Year 2018 / Volume 110 / Number 5
Original
Using the internet to evaluate the opinion of patients with inflammatory bowel disease with regard to the available information

274-284

DOI: 10.17235/reed.2018.5331/2017

Carmen Martín Fernández, Carlos Maroto Martín, Luis Fernández Salazar,

Abstract
Background and aims: patients need information for shared decision making. The aims of the study were to ascertain how patients with inflammatory bowel disease (IBD) felt about the information available and the way that their doctors informed them. In addition, how patients used the internet and factors that predicted a positive information evaluation were also assessed. Method: a 39-item survey was designed that was distributed via the internet, principally using a Spanish Facebook site. Results: four hundred and twenty completed surveys were received. Patients rated the information available with a mean of 8 points (maximum of 10) and 71% felt that their doctor informed them well or very well. Various deficiencies were found such as little information available at the time of diagnosis (58%); doubts after seeing the specialist (70%); insufficient information about IBD complications, disease course and dietary aspects; and a lack of appropriate internet webpage recommendations from specialists or pharmacists. Patients ranked the internet fourth as an information source, followed by their specialist, patient associations and other patients. Independent predictive factors of feeling well informed (≥ 8) included age, OR 1.539 (CI 1.047-2.261), p = 0.028; education, OR 1.544 (CI 1.110-2.147), p = 0,010; IBD evolution time, OR 1.267 (CI 1.003-1,601), p = 0.047; and good or very good information from the specialist, OR 3.262 (CI 2.425-4.388), p < 0.001. Conclusions: patients generally felt that they were well informed. However, there were aspects that needed improvement, such as information for younger patients or a lower education level, the information provided at diagnosis, information about specific or insufficiently covered IBD aspects and suggestions from doctors about high quality websites.
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References
1. Bernstein KI, Promislow S, Carr R, Rawsthorne P, Walker JR, Bernstein CN. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflammatory bowel diseases. 2011;17(2):590-8.
2. Becker HM, Grigat D, Ghosh S, Kaplan GG, Dieleman L, Wine E, et al. Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey. Canadian journal of gastroenterology & hepatology. 2015;29(2):77-84.
3. Catalan-Serra I, Huguet-Malaves JM, Minguez M, Torrella E, Paredes JM, Vazquez N, et al. Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps. Gastroenterologia y hepatologia. 2015;38(6):355-63.
4. Snaith RP, Zigmond AS. The hospital anxiety and depression scale. British medical journal (Clinical research ed). 1986;292(6516):344.
5. Herrero MJ, Blanch J, Peri JM, De Pablo J, Pintor L, Bulbena A. A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General hospital psychiatry. 2003;25(4):277-83.
6. Moser G, Tillinger W, Sachs G, Genser D, Maier-Dobersberger T, Spiess K, et al. Disease-related worries and concerns: a study on out-patients with inflammatory bowel disease. European journal of gastroenterology & hepatology. 1995;7(9):853-8.
7. Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn's and Colitis Knowledge Score. European journal of gastroenterology & hepatology. 2014;26(1):1-5.
8. Colombara F, Martinato M, Girardin G, Gregori D. Higher levels of knowledge reduce health care costs in patients with inflammatory bowel disease. Inflammatory bowel diseases. 2015;21(3):615-22.
9. Jones SC, Gallacher B, Lobo AJ, Axon AT. A patient knowledge questionnaire in inflammatory bowel disease. Journal of clinical gastroenterology. 1993;17(1):21-4.
10. Eaden JA, Abrams K, Mayberry JF. The Crohn's and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. The American journal of gastroenterology. 1999;94(12):3560-6.
11. Keegan D, McDermott E, Byrne K, Moloney D, Doherty GA, Mulcahy HE. Development, validation and clinical assessment of a short questionnaire to assess disease-related knowledge in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2013;48(2):183-8.
12. Pittet V, Vaucher C, Maillard MH, Girardin M, de Saussure P, Burnand B, et al. Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort? PloS one. 2016;11(3):e0150620.
13. Wong S, Walker JR, Carr R, Graff LA, Clara I, Promislow S, et al. The information needs and preferences of persons with longstanding inflammatory bowel disease. Canadian journal of gastroenterology = Journal canadien de gastroenterologie. 2012;26(8):525-31.
14. Pittet V, Rogler G, Mottet C, Froehlich F, Michetti P, de Saussure P, et al. Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2014;49(6):662-73.
