Published on in Vol 3, No 3 (2014): July-September

Web Search Behavior and Information Needs of People With Multiple Sclerosis: Focus Group Study and Analysis of Online Postings

Web Search Behavior and Information Needs of People With Multiple Sclerosis: Focus Group Study and Analysis of Online Postings

Web Search Behavior and Information Needs of People With Multiple Sclerosis: Focus Group Study and Analysis of Online Postings

Journals

  1. Rieckmann P, Centonze D, Elovaara I, Giovannoni G, Havrdová E, Kesselring J, Kobelt G, Langdon D, Morrow S, Oreja-Guevara C, Schippling S, Thalheim C, Thompson H, Vermersch P, Aston K, Bauer B, Demory C, Giambastiani M, Hlavacova J, Nouvet-Gire J, Pepper G, Pontaga M, Rogan E, Rogalski C, van Galen P, Ben-Amor A. Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: A combined perspective from the MS in the 21st Century Steering Group. Multiple Sclerosis and Related Disorders 2018;19:153 View
  2. Mazanderani F, Hughes N, Hardy C, Sillence E, Powell J. Health information work and the enactment of care in couples and families affected by Multiple Sclerosis. Sociology of Health & Illness 2019;41(2):395 View
  3. Risson V, Ghodge B, Bonzani I, Korn J, Medin J, Saraykar T, Sengupta S, Saini D, Olson M. Linked Patient-Reported Outcomes Data From Patients With Multiple Sclerosis Recruited on an Open Internet Platform to Health Care Claims Databases Identifies a Representative Population for Real-Life Data Analysis in Multiple Sclerosis. Journal of Medical Internet Research 2016;18(9):e249 View
  4. O’Donnell J, Jelinek G, Gray K, De Livera A, Brown C, Neate S, O’Kearney E, Taylor K, Bevens W, Weiland T. Therapeutic utilization of meditation resources by people with multiple sclerosis: insights from an online patient discussion forum. Informatics for Health and Social Care 2020;45(4):374 View
  5. Baeza-Yates R, Sangal P, Villoslada P, Fasano A. Burden of neurological diseases in the US revealed by web searches. PLOS ONE 2017;12(5):e0178019 View
  6. Reen G, Silber E, Langdon D. Multiple sclerosis patients' understanding and preferences for risks and benefits of disease-modifying drugs: A systematic review. Journal of the Neurological Sciences 2017;375:107 View
  7. Rahn A, Köpke S, Backhus I, Kasper J, Anger K, Untiedt B, Alegiani A, Kleiter I, Mühlhauser I, Heesen C. Nurse-led immunotreatment DEcision Coaching In people with Multiple Sclerosis (DECIMS) – Feasibility testing, pilot randomised controlled trial and mixed methods process evaluation. International Journal of Nursing Studies 2018;78:26 View
  8. Babac A, Litzkendorf S, Schmidt K, Pauer F, Damm K, Frank M, Graf von der Schulenburg J. Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians. Interactive Journal of Medical Research 2017;6(2):e23 View
  9. Colombo C, Confalonieri P, Rovaris M, La Mantia L, Galeazzi P, Silena Trevisan , Pariani A, Gerevini S, De Stefano N, Guglielmino R, Caserta C, Mosconi P, Filippini G. The IN-DEEP project “INtegrating and Deriving Evidence, Experiences, Preferences”: a web information model on magnetic resonance imaging for people with multiple sclerosis. Journal of Neurology 2020;267(8):2421 View
  10. Giunti G, Mylonopoulou V, Rivera Romero O. More Stamina, a Gamified mHealth Solution for Persons with Multiple Sclerosis: Research Through Design. JMIR mHealth and uHealth 2018;6(3):e51 View
  11. Mauseth T, Hjälmhult E. Adolescents' experiences on coping with parental multiple sclerosis: a grounded theory study. Journal of Clinical Nursing 2016;25(5-6):856 View
  12. Reen G, Silber E, Langdon D. Interventions to support risk and benefit understanding of disease-modifying drugs in Multiple Sclerosis patients: A systematic review. Patient Education and Counseling 2017;100(6):1031 View
  13. Kantor D, Bright J, Burtchell J. Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Patient Education. Neurology and Therapy 2018;7(1):23 View
  14. Filippini G, Del Giovane C, Clerico M, Beiki O, Mattoscio M, Piazza F, Fredrikson S, Tramacere I, Scalfari A, Salanti G. Treatment with disease-modifying drugs for people with a first clinical attack suggestive of multiple sclerosis. Cochrane Database of Systematic Reviews 2017 View
