This paper is in the following e-collection/theme issue:

Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1641)

Published on in Vol 13, No 1 (2011): Jan-Mar

Use of an Online Community to Develop Patient-Reported Outcome Instruments: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)

Use of an Online Community to Develop Patient-Reported Outcome Instruments: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)

Use of an Online Community to Develop Patient-Reported Outcome Instruments: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)

Authors of this article:

Paul Wicks1 Author Orcid Image ;   Michael Massagli1 ;   Amit Kulkarni2 ;   Homa Dastani2
Article Authors Cited by (57) Tweetations (6) Metrics

Journals

  1. Little M, Wicks P, Vaughan T, Pentland A. Quantifying Short-Term Dynamics of Parkinson’s Disease Using Self-reported Symptom Data From an Internet Social Network. Journal of Medical Internet Research 2013;15(1):e20 View
  2. Ožura A, Kovač L, Šega S. Adherence to disease-modifying therapies and attitudes regarding disease in patients with multiple sclerosis. Clinical Neurology and Neurosurgery 2013;115:S6 View
  3. Wicks P, Rasouliyan L, Katic B, Nafees B, Flood E, Sasané R. The real-world patient experience of fingolimod and dimethyl fumarate for multiple sclerosis. BMC Research Notes 2016;9(1) View
  4. Hoffmann F, Trenova A, Llaneza M, Fischer J, Lus G, von Bredow D, Lara N, Lam E, Van Hoef M, Bakshi R. Patient satisfaction with ExtaviPro™ 30G, a new auto-injector for administering interferon β-1b in multiple sclerosis: results from a real-world, observational EXCHANGE study. BMC Neurology 2017;17(1) View
  5. Settle J, Maloni H, Bedra M, Finkelstein J, Zhan M, Wallin M. Monitoring medication adherence in multiple sclerosis using a novel web-based tool: A pilot study. Journal of Telemedicine and Telecare 2016;22(4):225 View
  6. Stirratt M, Dunbar-Jacob J, Crane H, Simoni J, Czajkowski S, Hilliard M, Aikens J, Hunter C, Velligan D, Huntley K, Ogedegbe G, Rand C, Schron E, Nilsen W. Self-report measures of medication adherence behavior: recommendations on optimal use. Translational Behavioral Medicine 2015;5(4):470 View
  7. Kennedy C, Powell J, Payne T, Ainsworth J, Boyd A, Buchan I. Active Assistance Technology for Health-Related Behavior Change: An Interdisciplinary Review. Journal of Medical Internet Research 2012;14(3):e80 View
  8. Yeh E, Grover S, Powell V, Alper G, Banwell B, Edwards K, Gorman M, Graves J, Lotze T, Mah J, Mednick L, Ness J, Obadia M, Slater R, Waldman A, Waubant E, Schwartz C. Impact of an electronic monitoring device and behavioral feedback on adherence to multiple sclerosis therapies in youth: results of a randomized trial. Quality of Life Research 2017;26(9):2333 View
  9. Eysenbach G. Infodemiology and Infoveillance. American Journal of Preventive Medicine 2011;40(5):S154 View
  10. Jones J, Scheidt D, Kaushal R, Carroll C. Assessing the role of patient support services on adherence rates in patients using glatiramer acetate for relapsing-remitting multiple sclerosis. Journal of Medical Economics 2013;16(2):213 View
  11. Kantor D, Bright J, Burtchell J. Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Participatory Medicine. Neurology and Therapy 2018;7(1):37 View
  12. Wicks P, Vaughan T, Massagli M. The multiple sclerosis rating scale, revised (MSRS-R): Development, refinement, and psychometric validation using an online community. Health and Quality of Life Outcomes 2012;10(1):70 View
  13. Thach A, Brown C, Herrera V, Sasane R, Barner J, Ford K, Lawson K. Associations Between Treatment Satisfaction, Medication Beliefs, and Adherence to Disease-Modifying Therapies in Patients with Multiple Sclerosis. International Journal of MS Care 2018;20(6):251 View
