Advanced search
Publication Cover
Patient Preference and Adherence Volume 14, 2020 - Issue
Submit an article Journal homepage
110
Views
1
CrossRef citations to date
0
Altmetric
Original Research

Patient Perspective in the Development of Electronic Patient-Reported Outcomes (ePROs) in Seizure Disorders: A Patient-Centric Approach

Anzalee Khan1 Nathan S. Kline Institute for Psychiatric Research, Orangeburg, NY, USA;2 Manhattan Psychiatric Center, New York, NY, USACorrespondence[email protected]
,
Alyssa Peechatka3 eResearch Technology Inc., Boston, MA, USA
,
Nadeeka R Dias3 eResearch Technology Inc., Boston, MA, USAORCID Iconhttps://orcid.org/0000-0001-9152-4915
ORCID Icon,
Viviane Lima3 eResearch Technology Inc., Boston, MA, USA
,
Mary Seddo2 Manhattan Psychiatric Center, New York, NY, USA
,
Ayla Inja2 Manhattan Psychiatric Center, New York, NY, USA
&
Susan M Dallabrida4 Oracle, Burlington, MA, USA
 show all
Pages 13-21 | Published online: 06 Jan 2020

References

  • Food and Drug Administration. [Website] Patient-reported outcome measures: use in medicinal product development to support labeling claims. Guidance for Industry. Available from: http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM193282.pdf. Accessed August 15, 2013.
  • Schwartzberg L. Electronic patient-reported outcomes: the time is ripe for integration into patient care and clinical research. Am Soc Clin Oncol Educ Book. 2016;35:e89–e96. doi:10.14694/EDBK_158749
  • Annegers JF. The epidemiology of epilepsy. In: Wyllie E, editor. The Treatment of Epilepsy: Principles and Practice. 2nd. Baltimore:Williams & Wilkins; 1997:165–172.
  • Hauser WA, Annegers JF. Epidemiology of acute symptomatic seizures. Epilepsy. 2009;87–91.
  • Stone AA, Shiffman S, Schwartz JE, Broderick JE, Hufford MR. Patient non-compliance with paper diaries. BMJ. 2002;324:1193–1194. doi:10.1136/bmj.324.7347.1193
  • Coons SJ, Gwaltney CJ, Hays RD, et al. Recommendations on evidence needed to support measurement equivalence between electronic and paper-based patient-reported outcome (PRO) measures: ISPOR ePRO Good Research Practices Task Force Report. Value Health. 2009;12:419–429. doi:10.1111/j.1524-4733.2008.00470.x
  • Robling MR, Ingledew DK, Greene G, et al. Applying an extended theoretical framework for data collection mode to health services research. BMC Health Serv Res. 2010;10:180. doi:10.1186/1472-6963-10-180
  • Hunt SD. Modern Marketing Theory. Cincinnati: South-Western Publishing; 1991.
  • Degerliyurt K, Gunsolley JC, Laskin DM. Informed consent: what do patients really want to know? J Oral Maxillofac Surg. 2010;68(8):1849–1852. doi:10.1016/j.joms.2010.04.004
  • IBM Corp. IBM SPSS Statistics for Windows, Version 23.0. Armonk, NY: IBM Corp; 2015.
  • US Food and Drug Administration. Guidance for industry: electronic source data in clinical investigations; 2013. Available from: http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM328691.pdf. Accessed December 16, 2019.
  • Zbrozek A, Hebert J, Gogates G, et al. Validation of electronic systems to capture patient-reported outcome (PRO) data – recommendations for clinical trial teams: report of the ISPOR ePRO systems validation task force. Value Health. 2013;16:480–489. doi:10.1016/j.jval.2013.04.002
  • Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2016;34(6):557–565. doi:10.1200/JCO.2015.63.0830
  • Gwaltney CJ, Shields A, Shiffman S. Equivalence of electronic and paper-and-pencil administration of patient-reported outcome measures: a meta-analytic review. Value Health. 2008;11(2):322–333.9. doi:10.1111/j.1524-4733.2007.00231.x
  • Kušec S, Orešković S, Škegro M, Korolija D, Bušić Ž, Horžić M. Improving comprehension of informed consent. Patient Educ Couns. 2006;60(3):294–300. doi:10.1016/j.pec.2005.10.009
  • Feudtner C. What are the goals of patient education? West J Med. 2001;174:173–174. doi:10.1136/ewjm.174.3.173
  • Kaur G, Smyth RL, Williamson P. Developing a survey of barriers and facilitators to recruitment in randomized controlled trials. Trials. 2012;13:218. doi:10.1186/1745-6215-13-218
  • Stull DE, Leidy NK, Parasuraman B, Chassany O. Optimal recall periods for patient-reported outcomes: challenges and potential solutions. Curr Med Res Opin. 2009;25:929–942. doi:10.1185/03007990902774765
  • Ahmed S, Berzon RA, Revicki DA, et al. The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy. Med Care. 2012;50:1060–1070. doi:10.1097/MLR.0b013e318268aaff

Related research

People also read lists articles that other readers of this article have read.

Recommended articles lists articles that we recommend and is powered by our AI driven recommendation engine.

Cited by lists all citing articles based on Crossref citations.
Articles with the Crossref icon will open in a new tab.