Clinical trial NCT04236544 - References

Multiple Sclerosis — Patient Experiences of Multiple Sclerosis (PExMS)

Citation(s)

•   Bekker HL, Winterbottom AE, Butow P, Dillard AJ, Feldman-Stewart D, Fowler FJ, Jibaja-Weiss ML, Shaffer VA, Volk RJ
  Do personal stories make patient decision aids more effective? A critical review of theory and evidence. BMC Med Inform Decis Mak. 2013;13 Suppl 2(Suppl 2):S9. doi: 10.1186/1472-6947-13-S2-S9. Epub 2013 Nov 29.
•   Bennett C, Graham ID, Kristjansson E, Kearing SA, Clay KF, O'Connor AM
  Validation of a preparation for decision making scale. Patient Educ Couns. 2010 Jan;78(1):130-3. doi: 10.1016/j.pec.2009.05.012. Epub 2009 Jun 26.
•   Browne P, Chandraratna D, Angood C, Tremlett H, Baker C, Taylor BV, Thompson AJ
  Atlas of Multiple Sclerosis 2013: A growing global problem with widespread inequity. Neurology. 2014 Sep 9;83(11):1022-4. doi: 10.1212/WNL.0000000000000768. No abstract available.
•   De Las Cuevas C, Penate W
  Validity of the Control Preferences Scale in patients with emotional disorders. Patient Prefer Adherence. 2016 Nov 15;10:2351-2356. doi: 10.2147/PPA.S122377. eCollection 2016.
•   Degner LF, Sloan JA, Venkatesh P
  The Control Preferences Scale. Can J Nurs Res. 1997 Fall;29(3):21-43.
•   Dillard AJ, Fagerlin A, Dal Cin S, Zikmund-Fisher BJ, Ubel PA
  Narratives that address affective forecasting errors reduce perceived barriers to colorectal cancer screening. Soc Sci Med. 2010 Jul;71(1):45-52. doi: 10.1016/j.socscimed.2010.02.038. Epub 2010 Mar 21.
•   Engler J, Adami S, Adam Y, Keller B, Repke T, Fugemann H, Lucius-Hoene G, Muller-Nordhorn J, Holmberg C
  Using others' experiences. Cancer patients' expectations and navigation of a website providing narratives on prostate, breast and colorectal cancer. Patient Educ Couns. 2016 Aug;99(8):1325-32. doi: 10.1016/j.pec.2016.03.015. Epub 2016 Mar 17.
•   Entwistle VA, France EF, Wyke S, Jepson R, Hunt K, Ziebland S, Thompson A
  How information about other people's personal experiences can help with healthcare decision-making: a qualitative study. Patient Educ Couns. 2011 Dec;85(3):e291-8. doi: 10.1016/j.pec.2011.05.014. Epub 2011 Jun 8.
•   Giesler JM, Keller B, Repke T, Leonhart R, Weis J, Muckelbauer R, Rieckmann N, Muller-Nordhorn J, Lucius-Hoene G, Holmberg C
  Effect of a Website That Presents Patients' Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial. J Med Internet Res. 2017 Oct 13;19(10):e334. doi: 10.2196/jmir.7639.
•   Graham ID OCA
  User Manual - Preparation for Decision Making Scale. In: Institute OHR, editor. Ottawa1995.
•   Heesen C, Kasper J, Fischer K, Kopke S, Rahn A, Backhus I, Poettgen J, Vahter L, Drulovic J, Van Nunen A, Beckmann Y, Liethmann K, Giordano A, Fulcher G, Solari A; AutoMS-group
  Risk Knowledge in Relapsing Multiple Sclerosis (RIKNO 1.0)--Development of an Outcome Instrument for Educational Interventions. PLoS One. 2015 Oct 2;10(10):e0138364. doi: 10.1371/journal.pone.0138364. eCollection 2015.
•   Heesen C, Kasper J, Segal J, Kopke S, Muhlhauser I
  Decisional role preferences, risk knowledge and information interests in patients with multiple sclerosis. Mult Scler. 2004 Dec;10(6):643-50. doi: 10.1191/1352458504ms1112oa.
•   Heesen C, Kolbeck J, Gold SM, Schulz H, Schulz KH
  Delivering the diagnosis of MS--results of a survey among patients and neurologists. Acta Neurol Scand. 2003 May;107(5):363-8. doi: 10.1034/j.1600-0404.2003.00086.x.
•   Heesen C, Pottgen J, Rahn AC, Liethmann K, Kasper J, Vahter L, Drulovic J, Van Nunen A, Wilkie D, Beckmann Y, Paul F, Kopke S, Giordano A, Solari A; AutoMS-group
  What should a person with relapsing-remitting multiple sclerosis know? - Focus group and survey data of a risk knowledge questionnaire (RIKNO 2.0). Mult Scler Relat Disord. 2017 Nov;18:186-195. doi: 10.1016/j.msard.2017.09.020. Epub 2017 Sep 21.
•   Heesen C, Schaffler N, Kasper J, Muhlhauser I, Kopke S
  Suspected multiple sclerosis - what to do? Evaluation of a patient information leaflet. Mult Scler. 2009 Sep;15(9):1103-12. doi: 10.1177/1352458509106508. Epub 2009 Jul 22.
•   Hibbard JH, Stockard J, Mahoney ER, Tusler M
  Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004 Aug;39(4 Pt 1):1005-26. doi: 10.1111/j.1475-6773.2004.00269.x.