15. Selinger CP, Eaden J, Selby W, Jones DB, Katelaris P, Chapman G, et al. Patients' knowledge of pregnancy-related issues in inflammatory bowel disease and validation of a novel assessment tool ('CCPKnow'). Alimentary pharmacology & therapeutics. 2012;36(1):57-63.
16. Berroa E, Fernandez-Salazar L, Rodriguez McCullough N, Garrote Adrados JA. Are Worries and Concerns Information Side Effects? Inflammatory bowel diseases. 2015;21(9):E22.
17. Panes J, de Lacy AM, Sans M, Soriano A, Pique JM. [Frequent Internet use among Catalan patients with inflammatory bowel disease]. Gastroenterologia y hepatologia. 2002;25(5):306-9.
18. Angelucci E, Orlando A, Ardizzone S, Guidi L, Sorrentino D, Fries W, et al. Internet use among inflammatory bowel disease patients: an Italian multicenter survey. European journal of gastroenterology & hepatology. 2009;21(9):1036-41.
19. Nguyen DL, Rasheed S, Parekh NK. Patterns of Internet use by gastroenterologists in the management and education of patients with inflammatory bowel disease. Southern medical journal. 2014;107(5):320-3.
20. Reich J, Guo L, Hall J, Tran A, Weinberg J, Groshek J, et al. A Survey of Social Media Use and Preferences in Patients with Inflammatory Bowel Disease. Inflammatory bowel diseases. 2016;22(11):2678-87.
21. Elkjaer M, Shuhaibar M, Burisch J, Bailey Y, Scherfig H, Laugesen B, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided 'Constant-care' approach. Gut. 2010;59(12):1652-61.
22. Jackson BD, Gray K, Knowles SR, De Cruz P. EHealth Technologies in Inflammatory Bowel Disease: A Systematic Review. Journal of Crohn's & colitis. 2016;10(9):1103-21.
1. Bernstein KI, Promislow S, Carr R, Rawsthorne P, Walker JR, Bernstein CN. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflammatory bowel diseases. 2011;17(2):590-8.
2. Becker HM, Grigat D, Ghosh S, Kaplan GG, Dieleman L, Wine E, et al. Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey. Canadian journal of gastroenterology & hepatology. 2015;29(2):77-84.
3. Catalan-Serra I, Huguet-Malaves JM, Minguez M, Torrella E, Paredes JM, Vazquez N, et al. Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps. Gastroenterologia y hepatologia. 2015;38(6):355-63.
4. Snaith RP, Zigmond AS. The hospital anxiety and depression scale. British medical journal (Clinical research ed). 1986;292(6516):344.
5. Herrero MJ, Blanch J, Peri JM, De Pablo J, Pintor L, Bulbena A. A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General hospital psychiatry. 2003;25(4):277-83.
6. Moser G, Tillinger W, Sachs G, Genser D, Maier-Dobersberger T, Spiess K, et al. Disease-related worries and concerns: a study on out-patients with inflammatory bowel disease. European journal of gastroenterology & hepatology. 1995;7(9):853-8.
7. Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn's and Colitis Knowledge Score. European journal of gastroenterology & hepatology. 2014;26(1):1-5.
8. Colombara F, Martinato M, Girardin G, Gregori D. Higher levels of knowledge reduce health care costs in patients with inflammatory bowel disease. Inflammatory bowel diseases. 2015;21(3):615-22.
9. Jones SC, Gallacher B, Lobo AJ, Axon AT. A patient knowledge questionnaire in inflammatory bowel disease. Journal of clinical gastroenterology. 1993;17(1):21-4.
10. Eaden JA, Abrams K, Mayberry JF. The Crohn's and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. The American journal of gastroenterology. 1999;94(12):3560-6.
11. Keegan D, McDermott E, Byrne K, Moloney D, Doherty GA, Mulcahy HE. Development, validation and clinical assessment of a short questionnaire to assess disease-related knowledge in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2013;48(2):183-8.
12. Casellas F, Fontanet G, Borruel N, Malagelada JR. The opinion of patients with inflammatory bowel disease on healthcare received. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2004;96(3):174-84.
13. Pittet V, Vaucher C, Maillard MH, Girardin M, de Saussure P, Burnand B, et al. Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort? PloS one. 2016;11(3):e0150620.
14. Wong S, Walker JR, Carr R, Graff LA, Clara I, Promislow S, et al. The information needs and preferences of persons with longstanding inflammatory bowel disease. Canadian journal of gastroenterology = Journal canadien de gastroenterologie. 2012;26(8):525-31.