  14. Schoor R, Bruce A, Bruce J, Goggin K, Schanfarber B, Bradley‐Ewing A, Thelen J, Glusman M, Lynch S, Strober L, Catley D. Reasons for nonadherence and response to treatment in an adherence intervention trial for relapsing–remitting multiple sclerosis patients. Journal of Clinical Psychology 2019;75(3):380 View
  15. Wicks P, Sulham K, Gnanasakthy A. Quality of Life in Organ Transplant Recipients Participating in an Online Transplant Community. The Patient - Patient-Centered Outcomes Research 2014;7(1):73 View
  16. Hadjigeorgiou G, Dardiotis E, Tsivgoulis G, Doskas T, Petrou D, Makris N, Vlaikidis N, Thomaidis T, Kyritsis A, Fakas N, Treska X, Karageorgiou C, Sotirli S, Giannoulis C, Papadimitriou D, Mylonas I, Kouremenos E, Vlachos G, Georgiopoulos D, Mademtzoglou D, Vikelis M, Zintzaras E, Villoslada P. Observational Study Assessing Demographic, Economic and Clinical Factors Associated with Access and Utilization of Health Care Services of Patients with Multiple Sclerosis under Treatment with Interferon Beta-1b (EXTAVIA). PLoS ONE 2014;9(11):e113933 View
  17. Oprescu F, Campo S, Lowe J, Andsager J, Morcuende J. Online Information Exchanges for Parents of Children With a Rare Health Condition: Key Findings From an Online Support Community. Journal of Medical Internet Research 2013;15(1):e16 View
  18. Cutter G, Veneziano A, Grinspan A, Al-Banna M, Boyko A, Zakharova M, Maida E, Pasic M, Gandhi S, Everts R, Cordioli C, Rossi S. Higher satisfaction and adherence with glatiramer acetate 40 mg/mL TIW vs 20 mg/mL QD in RRMS. Multiple Sclerosis and Related Disorders 2019;33:13 View
  19. Cutter G, Veneziano A, Grinspan A, Al-Banna M, Boyko A, Zakharova M, Maida E, Pasic M, Gandhi S, Everts R, Cordioli C, Rossi S. Satisfaction and adherence with glatiramer acetate 40mg/mL TIW in RRMS after 12 months, and the effect of switching from 20mg/mL QD. Multiple Sclerosis and Related Disorders 2020;40:101957 View
  20. Haase R, Schultheiss T, Kempcke R, Thomas K, Ziemssen T. Use and Acceptance of Electronic Communication by Patients With Multiple Sclerosis: A Multicenter Questionnaire Study. Journal of Medical Internet Research 2012;14(5):e135 View
  21. Schwartz C, Grover S, Powell V, Noguera A, Mah J, Mar S, Mednick L, Banwell B, Alper G, Rensel M, Gorman M, Waldman A, Schreiner T, Waubant E, Yeh E. Risk factors for non-adherence to disease-modifying therapy in pediatric multiple sclerosis. Multiple Sclerosis Journal 2018;24(2):175 View
  22. Ysrraelit M, Fiol M, Peña F, Vanotti S, Terrasa S, Tran V, Montori V, Correale J. Adaptation and validation of a Spanish version of the treatment burden questionnaire in patients with multiple sclerosis. BMC Neurology 2019;19(1) View
  23. McCarrier K, Bull S, Fleming S, Simacek K, Wicks P, Cella D, Pierson R. Concept Elicitation Within Patient-Powered Research Networks: A Feasibility Study in Chronic Lymphocytic Leukemia. Value in Health 2016;19(1):42 View
  24. Bove R, Secor E, Healy B, Musallam A, Vaughan T, Glanz B, Greeke E, Weiner H, Chitnis T, Wicks P, De Jager P, Oreja-Guevara C. Evaluation of an Online Platform for Multiple Sclerosis Research: Patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course. PLoS ONE 2013;8(3):e59707 View
  25. Lejbkowicz I, Caspi O, Miller A. Participatory medicine and patient empowerment towards personalized healthcare in multiple sclerosis. Expert Review of Neurotherapeutics 2012;12(3):343 View
  26. Wicks P, Brandes D, Park J, Liakhovitski D, Koudinova T, Sasane R. Preferred Features of Oral Treatments and Predictors of Non-Adherence: Two Web-Based Choice Experiments in Multiple Sclerosis Patients. interactive Journal of Medical Research 2015;4(1):e6 View