•   Kelly L, Jenkinson C, Ziebland S
  Measuring the effects of online health information for patients: item generation for an e-health impact questionnaire. Patient Educ Couns. 2013 Dec;93(3):433-8. doi: 10.1016/j.pec.2013.03.012. Epub 2013 Apr 15.
•   Kelly L, Ziebland S, Jenkinson C
  Measuring the effects of online health information: Scale validation for the e-Health Impact Questionnaire. Patient Educ Couns. 2015 Nov;98(11):1418-24. doi: 10.1016/j.pec.2015.06.008. Epub 2015 Jun 22.
•   Kopke S, Kasper J, Flachenecker P, Meissner H, Brandt A, Hauptmann B, Bender G, Backhus I, Rahn AC, Pottgen J, Vettorazzi E, Heesen C
  Patient education programme on immunotherapy in multiple sclerosis (PEPIMS): a controlled rater-blinded study. Clin Rehabil. 2017 Feb;31(2):250-261. doi: 10.1177/0269215516639734. Epub 2016 Jul 10.
•   Learmonth YC, Motl RW, Sandroff BM, Pula JH, Cadavid D
  Validation of patient determined disease steps (PDDS) scale scores in persons with multiple sclerosis. BMC Neurol. 2013 Apr 25;13:37. doi: 10.1186/1471-2377-13-37.
•   Legare F, Kearing S, Clay K, Gagnon S, D'Amours D, Rousseau M, O'Connor A
  Are you SURE?: Assessing patient decisional conflict with a 4-item screening test. Can Fam Physician. 2010 Aug;56(8):e308-14.
•   Marteau TM, Dormandy E, Michie S
  A measure of informed choice. Health Expect. 2001 Jun;4(2):99-108. doi: 10.1046/j.1369-6513.2001.00140.x.
•   Newhouse N, Martin A, Jawad S, Yu LM, Davoudianfar M, Locock L, Ziebland S, Powell J
  Randomised feasibility study of a novel experience-based internet intervention to support self-management in chronic asthma. BMJ Open. 2016 Dec 28;6(12):e013401. doi: 10.1136/bmjopen-2016-013401.
•   Powell J, Newhouse N, Martin A, Jawad S, Yu LM, Davoudianfar M, Locock L, Ziebland S
  A novel experience-based internet intervention for smoking cessation: feasibility randomised controlled trial. BMC Public Health. 2016 Nov 11;16(1):1156. doi: 10.1186/s12889-016-3821-3.
•   Rahn AC, Kopke S, Backhus I, Kasper J, Anger K, Untiedt B, Alegiani A, Kleiter I, Muhlhauser 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. Int J Nurs Stud. 2018 Feb;78:26-36. doi: 10.1016/j.ijnurstu.2017.08.011. Epub 2017 Aug 26.
•   Rahn AC, Kopke S, Kasper J, Vettorazzi E, Muhlhauser I, Heesen C
  Evaluator-blinded trial evaluating nurse-led immunotherapy DEcision Coaching In persons with relapsing-remitting Multiple Sclerosis (DECIMS) and accompanying process evaluation: study protocol for a cluster randomised controlled trial. Trials. 2015 Mar 21;16:106. doi: 10.1186/s13063-015-0611-7.
•   Shaffer VA, Zikmund-Fisher BJ
  All stories are not alike: a purpose-, content-, and valence-based taxonomy of patient narratives in decision aids. Med Decis Making. 2013 Jan;33(1):4-13. doi: 10.1177/0272989X12463266. Epub 2012 Oct 11.
•   Whitehead AL, Julious SA, Cooper CL, Campbell MJ
  Estimating the sample size for a pilot randomised trial to minimise the overall trial sample size for the external pilot and main trial for a continuous outcome variable. Stat Methods Med Res. 2016 Jun;25(3):1057-73. doi: 10.1177/0962280215588241. Epub 2015 Jun 19.
•   WHO
  Atlas multiple sclerosis resources in the world 2008. Geneva; London: World Health Organization; Multiple Sclerosis International Federation; 2008. 51 p.
•   Winterbottom A, Bekker HL, Conner M, Mooney A
  Does narrative information bias individual's decision making? A systematic review. Soc Sci Med. 2008 Dec;67(12):2079-88. doi: 10.1016/j.socscimed.2008.09.037. Epub 2008 Oct 24.
•   Ziebland S, Powell J, Briggs P, Jenkinson C, Wyke S, Sillence E, Harris P, Perera R, Mazanderani F, Martin A, Locock L, Kelly L, Booth M, Gann B, Newhouse N, Farmer A
  Examining the role of patients' experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health. Southampton (UK): NIHR Journals Library; 2016 Nov. Available from http://www.ncbi.nlm.nih.gov/books/NBK401199/
•   Zigmond AS, Snaith RP
  The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983 Jun;67(6):361-70. doi: 10.1111/j.1600-0447.1983.tb09716.x.

Impact of a Multimedia Website With Patient Experiences of Multiple Sclerosis (PExMS) on Immunotherapy Decision-making: a Pilot Randomised Controlled Trial in a Mixed-methods Design

Details for clinical trial NCT04236544