15. Pittet V, Rogler G, Mottet C, Froehlich F, Michetti P, de Saussure P, et al. Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2014;49(6):662-73.
16. de Castro ML, Sanroman L, Martin A, Figueira M, Martinez N, Hernandez V, et al. Assessing medication adherence in inflammatory bowel diseases. A comparison between a self-administered scale and a pharmacy refill index. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(8):542-51.
17. Selinger CP, Eaden J, Selby W, Jones DB, Katelaris P, Chapman G, et al. Patients' knowledge of pregnancy-related issues in inflammatory bowel disease and validation of a novel assessment tool ('CCPKnow'). Alimentary pharmacology & therapeutics. 2012;36(1):57-63.
18. Berroa E, Fernandez-Salazar L, Rodriguez McCullough N, Garrote Adrados JA. Are Worries and Concerns Information Side Effects? Inflammatory bowel diseases. 2015;21(9):E22.
19. Panes J, de Lacy AM, Sans M, Soriano A, Pique JM. [Frequent Internet use among Catalan patients with inflammatory bowel disease]. Gastroenterologia y hepatologia. 2002;25(5):306-9.
20. Angelucci E, Orlando A, Ardizzone S, Guidi L, Sorrentino D, Fries W, et al. Internet use among inflammatory bowel disease patients: an Italian multicenter survey. European journal of gastroenterology & hepatology. 2009;21(9):1036-41.
21. Nguyen DL, Rasheed S, Parekh NK. Patterns of Internet use by gastroenterologists in the management and education of patients with inflammatory bowel disease. Southern medical journal. 2014;107(5):320-3.
22. Reich J, Guo L, Hall J, Tran A, Weinberg J, Groshek J, et al. A Survey of Social Media Use and Preferences in Patients with Inflammatory Bowel Disease. Inflammatory bowel diseases. 2016;22(11):2678-87.
23. Elkjaer M, Shuhaibar M, Burisch J, Bailey Y, Scherfig H, Laugesen B, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided 'Constant-care' approach. Gut. 2010;59(12):1652-61.
24. Jackson BD, Gray K, Knowles SR, De Cruz P. EHealth Technologies in Inflammatory Bowel Disease: A Systematic Review. Journal of Crohn's & colitis. 2016;10(9):1103-21.
1. Marin-Jimenez I, Gobbo Montoya M, Panadero A, Canas M, Modino Y, Romero de Santos C, et al. Management of the Psychological Impact of Inflammatory Bowel Disease: Perspective of Doctors and Patients-The ENMENTE Project. Inflammatory bowel diseases. 2017;23(9):1492-8.
2. Bernstein KI, Promislow S, Carr R, Rawsthorne P, Walker JR, Bernstein CN. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflammatory bowel diseases. 2011;17(2):590-8.
3. Becker HM, Grigat D, Ghosh S, Kaplan GG, Dieleman L, Wine E, et al. Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey. Canadian journal of gastroenterology & hepatology. 2015;29(2):77-84.
4. Catalan-Serra I, Huguet-Malaves JM, Minguez M, Torrella E, Paredes JM, Vazquez N, et al. Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps. Gastroenterologia y hepatologia. 2015;38(6):355-63.
5. Stjernman H, Tysk C, Almer S, Strom M, Hjortswang H. Worries and concerns in a large unselected cohort of patients with Crohn's disease. Scandinavian journal of gastroenterology. 2010;45(6):696-706.
6. Jelsness-Jorgensen LP, Moum B, Bernklev T. Worries and Concerns among Inflammatory Bowel Disease Patients Followed Prospectively over One Year. Gastroenterology research and practice. 2011;2011:492034.
7. Snaith RP, Zigmond AS. The hospital anxiety and depression scale. British medical journal (Clinical research ed). 1986;292(6516):344.
8. Herrero MJ, Blanch J, Peri JM, De Pablo J, Pintor L, Bulbena A. A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General hospital psychiatry. 2003;25(4):277-83.
9. Moser G, Tillinger W, Sachs G, Genser D, Maier-Dobersberger T, Spiess K, et al. Disease-related worries and concerns: a study on out-patients with inflammatory bowel disease. European journal of gastroenterology & hepatology. 1995;7(9):853-8.
10. Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn's and Colitis Knowledge Score. European journal of gastroenterology & hepatology. 2014;26(1):1-5.
11. Colombara F, Martinato M, Girardin G, Gregori D. Higher levels of knowledge reduce health care costs in patients with inflammatory bowel disease. Inflammatory bowel diseases. 2015;21(3):615-22.