  27. Wicks P, Stamford J, Grootenhuis M, Haverman L, Ahmed S. Innovations in e-health. Quality of Life Research 2014;23(1):195 View
  28. Rothman M, Gnanaskathy A, Wicks P, Papadopoulos E. Can We Use Social Media to Support Content Validity of Patient-Reported Outcome Instruments in Medical Product Development?. Value in Health 2015;18(1):1 View
  29. Nakamura C, Bromberg M, Bhargava S, Wicks P, Zeng-Treitler Q. Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments. Journal of Medical Internet Research 2012;14(3):e90 View
  30. Erbay Ö, Usta Yeşilbalkan Ö, Yüceyar N. Factors Affecting the Adherence to Disease-Modifying Therapy in Patients With Multiple Sclerosis. Journal of Neuroscience Nursing 2018;50(5):291 View
  31. Lysandropoulos A, Havrdova E. ‘Hidden’ factors influencing quality of life in patients with multiple sclerosis. European Journal of Neurology 2015;22(S2):28 View
  32. Glusman M, Bruce A, Thelen J, Smith J, Lynch S, Catley D, Bennett K, Bruce J. Discontinuing Treatment Against Medical Advice: The Role of Perceived Autonomy Support From Providers in Relapsing-Remitting Multiple Sclerosis. Annals of Behavioral Medicine 2019;53(3):283 View
  33. Golan D, Sagiv S, Glass-Marmor L, Miller A. Mobile phone-based e-diary for assessment and enhancement of medications adherence among patients with multiple sclerosis. Multiple Sclerosis Journal - Experimental, Translational and Clinical 2020;6(3) View
  34. Swan M. Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. Journal of Medical Internet Research 2012;14(2):e46 View
  35. Ben-Zacharia A, Adamson M, Boyd A, Hardeman P, Smrtka J, Walker B, Walker T. Impact of Shared Decision Making on Disease-Modifying Drug Adherence in Multiple Sclerosis. International Journal of MS Care 2018;20(6):287 View
  36. Schroeder E, Desai J, Schmittdiel J, Paolino A, Schneider J, Goodrich G, Lawrence J, Newton K, Nichols G, O'Connor P, Fitz-Randolph M, Steiner J. An Innovative Approach to Informing Research: Gathering Perspectives on Diabetes Care Challenges From an Online Patient Community. interactive Journal of Medical Research 2015;4(2):e13 View
  37. Neter E, Wolkowitz A, Glass-Marmor L, Lavi I, Ratzabi S, Leibkovitz I, Miller A. Multiple modality approach to assess adherence to medications across time in Multiple Sclerosis. Multiple Sclerosis and Related Disorders 2020;40:101951 View
  38. Kwan Y, Oo L, Loh D, Phang J, Weng S, Blalock D, Chew E, Yap K, Tan C, Yoon S, Fong W, Østbye T, Low L, Bosworth H, Thumboo J. Development of an Item Bank to Measure Medication Adherence: Systematic Review. Journal of Medical Internet Research 2020;22(10):e19089 View
  39. Miravalle A, Katz J, Robertson D, Hayward B, Harlow D, Lebson L, Sloane J, Bass A, Fox E. CLICK-MS and MASTER-2 Phase IV Trial Design: Cladribine Tablets in Suboptimally Controlled Relapsing Multiple Sclerosis. Neurodegenerative Disease Management 2021;11(2):99 View
  40. Kwan Y, Weng S, Loh D, Phang J, Oo L, Blalock D, Chew E, Yap K, Tan C, Yoon S, Fong W, Østbye T, Low L, Bosworth H, Thumboo J. Measurement Properties of Existing Patient-Reported Outcome Measures on Medication Adherence: Systematic Review. Journal of Medical Internet Research 2020;22(10):e19179 View
  41. Neter E, Glass-Marmor L, Wolkowitz A, Lavi I, Miller A. Beliefs about medication as predictors of medication adherence in a prospective cohort study among persons with multiple sclerosis. BMC Neurology 2021;21(1) View
  42. Alshamrani F, Alnajashi H. Multiple sclerosis patients and e-health system in Saudi Arabia. International Journal of Human Rights in Healthcare 2022;15(2):118 View
  43. De Angelis M, Lavorgna L, Carotenuto A, Petruzzo M, Lanzillo R, Brescia Morra V, Moccia M. Digital Technology in Clinical Trials for Multiple Sclerosis: Systematic Review. Journal of Clinical Medicine 2021;10(11):2328 View
