Año 2018 / Volumen 110 / Número 5
Original
Evaluación mediante las redes sociales de la información con la que cuentan los pacientes con EII

274-284

DOI: 10.17235/reed.2018.5331/2017

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

Resumen
Antecedentes y objetivos: para que las decisiones asistenciales sean compartidas por médico y paciente, la información adecuada del paciente es necesaria. Pretendemos conocer la valoración que los pacientes con enfermedad inflamatoria intestinal (EII) hacen de la información con la que cuentan, cómo consideran que les informa su médico, cómo usan internet y qué factores predicen esta mejor valoración de la información. Pacientes y métodos: hemos diseñado una encuesta de 39 ítems que se ha distribuido por internet, principalmente a través de una página española en Facebook. Resultados: hemos recibido 420 encuestas contestadas. Los pacientes puntuaron con un 8 sobre 10 la información con la que contaban y el 71% de ellos consideraba que el médico informaba bien o muy bien. Se detectaron deficiencias, como una información escasa en el momento del diagnóstico en el 58%; dudas después de la consulta en el 25%; deficiencia en la información relativa a las complicaciones de la EII, su evolución o aspectos relativos a la dieta; o la no participación del médico o farmacéutico en la recomendación de páginas de internet adecuadas. Los pacientes consideran internet una fuente de información por detrás del médico, de la asociación de pacientes y de otros pacientes. Los factores predictores independientes de la percepción de estar bien informados (puntuación de 8 o más sobre 10) fueron la edad (OR 1,539 [IC 1,047-2,261], p = 0,028), el nivel de estudios (OR 1,544 [IC 1,110-2,147], p = 0,010), el tiempo de evolución de la EII (OR 1,267 [IC 1,003-1,601], p = 0,047), e información buena o muy buena procedente del médico (OR 3,262 [IC 2,425-4,388], p < 0,001). Conclusiones: los pacientes consideran que están bien informados, pero hay aspectos mejorables como son la información dirigida a los pacientes más jóvenes, con un nivel académico menor, cuando el diagnóstico es reciente, en la información relativa a determinados aspectos de la EII que los pacientes consideran que no son suficientemente tratados, y en el asesoramiento por parte de los médicos de páginas web de calidad.
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Bibliografía
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.
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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Recibido: 23/10/2017

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Prepublicado: 12/03/2018

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