12. Jones SC, Gallacher B, Lobo AJ, Axon AT. A patient knowledge questionnaire in inflammatory bowel disease. Journal of clinical gastroenterology. 1993;17(1):21-4.
13. Eaden JA, Abrams K, Mayberry JF. The Crohn's and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. The American journal of gastroenterology. 1999;94(12):3560-6.
14. Keegan D, McDermott E, Byrne K, Moloney D, Doherty GA, Mulcahy HE. Development, validation and clinical assessment of a short questionnaire to assess disease-related knowledge in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2013;48(2):183-8.
15. Casellas F, Lopez-Vivancos J, Casado A, Malagelada JR. Factors affecting health related quality of life of patients with inflammatory bowel disease. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2002;11(8):775-81.
16. Berroa de la Rosa E, Mora Cuadrado N, Fernandez Salazar L. The concerns of Spanish patients with inflammatory bowel disease as measured by the RFIPC questionnaire. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(3):196-201.
17. Casellas F, Fontanet G, Borruel N, Malagelada JR. The opinion of patients with inflammatory bowel disease on healthcare received. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2004;96(3):174-84.
18. Pittet V, Vaucher C, Maillard MH, Girardin M, de Saussure P, Burnand B, et al. Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort? PloS one. 2016;11(3):e0150620.
19. Wong S, Walker JR, Carr R, Graff LA, Clara I, Promislow S, et al. The information needs and preferences of persons with longstanding inflammatory bowel disease. Canadian journal of gastroenterology = Journal canadien de gastroenterologie. 2012;26(8):525-31.
20. Pittet V, Rogler G, Mottet C, Froehlich F, Michetti P, de Saussure P, et al. Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2014;49(6):662-73.
21. de Castro ML, Sanroman L, Martin A, Figueira M, Martinez N, Hernandez V, et al. Assessing medication adherence in inflammatory bowel diseases. A comparison between a self-administered scale and a pharmacy refill index. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(8):542-51.
22. Selinger CP, Eaden J, Selby W, Jones DB, Katelaris P, Chapman G, et al. Patients' knowledge of pregnancy-related issues in inflammatory bowel disease and validation of a novel assessment tool ('CCPKnow'). Alimentary pharmacology & therapeutics. 2012;36(1):57-63.
23. Berroa E, Fernandez-Salazar L, Rodriguez McCullough N, Garrote Adrados JA. Are Worries and Concerns Information Side Effects? Inflammatory bowel diseases. 2015;21(9):E22.
24. Panes J, de Lacy AM, Sans M, Soriano A, Pique JM. [Frequent Internet use among Catalan patients with inflammatory bowel disease]. Gastroenterologia y hepatologia. 2002;25(5):306-9.
25. Angelucci E, Orlando A, Ardizzone S, Guidi L, Sorrentino D, Fries W, et al. Internet use among inflammatory bowel disease patients: an Italian multicenter survey. European journal of gastroenterology & hepatology. 2009;21(9):1036-41.
26. Nguyen DL, Rasheed S, Parekh NK. Patterns of Internet use by gastroenterologists in the management and education of patients with inflammatory bowel disease. Southern medical journal. 2014;107(5):320-3.
27. Reich J, Guo L, Hall J, Tran A, Weinberg J, Groshek J, et al. A Survey of Social Media Use and Preferences in Patients with Inflammatory Bowel Disease. Inflammatory bowel diseases. 2016;22(11):2678-87.
28. Elkjaer M, Shuhaibar M, Burisch J, Bailey Y, Scherfig H, Laugesen B, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided 'Constant-care' approach. Gut. 2010;59(12):1652-61.
29. Jackson BD, Gray K, Knowles SR, De Cruz P. EHealth Technologies in Inflammatory Bowel Disease: A Systematic Review. Journal of Crohn's & colitis. 2016;10(9):1103-21.
1. Marin-Jimenez I, Gobbo Montoya M, Panadero A, Canas M, Modino Y, Romero de Santos C, et al. Management of the Psychological Impact of Inflammatory Bowel Disease: Perspective of Doctors and Patients-The ENMENTE Project. Inflammatory bowel diseases. 2017;23(9):1492-8.
2. Bernstein KI, Promislow S, Carr R, Rawsthorne P, Walker JR, Bernstein CN. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflammatory bowel diseases. 2011;17(2):590-8.
3. Becker HM, Grigat D, Ghosh S, Kaplan GG, Dieleman L, Wine E, et al. Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey. Canadian journal of gastroenterology & hepatology. 2015;29(2):77-84.
