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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 | Amelioration of is-chemreperfusion injury in rat intestine by pentoxifyline-mediated inhibit of xanthine oxidase显示文摘 | Hammerman C Goldschmidt D Caplan MS | 1999 | J Pediatr Gastrol Nutr1999，29，1： | 1 |
| 3 | The serine/ threonine kinase Pim-2 is a transcriptionally regulated apopotot-ic inhibitor显示文摘 | FOX C J HAMMERMAN P S CINALLI R M | 2003 | Genes Dev2003，17，15： | 1 |
| 4 | Very low-birthweight-infants conceived by in vitro fertilization are not at higher risk for mortality and morbidity: a population-based study显示文摘 | Schimmel MS Hammerman C Lusky A | 2006 | Fertil Steril2006，85，4： | 1 |
| 5 | Fasting glucose is an important independent risk factor for 30-day mortality in patients with acute myocardial infarction显示文摘 | Suleiman M Hammerman H Boulos M | 2005 | Circulation2005，111，6： | 1 |
| 6 | Relation between red cell distribution width and clinical outcomes after acute myocar- dial infarction显示文摘 | Dabbah S Hammerman H Markiewicz W | 2010 | Am J Cardiol2010，105，3： | 1 |
| 7 | In hospital and 1-year mortality of patients who develop worsening renal function following acute ST-elevation myocardial infarction 显示文摘 | Goldberg A Hammerman H Petcherski S | 2005 | Am Heart J2005，150，2： | 1 |
| 8 | Relation between red cell distribution width and clinical outcomes after acute myocardial infarction显示文摘 | Dabbah S Hammerman H Markiewicz W | | 0，，： | 1 |
| 9 | Bilirubin in the premature:toxic waste or natural defense显示文摘 | Goldstein R Kaplan M | 1998 | Clin Chem1998，44，12： | 1 |
| 10 | Clindamycin treatment of invasive infections caused by community-acquired, methicillin-resistant and methicillin-susceptible Staphylococcus aureus in children显示文摘 | Martinez-Aguilar G Hammerman WA Masan EO Jr | 2003 | Pediatr infect Dis J2003，22，7： | 1 |
| 11 | Mutations in the DDR2 kinase gene identify a novel therapeutic target in squamous cell lung cancer显示文摘 | Hammerman PS Sos ML Ramos AH | 2011 | Cancer Discov2011，1，1： | 1 |
| 12 | Incidence, predictors and outcome ofdrug-eluting stent thrombosis in real-world practice显示文摘 | Blich M Zeidan-Shwiri T Petcherski S Osherov A Hammerman H | 2010 | J Invasive Cardiol ?2010，22，： | 1 |
| 13 | Arthroscopic repair of full-thickness tears of the rotator cuff显示文摘 | Gartsman GM Khan M Hammerman SM | | 0，，06： | 1 |
| 14 | Mapping the hallmarks of lung adenocarcinoma with massively parallel sequencing显示文摘 | Imielinski M Berger AH Hammerman PS | 2012 | Cell2012，150，6： | 1 |
| 15 | Mutations in the DDR2 ki-nase gene identify a novel therapeutic target in squamous cell lung cancer显示文摘 | Hammerman PS Sos ML Ramos AH | | 0，，： | 1 |
| 16 | Triiodothyronine stimulates renal epidermal growth factor expression in adult rat显示文摘 | Rogers SA Miller SB Hammerman MR | 1995 | Am J Physiol1995，268，12： | 1 |
| 17 | Full-thickness tears:arthroscopic repair显示文摘 | Gartsman GM Hammerman SM | | 0，，01： | 1 |
| 18 | Mutations in the DDR2 kinase gene identify a novel therapeutic target in squamous cell lung cancer显示文摘 | Hammerman PS Sos ML Ramous AH | 2011 | Cancer Discov2011，1，1： | 1 |
| 19 | Relation between red cell distribution width and clinical outcomes after acute myocardial infarction显示文摘 | Dabbah S Hammerman HjMarkiewicz W | 2010 | AmJ Cardiol2010，105，3： | 1 |
| 20 | Bilirubin genetics for the nongeneticist:hereditary defects of neonatal bilirubin conjugation显示文摘 | Kaplan M Hammerman C Maisel MJ | 2003 | Peditrics2003，111，4： | 1 |
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