  44. Haase R, Voigt I, Scholz M, Schlieter H, Benedict M, Susky M, Dillenseger A, Ziemssen T. Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers. Brain Sciences 2021;11(8):1087 View
  45. Kołtuniuk A, Pytel A, Krówczyńska D, Chojdak-Łukasiewicz J. The Quality of Life and Medication Adherence in Patients with Multiple Sclerosis—Cross-Sectional Study. International Journal of Environmental Research and Public Health 2022;19(21):14549 View
  46. Al-Keilani M, Almomani B. Medication adherence to disease-modifying therapies among a cohort of Jordanian patients with relapsing-remitting multiple sclerosis: a multicentre cross-sectional study. International Journal of Pharmacy Practice 2023 View
  47. Etta G, Galeazzi A, Hutchings J, James Smith C, Conti M, Quattrociocchi W, Riva G, Jalloh M. COVID-19 infodemic on Facebook and containment measures in Italy, United Kingdom and New Zealand. PLOS ONE 2022;17(5):e0267022 View
  48. Krüger K, Fricke L, Dilger E, Thiele A, Schaubert K, Hoekstra D, Heidenreich F, Brütt A, Stahmeyer J, Stahmann A, Röper A, Kubiak K, Hemmerling M, Grau A, Eichstädt K, Behrens S, Krauth C, Shen L. How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV). PLOS ONE 2021;16(11):e0259855 View
  49. Alonso R, Rojas J, Ramos J, Correa P, Pita C, Cohen L, Vanotti S, Garcea O, Silva B. Evaluation of adherence to treatment in patients with multiple sclerosis from Latin America. Multiple Sclerosis and Related Disorders 2022;63:103915 View
  50. Neter E, Glass-Marmor L, Wolkowitz A, Miller A. Medication habits among persons with multiple sclerosis. Multiple Sclerosis and Related Disorders 2022;68:104224 View
  51. Kazemi S, Rakhshan M, Rivaz M, Izadi S. The effects of continuous care model using a smartphone application on adherence to treatment and self-efficacy among patients with multiple sclerosis. BMC Medical Informatics and Decision Making 2022;22(1) View
  52. Alonso R, Casas M, Lazaro L, Liguori N, Pita C, Cohen L, Rojas J, Pappolla A, Patrucco L, Cristiano E, Burgos M, Vrech C, Piedrabuena R, Pablo L, Deri N, Luetic G, Miguez J, Cabrera M, Martinez A, Zanga G, Tkachuk V, Tizio S, Carnero Contentti E, Knorre E, Leguizamon F, Mainella C, Nofal P, Liwacki S, Hryb J, Menichini M, Pestchanker C, Garcea O, Silva B. Evaluation of the use of high-efficacy treatments (HETs) in patients with relapsing-remitting multiple sclerosis in Argentina. Multiple Sclerosis and Related Disorders 2023;79:104935 View
  53. Almarwani M, Alosaimi B. Exercise Self-Efficacy and Fatigue as Predictors of Adherence to Home-Based Exercise Among Patients with Multiple Sclerosis. Patient Preference and Adherence 2023;Volume 17:1441 View
  54. Ben-Zacharia A, Walker B, Ross A, Tornatore C, Edwards N, Lipman Y, Phillips A. Factors Associated With Disease-Modifying Therapy Adherence and Persistence in Multiple Sclerosis: A Scoping Literature Review. International Journal of MS Care 2023;25(5):188 View
  55. Üstündağ S, Yeşilbalkan Ö, Kabay S. The effect of a mobile education application (MobilMS) developed for multiple sclerosis patients in Turkey on symptom management and quality of life: A randomized controlled study. Multiple Sclerosis and Related Disorders 2024;81:105342 View
  56. Thomason S, Moghaddam N, Evangelou N, Middleton R, das Nair R. Barriers and strategies to medication adherence amongst people with multiple sclerosis and cognitive problems. Multiple Sclerosis and Related Disorders 2024;88:105727 View
  57. Shaglaeva Y, Titova M, Pashkovskaya D, Kamenskikh E, Alifirova V. Adherence to treatment in the management of patients with multiple sclerosis. S.S. Korsakov Journal of Neurology and Psychiatry 2024;124(7):26 View