4. Catalan-Serra I, Huguet-Malaves JM, Minguez M, Torrella E, Paredes JM, Vazquez N, et al. Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps. Gastroenterologia y hepatologia. 2015;38(6):355-63.
5. Stjernman H, Tysk C, Almer S, Strom M, Hjortswang H. Worries and concerns in a large unselected cohort of patients with Crohn's disease. Scandinavian journal of gastroenterology. 2010;45(6):696-706.
6. Jelsness-Jorgensen LP, Moum B, Bernklev T. Worries and Concerns among Inflammatory Bowel Disease Patients Followed Prospectively over One Year. Gastroenterology research and practice. 2011;2011:492034.
7. Snaith RP, Zigmond AS. The hospital anxiety and depression scale. British medical journal (Clinical research ed). 1986;292(6516):344.
8. Herrero MJ, Blanch J, Peri JM, De Pablo J, Pintor L, Bulbena A. A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General hospital psychiatry. 2003;25(4):277-83.
9. Moser G, Tillinger W, Sachs G, Genser D, Maier-Dobersberger T, Spiess K, et al. Disease-related worries and concerns: a study on out-patients with inflammatory bowel disease. European journal of gastroenterology & hepatology. 1995;7(9):853-8.
10. Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn's and Colitis Knowledge Score. European journal of gastroenterology & hepatology. 2014;26(1):1-5.
11. Colombara F, Martinato M, Girardin G, Gregori D. Higher levels of knowledge reduce health care costs in patients with inflammatory bowel disease. Inflammatory bowel diseases. 2015;21(3):615-22.
12. Jones SC, Gallacher B, Lobo AJ, Axon AT. A patient knowledge questionnaire in inflammatory bowel disease. Journal of clinical gastroenterology. 1993;17(1):21-4.
13. Eaden JA, Abrams K, Mayberry JF. The Crohn's and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. The American journal of gastroenterology. 1999;94(12):3560-6.
14. Keegan D, McDermott E, Byrne K, Moloney D, Doherty GA, Mulcahy HE. Development, validation and clinical assessment of a short questionnaire to assess disease-related knowledge in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2013;48(2):183-8.
15. Casellas F, Lopez-Vivancos J, Casado A, Malagelada JR. Factors affecting health related quality of life of patients with inflammatory bowel disease. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2002;11(8):775-81.
16. Berroa de la Rosa E, Mora Cuadrado N, Fernandez Salazar L. The concerns of Spanish patients with inflammatory bowel disease as measured by the RFIPC questionnaire. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(3):196-201.
17. Casellas F, Fontanet G, Borruel N, Malagelada JR. The opinion of patients with inflammatory bowel disease on healthcare received. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2004;96(3):174-84.
18. Pittet V, Vaucher C, Maillard MH, Girardin M, de Saussure P, Burnand B, et al. Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort? PloS one. 2016;11(3):e0150620.
19. Wong S, Walker JR, Carr R, Graff LA, Clara I, Promislow S, et al. The information needs and preferences of persons with longstanding inflammatory bowel disease. Canadian journal of gastroenterology = Journal canadien de gastroenterologie. 2012;26(8):525-31.
20. Pittet V, Rogler G, Mottet C, Froehlich F, Michetti P, de Saussure P, et al. Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2014;49(6):662-73.
21. de Castro ML, Sanroman L, Martin A, Figueira M, Martinez N, Hernandez V, et al. Assessing medication adherence in inflammatory bowel diseases. A comparison between a self-administered scale and a pharmacy refill index. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(8):542-51.
22. Selinger CP, Eaden J, Selby W, Jones DB, Katelaris P, Chapman G, et al. Patients' knowledge of pregnancy-related issues in inflammatory bowel disease and validation of a novel assessment tool ('CCPKnow'). Alimentary pharmacology & therapeutics. 2012;36(1):57-63.
23. Berroa E, Fernandez-Salazar L, Rodriguez McCullough N, Garrote Adrados JA. Are Worries and Concerns Information Side Effects? Inflammatory bowel diseases. 2015;21(9):E22.
24. Panes J, de Lacy AM, Sans M, Soriano A, Pique JM. [Frequent Internet use among Catalan patients with inflammatory bowel disease]. Gastroenterologia y hepatologia. 2002;25(5):306-9.
25. Angelucci E, Orlando A, Ardizzone S, Guidi L, Sorrentino D, Fries W, et al. Internet use among inflammatory bowel disease patients: an Italian multicenter survey. European journal of gastroenterology & hepatology. 2009;21(9):1036-41.
