barbaro D Barrie W Bartczak J Barton S Basden P Basgoz N Bazner S Bellos N C Benson A M Berger J Bernard N F Bernard A M Birch C Bodner S J Bolan R K Boudreaux E T Bradley M Braun J F Brndjar J E Brown S J Brown K Brown S T Burack J Bush LM Cafaro V Campbell O Campbell J Carlson R H Carmichael J K Casey K K Cavacuiti C Celestin G Chambers S T Chez N Chirch L M Cimoch P J Cohen D Cohn LE Conway B Cooper D A Cornelson B Cox D T Cristofano M V Cuchural G Jr Czartoski J L Dahman J M Daly J S Davis B T Davis K Davod S M DeJesus E Dietz C A Dunham E Dunn M E Ellerin T B Eron J J Fangman J J Farel C E Ferlazzo H Fidler S Fleenor-Ford A Frankel R Freedberg K A French N K Fuchs JD Fuller J D Gaberman J Gallant J E Gandhi R T Garcia E Garmon D Gathe J C Jr Gaultier C R Gebre W Gilman F D Gilson I Goepfert P A Gottlieb M S Goulston C Groger R K Gurley T D Haber S Hardwicke R Hardy W D Harrigan P R Hawkins T N Heath S Hecht F M Henry W K Hladek M Hoffman R P Horton J M Hsu R K Huhn G D Hunt P Hupert M J Illeman M L Jaeger H Jellinger R M John M Johnson J A Johnson K L Johnson H Johnson K Joly J Jordan W C Kauffman C A Khanlou H Killian R K Kim A Y Kim D D Kinder C A Kirchner J T Kogelman L Kojic E M Korthuis P T Kurisu W Kwon D S LaMar M Lampiris H Lanzafame M Lederman M M Lee D M Lee J M Lee M J Lee E T Lemoine J Levy J A Llibre J M Liguori M A Little S J Liu A Y Lopez A J Loutfy M R Loy D Mohammed D Y Man A Mansour M K Marconi V C Markowitz M Marques R Martin J N Martin H L Jr Mayer K H McElrath M J McGhee T A McGovern B H McGowan K McIntyre D Mcleod GX Menezes P Mesa G Metroka CE Meyer-Olson D Miller A O Montgomery K Mounzer K C Nagami E H Nagin I Nahass R G Nelson M O Nielsen C Norene D L O'Connor D H Ojikutu B O Okulicz J Oladehin O O Oldfield E C Olender S A Ostrowski M Owen WF Jr Pae E Parsonnet J Pavlatos A M Perlmutter A M Pierce M N Pincus J M Pisani L Price L J Proia L Prokesch R C Pujet H C Ramgopal M Rathod A Rausch M Ravishankar J Rhame F S Richards C S Richman D D Rodes B Rodriguez M Rose R C 3rd Rosenberg E S Rosenthal D Ross P E Rubin D S Rumbaugh E Saenz L Salvaggio M R Sanchez WC Sanjana V M Santiago S Schmidt W Schuitemaker H Sestak P M Shalit P Shay W Shirvani V N Silebi V I Sizemore J M Jr Skolnik P R Sokol-Anderson M Sosman J M Stabile P Stapleton J T Starrett S Stein F Stellbrink H J Sterman FL Stone V E Stone D R Tambussi G Taplitz R A Tedaldi E M Telenti A Theisen W Torres R Tosiello L Tremblay C Tribble M A Trinh P D Tsao A Ueda P Vaccaro A Valadas E Vanig T J Vecino I Vega V M Veikley W Wade B H Walworth C Wanidworanun C Ward D J Warner D A Weber R D Webster D Weis S Wheeler D A White D J Wilkins E Winston A Wlodaver C G van't Wout A Wright D P Yang O O Yurdin D L Zabukovic B W Zachary K C Zeeman B Zhao M | 2010 | Science2010，330，6010： | 1 |
| 11 | The application of mitochondrial DNA typing to the study of white Caucasian genetic identification显示文摘 | Sullivan K M Benson N Gill P | 1993 | International Journal of Legal Medicine1993，106，2： | 1 |
| 12 | Outcomes of Transcatheter Embolization in the Treatment of Coronary Artery Fistulas显示文摘 | Okubo M Nykanen D Benson L N | 2001 | Catheter Cardiovasc Interv2001，52，： | 1 |
| 13 | Mangement of patients atri- al fibrillation:a statement for health care professionals from the subcom- mittee on electrocardiography and e]ectrophysiology 显示文摘 | Prystowsky E N Benson J D Woodrow M D | 1996 | American Heart Association Circulation1996，206，10： | 1 |
| 14 | Effects of standard glu?cocorticoid replacement therapies on subjective well-being, a ran?domized, double-blind, crossover study in patients with seconda?ry adrenal insufficiency显示文摘 | Benson S Neumann P Unger N et a1 | 2012 | EurJ Endocrinol2012，167，5： | 1 |
| 15 | The application of mitochondrial DNA typing to the study of white Caucasian genetic identification 显示文摘 | Sullivan KM Benson N Gill P | 1993 | Int J Legal Med1993，106，2： | 1 |
| 16 | Contribution of developmental assets to the prediction of thriving among adolescents 显示文摘 | SCALES P C BENSON P L LEFFERT N | 2000 | Applied Developmental Science2000，4，1： | 1 |
| 17 | Embolization of an acute renal arteriovenous fistula following a stab wound:case report and review of the literature显示文摘 | Benson D A Stockinger Z T McSwain N E Jr | 2005 | Am Surg2005，71，： | 1 |
| 18 | Polymer Microcarrier Exhibiting Zero-order Release显示文摘 | Landgraf W Li N H Benson J R | 2003 | Drug Delivery Technology2003，3，1： | 1 |
| 19 | Estimation of heats of formation of organic compounds by additivity methods 显示文摘 | Cohen N Benson S W | 1993 | Chem Rev1993，93，： | 1 |
| 20 | Dietary energy source and density modulate the expression of immunologic stress in chicks 显示文摘 | Benson B N Calvert C C Roura E | 1993 | JNutr1993，123，： | 1 |
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