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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 | Induction of rat intestinal carcinogenesis with single doses, low and high repeated doses of 1,2-dimethylhydrazine 显示文摘 | Decaens C Gautier R Daher N | 1989 | Carcinogenesis1989，10，1： | 1 |
| 3 | Sulfur mustard induces apoptosis in cultured normal human airway epithelial cells:evidence of a dominant caspase-8-mediated pathway and differential cellular responses显示文摘 | Ray R Keyser B Benton B Daher A SimbulanRosenthal CM Rosenthal DS | 2008 | Drug Chem Toxicol2008，31，1： | 1 |
| 4 | Adipose stromal/ stem cells: basic and transla- tional advances: the IFATS collection 显示文摘 | DAHER S R JOHNSTONE B H PHINNEY D G | 2008 | Stem Cells2008，26，： | 1 |
| 5 | Impairment in the aversive memory of mice in the inhibitory avoidance task but not in the elevated plus maze through intra-amygdala injections of histamine显示文摘 | Daher F Mattioli R | 2015 | Pharmacol Biochem Behav2015，135，： | 1 |
| 6 | A case of death due to ibogaine use for heroin addiction: Case report 显示文摘 | Jalal S Daher E Hilu R | 2013 | Am J Addict2013，22，3： | 1 |
| 7 | Tavangarian QoS-Oriented Load Balancing for WLANs 显示文摘 | Daher R D | 2006 | First IEEE workshop OpCommin Berlin Germany2006，，： | 1 |
| 8 | direct inactiviation of viruses by human granulocyte defensins显示文摘 | Daher K A Selsted E M Lehrer R I | 1986 | J Virol1986，，60： | 1 |
| 9 | Time course and clinical characteristics of infection in critically ill patients receiving packed red blood cell transfusion显示文摘 | Rachoin JS Daher R Schorr C | 2009 | Microbiology2009，97，4： | 1 |
| 10 | Bioremediation of oil contaminated soil: microbiological methods for feasibility assessment and eld evaluation显示文摘 | Balba M T Awadhi A N Daher A R | 1998 | J Microbiol Methods1998，32，2： | 1 |
| 11 | Bioremediatlon of oil contaminated soil: Microbiological methods for feasibility assessment and eld evaluation显示文摘 | Balba M T Awadhi A N Daher A R | 1998 | J Microbial Methods1998，32，2： | 1 |
| 12 | Interaction of human defensins with Escherchia coli:mechenism of bactericidal activity显示文摘 | LEHRER R I BARTON A DAHER K A | 1994 | Clin Invest1994，94，： | 1 |
| 13 | The survival of ultrashort locking-taper implants显示文摘 | Urdaneta R A Daher S Leary J | 2012 | Int J Oral Maxillofac Implants2012，27，3： | 1 |
| 14 | Direct inactivation of viruses by human granulocyte defensins显示文摘 | DAHER K A SELSTED M E LEHRER R I | 1986 | J Virol1986，60，3： | 1 |
| 15 | The fallacy of the BUN : creatinine ratio in critically ill patients 显示文摘 | Rachoin JS Daher R Moussallem C | 2012 | Nephrol Dial Transplant2012，27，6： | 1 |
| 16 | Direct inactivation of viruses by human granulocyte defensins显示文摘 | Daher K A Selsted E M Lehrer R I | 1986 | J Viral1986，60，： | 1 |
| 17 | Bcl - 2 and post - term placentas 显示文摘 | Daher S Guimaraes AJ Mattar R | 2008 | Am J Reprod Immunol2008，60，2： | 1 |
| 18 | Direct inactivation of viruses by human granulocyte defensins显示文摘 | Daher K A Selsted M E Lehrer R I | 1986 | J Virol1986，60，3： | 1 |
| 19 | Acute kidney injury in an infectious disease intensive care unit-an assessment of prognostic factors显示文摘 | Daher E F Marques C N Lima R S | 2008 | Swiss Med Wkly2008，138，910： | 1 |
| 20 | Interaction of human defensins with Escherichia coli:mechanism of bactericidal activity显示文摘 | Lehrer R J Barton A Daher K A | 1989 | J Clin Invest1989，84，： | 1 |
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