26. Nguyen DL, Rasheed S, Parekh NK. Patterns of Internet use by gastroenterologists in the management and education of patients with inflammatory bowel disease. Southern medical journal. 2014;107(5):320-3.
27. Reich J, Guo L, Hall J, Tran A, Weinberg J, Groshek J, et al. A Survey of Social Media Use and Preferences in Patients with Inflammatory Bowel Disease. Inflammatory bowel diseases. 2016;22(11):2678-87.
28. Elkjaer M, Shuhaibar M, Burisch J, Bailey Y, Scherfig H, Laugesen B, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided 'Constant-care' approach. Gut. 2010;59(12):1652-61.
29. Jackson BD, Gray K, Knowles SR, De Cruz P. EHealth Technologies in Inflammatory Bowel Disease: A Systematic Review. Journal of Crohn's & colitis. 2016;10(9):1103-21.
1. Marin-Jimenez I, Gobbo Montoya M, Panadero A, Canas M, Modino Y, Romero de Santos C, et al. Management of the Psychological Impact of Inflammatory Bowel Disease: Perspective of Doctors and Patients-The ENMENTE Project. Inflammatory bowel diseases. 2017;23(9):1492-8.
2. Bernstein KI, Promislow S, Carr R, Rawsthorne P, Walker JR, Bernstein CN. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflammatory bowel diseases. 2011;17(2):590-8.
3. Becker HM, Grigat D, Ghosh S, Kaplan GG, Dieleman L, Wine E, et al. Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey. Canadian journal of gastroenterology & hepatology. 2015;29(2):77-84.
4. Catalan-Serra I, Huguet-Malaves JM, Minguez M, Torrella E, Paredes JM, Vazquez N, et al. Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps. Gastroenterologia y hepatologia. 2015;38(6):355-63.
5. Stjernman H, Tysk C, Almer S, Strom M, Hjortswang H. Worries and concerns in a large unselected cohort of patients with Crohn's disease. Scandinavian journal of gastroenterology. 2010;45(6):696-706.
6. Jelsness-Jorgensen LP, Moum B, Bernklev T. Worries and Concerns among Inflammatory Bowel Disease Patients Followed Prospectively over One Year. Gastroenterology research and practice. 2011;2011:492034.
7. Snaith RP, Zigmond AS. The hospital anxiety and depression scale. British medical journal (Clinical research ed). 1986;292(6516):344.
8. Herrero MJ, Blanch J, Peri JM, De Pablo J, Pintor L, Bulbena A. A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General hospital psychiatry. 2003;25(4):277-83.
9. Moser G, Tillinger W, Sachs G, Genser D, Maier-Dobersberger T, Spiess K, et al. Disease-related worries and concerns: a study on out-patients with inflammatory bowel disease. European journal of gastroenterology & hepatology. 1995;7(9):853-8.
10. Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn's and Colitis Knowledge Score. European journal of gastroenterology & hepatology. 2014;26(1):1-5.
11. Colombara F, Martinato M, Girardin G, Gregori D. Higher levels of knowledge reduce health care costs in patients with inflammatory bowel disease. Inflammatory bowel diseases. 2015;21(3):615-22.
12. Jones SC, Gallacher B, Lobo AJ, Axon AT. A patient knowledge questionnaire in inflammatory bowel disease. Journal of clinical gastroenterology. 1993;17(1):21-4.
13. Eaden JA, Abrams K, Mayberry JF. The Crohn's and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. The American journal of gastroenterology. 1999;94(12):3560-6.
14. Keegan D, McDermott E, Byrne K, Moloney D, Doherty GA, Mulcahy HE. Development, validation and clinical assessment of a short questionnaire to assess disease-related knowledge in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2013;48(2):183-8.
15. Casellas F, Lopez-Vivancos J, Casado A, Malagelada JR. Factors affecting health related quality of life of patients with inflammatory bowel disease. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2002;11(8):775-81.
16. Berroa de la Rosa E, Mora Cuadrado N, Fernandez Salazar L. The concerns of Spanish patients with inflammatory bowel disease as measured by the RFIPC questionnaire. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(3):196-201.
17. Casellas F, Fontanet G, Borruel N, Malagelada JR. The opinion of patients with inflammatory bowel disease on healthcare received. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2004;96(3):174-84.
18. Pittet V, Vaucher C, Maillard MH, Girardin M, de Saussure P, Burnand B, et al. Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort? PloS one. 2016;11(3):e0150620.