  15. Synnot A, Hawkins M, Merner B, Summers M, Filippini G, Osborne R, Shapland S, Cherry C, Stuckey R, Milne C, Mosconi P, Colombo C, Hill S. Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis. Health Science Reports 2018;1(3):e24 View
  16. Lavorgna L, Lanzillo R, Brescia Morra V, Abbadessa G, Tedeschi G, Bonavita S. Social Media and Multiple Sclerosis in the Posttruth Age. Interactive Journal of Medical Research 2017;6(2):e18 View
  17. Sillence E, Hardy C, Briggs P, Harris P. How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?. Health Informatics Journal 2016;22(4):1045 View
  18. Bakker C, Stephenson C, Stephenson E, Chaves D. Public Funding and Open Access to Research: A Review of Canadian Multiple Sclerosis Research. Journal of Medical Internet Research 2017;19(2):e52 View
  19. Kimmerle J, Bientzle M, Cress U. Personal Experiences and Emotionality in Health-Related Knowledge Exchange in Internet Forums: A Randomized Controlled Field Experiment Comparing Responses to Facts Vs Personal Experiences. Journal of Medical Internet Research 2014;16(12):e277 View
  20. Apolinário-Hagen J, Menzel M, Hennemann S, Salewski C. Acceptance of Mobile Health Apps for Disease Management Among People With Multiple Sclerosis: Web-Based Survey Study. JMIR Formative Research 2018;2(2):e11977 View
  21. Sun Y, Zhang Y, Gwizdka J, Trace C. Consumer Evaluation of the Quality of Online Health Information: Systematic Literature Review of Relevant Criteria and Indicators. Journal of Medical Internet Research 2019;21(5):e12522 View
  22. Colombo C, Filippini G, Synnot A, Hill S, Guglielmino R, Traversa S, Confalonieri P, Mosconi P, Tramacere I. Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project. BMC Neurology 2016;16(1) View
  23. Rahn A, Riemann-Lorenz K, Alegiani A, Pust G, van de Roemer A, Schmitz L, Vettorazzi E, Köpke S, Heesen C. Comprehension of confidence intervals in audio-visual patient information materials for people with multiple sclerosis (COCO-MS): A web-based randomised controlled, parallel group trial. Patient Education and Counseling 2021;104(5):1132 View
  24. Rahn A, Solari A, Beckerman H, Nicholas R, Wilkie D, Heesen C, Giordano A. “I Will Respect the Autonomy of My Patient”. International Journal of MS Care 2020;22(6):285 View
  25. Ma D, Zuo M, Liu L. The Information Needs of Chinese Family members of Cancer Patients in the Online Health Community: What and Why?. Information Processing & Management 2021;58(3):102517 View
  26. Ben-Zacharia A, Bethoux F, Volandes A. Self-Perceived Knowledge and Comfort Discussing Palliative Care and End-of-Life Issues among Professionals Managing Neuroinflammatory Diseases. Journal of Palliative Medicine 2021;24(5):725 View
  27. Reen G, Silber E, Langdon D. Improving MS patients’ understanding of treatment risks and benefits in clinical consultations: A randomised crossover trial. Multiple Sclerosis and Related Disorders 2021;49:102737 View
  28. Rahn A, Wenzel L, Icks A, Stahmann A, Scheiderbauer J, Grentzenberg K, Vomhof M, Montalbo J, Friede T, Heesen C, Köpke S. Development and evaluation of an interactive web-based decision-making programme on relapse management for people with multiple sclerosis (POWER@MS2)—study protocol for a randomised controlled trial. Trials 2021;22(1) View
  29. Wollmann K, der Keylen P, Tomandl J, Meerpohl J, Sofroniou M, Maun A, Voigt-Radloff S. The information needs of internet users and their requirements for online health information—A scoping review of qualitative and quantitative studies. Patient Education and Counseling 2021;104(8):1904 View
  30. Liu L, Shi L. Does the ownership of health website matter? A cross-sectional study on Chinese consumer behavior. International Journal of Medical Informatics 2021;152:104485 View
  31. Liu L, Shi L. Chinese Patients’ Intention to Use Different Types of Internet Hospitals: Cross-sectional Study on Virtual Visits. Journal of Medical Internet Research 2021;23(8):e25978 View

Books/Policy Documents

  1. King H, Slattery D. Research Anthology on Diagnosing and Treating Neurocognitive Disorders. View
  2. King H, Slattery D. Impacts of Information Technology on Patient Care and Empowerment. View
  3. Filippini G, Clerico M, Beiki O, Mattoscio M, Piazza F, Del Giovane C, Fredrikson S, Tramacere I, Scalfari A, Filippini G. Cochrane Database of Systematic Reviews. View