19. Wong S, Walker JR, Carr R, Graff LA, Clara I, Promislow S, et al. The information needs and preferences of persons with longstanding inflammatory bowel disease. Canadian journal of gastroenterology = Journal canadien de gastroenterologie. 2012;26(8):525-31.
20. Pittet V, Rogler G, Mottet C, Froehlich F, Michetti P, de Saussure P, et al. Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2014;49(6):662-73.
21. de Castro ML, Sanroman L, Martin A, Figueira M, Martinez N, Hernandez V, et al. Assessing medication adherence in inflammatory bowel diseases. A comparison between a self-administered scale and a pharmacy refill index. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(8):542-51.
22. Selinger CP, Eaden J, Selby W, Jones DB, Katelaris P, Chapman G, et al. Patients' knowledge of pregnancy-related issues in inflammatory bowel disease and validation of a novel assessment tool ('CCPKnow'). Alimentary pharmacology & therapeutics. 2012;36(1):57-63.
23. Berroa E, Fernandez-Salazar L, Rodriguez McCullough N, Garrote Adrados JA. Are Worries and Concerns Information Side Effects? Inflammatory bowel diseases. 2015;21(9):E22.
24. Panes J, de Lacy AM, Sans M, Soriano A, Pique JM. [Frequent Internet use among Catalan patients with inflammatory bowel disease]. Gastroenterologia y hepatologia. 2002;25(5):306-9.
25. Angelucci E, Orlando A, Ardizzone S, Guidi L, Sorrentino D, Fries W, et al. Internet use among inflammatory bowel disease patients: an Italian multicenter survey. European journal of gastroenterology & hepatology. 2009;21(9):1036-41.
26. Nguyen DL, Rasheed S, Parekh NK. Patterns of Internet use by gastroenterologists in the management and education of patients with inflammatory bowel disease. Southern medical journal. 2014;107(5):320-3.
27. Reich J, Guo L, Hall J, Tran A, Weinberg J, Groshek J, et al. A Survey of Social Media Use and Preferences in Patients with Inflammatory Bowel Disease. Inflammatory bowel diseases. 2016;22(11):2678-87.
28. Elkjaer M, Shuhaibar M, Burisch J, Bailey Y, Scherfig H, Laugesen B, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided 'Constant-care' approach. Gut. 2010;59(12):1652-61.
29. Jackson BD, Gray K, Knowles SR, De Cruz P. EHealth Technologies in Inflammatory Bowel Disease: A Systematic Review. Journal of Crohn's & colitis. 2016;10(9):1103-21.
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2. Bernstein KI, Promislow S, Carr R, Rawsthorne P, Walker JR, Bernstein CN. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflammatory bowel diseases. 2011;17(2):590-8.
3. Becker HM, Grigat D, Ghosh S, Kaplan GG, Dieleman L, Wine E, et al. Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey. Canadian journal of gastroenterology & hepatology. 2015;29(2):77-84.
4. Catalan-Serra I, Huguet-Malaves JM, Minguez M, Torrella E, Paredes JM, Vazquez N, et al. Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps. Gastroenterologia y hepatologia. 2015;38(6):355-63.
5. Stjernman H, Tysk C, Almer S, Strom M, Hjortswang H. Worries and concerns in a large unselected cohort of patients with Crohn's disease. Scandinavian journal of gastroenterology. 2010;45(6):696-706.
6. Jelsness-Jorgensen LP, Moum B, Bernklev T. Worries and Concerns among Inflammatory Bowel Disease Patients Followed Prospectively over One Year. Gastroenterology research and practice. 2011;2011:492034.
7. Snaith RP, Zigmond AS. The hospital anxiety and depression scale. British medical journal (Clinical research ed). 1986;292(6516):344.
8. Herrero MJ, Blanch J, Peri JM, De Pablo J, Pintor L, Bulbena A. A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General hospital psychiatry. 2003;25(4):277-83.
9. Moser G, Tillinger W, Sachs G, Genser D, Maier-Dobersberger T, Spiess K, et al. Disease-related worries and concerns: a study on out-patients with inflammatory bowel disease. European journal of gastroenterology & hepatology. 1995;7(9):853-8.
10. Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn's and Colitis Knowledge Score. European journal of gastroenterology & hepatology. 2014;26(1):1-5.
11. Colombara F, Martinato M, Girardin G, Gregori D. Higher levels of knowledge reduce health care costs in patients with inflammatory bowel disease. Inflammatory bowel diseases. 2015;21(3):615-22.
12. Jones SC, Gallacher B, Lobo AJ, Axon AT. A patient knowledge questionnaire in inflammatory bowel disease. Journal of clinical gastroenterology. 1993;17(1):21-4.
13. Eaden JA, Abrams K, Mayberry JF. The Crohn's and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. The American journal of gastroenterology. 1999;94(12):3560-6.
14. Keegan D, McDermott E, Byrne K, Moloney D, Doherty GA, Mulcahy HE. Development, validation and clinical assessment of a short questionnaire to assess disease-related knowledge in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2013;48(2):183-8.
15. Casellas F, Lopez-Vivancos J, Casado A, Malagelada JR. Factors affecting health related quality of life of patients with inflammatory bowel disease. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2002;11(8):775-81.
16. Berroa de la Rosa E, Mora Cuadrado N, Fernandez Salazar L. The concerns of Spanish patients with inflammatory bowel disease as measured by the RFIPC questionnaire. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(3):196-201.
17. Casellas F, Fontanet G, Borruel N, Malagelada JR. The opinion of patients with inflammatory bowel disease on healthcare received. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2004;96(3):174-84.
18. Pittet V, Vaucher C, Maillard MH, Girardin M, de Saussure P, Burnand B, et al. Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort? PloS one. 2016;11(3):e0150620.
19. Wong S, Walker JR, Carr R, Graff LA, Clara I, Promislow S, et al. The information needs and preferences of persons with longstanding inflammatory bowel disease. Canadian journal of gastroenterology = Journal canadien de gastroenterologie. 2012;26(8):525-31.
20. Pittet V, Rogler G, Mottet C, Froehlich F, Michetti P, de Saussure P, et al. Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients. Scandinavian journal of gastroenterology. 2014;49(6):662-73.
21. de Castro ML, Sanroman L, Martin A, Figueira M, Martinez N, Hernandez V, et al. Assessing medication adherence in inflammatory bowel diseases. A comparison between a self-administered scale and a pharmacy refill index. Revista espanola de enfermedades digestivas : organo oficial de la Sociedad Espanola de Patologia Digestiva. 2017;109(8):542-51.
22. Selinger CP, Eaden J, Selby W, Jones DB, Katelaris P, Chapman G, et al. Patients' knowledge of pregnancy-related issues in inflammatory bowel disease and validation of a novel assessment tool ('CCPKnow'). Alimentary pharmacology & therapeutics. 2012;36(1):57-63.
23. Berroa E, Fernandez-Salazar L, Rodriguez McCullough N, Garrote Adrados JA. Are Worries and Concerns Information Side Effects? Inflammatory bowel diseases. 2015;21(9):E22.
24. Panes J, de Lacy AM, Sans M, Soriano A, Pique JM. [Frequent Internet use among Catalan patients with inflammatory bowel disease]. Gastroenterologia y hepatologia. 2002;25(5):306-9.
25. Angelucci E, Orlando A, Ardizzone S, Guidi L, Sorrentino D, Fries W, et al. Internet use among inflammatory bowel disease patients: an Italian multicenter survey. European journal of gastroenterology & hepatology. 2009;21(9):1036-41.
26. Nguyen DL, Rasheed S, Parekh NK. Patterns of Internet use by gastroenterologists in the management and education of patients with inflammatory bowel disease. Southern medical journal. 2014;107(5):320-3.
27. Reich J, Guo L, Hall J, Tran A, Weinberg J, Groshek J, et al. A Survey of Social Media Use and Preferences in Patients with Inflammatory Bowel Disease. Inflammatory bowel diseases. 2016;22(11):2678-87.
28. Elkjaer M, Shuhaibar M, Burisch J, Bailey Y, Scherfig H, Laugesen B, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided 'Constant-care' approach. Gut. 2010;59(12):1652-61.
29. Jackson BD, Gray K, Knowles SR, De Cruz P. EHealth Technologies in Inflammatory Bowel Disease: A Systematic Review. Journal of Crohn's & colitis. 2016;10(9):1103-21.
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Martín Fernández C, Maroto Martín C, Fernández Salazar L. Using the internet to evaluate the opinion of patients with inflammatory bowel disease with regard to the available information. 5331/2017


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Publication history

Received: 23/10/2017

Accepted: 24/01/2018

Online First: 12/03/2018

Published: 27/04/2018

Article revision time: 54 days

Article Online First time: 140 days

Article editing time: 186 days


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