Opportunities and Challenges of Web-Based and Remotely Administered Surveys for Patient Preference Studies in a Vulnerable Population

References

• Petrocchi S, Iannello P, Lecciso F, Levante A, Antonietti A, Schulz PJ. Interpersonal trust in doctor-patient relation: evidence from dyadic analysis and association with quality of dyadic communication. Soc Sci Med. 2019;235(June):112391. Elsevier. PMID: 31301438. doi:10.1016/j.socscimed.2019.112391
   Web of Science ®Google Scholar
• Pravettoni G, Gorini A. A P5 cancer medicine approach: why personalized medicine cannot ignore psychology. J Eval Clin Pract. 2011;17(4):594–596. PMID: 21679280. doi:10.1111/j.1365-2753.2011.01709.x
   Web of Science ®Google Scholar
• Gorini A, Pravettoni G. P5 medicine: a plus for a personalized approach to oncology. Nat Rev Clin Oncol. 2011;8(7):444. PMID: 21629214. doi:10.1038/nrclinonc.2010.227-c1
   Web of Science ®Google Scholar
• Smith MY, Hammad TA, Metcalf M, et al. Patient engagement at a tipping point—the need for cultural change across patient, sponsor, and regulator stakeholders: insights from the DIA conference, “patient engagement in benefit risk assessment throughout the life cycle of medical products”. Ther Innov Regul Sci. 2016;50(5):546–553. doi:10.1177/2168479016662902
   Web of Science ®Google Scholar
• van Overbeeke E, Whichello C, Janssens R, et al. Factors and situations influencing the value of patient preference studies along the medical product lifecycle: a literature review. Drug Discov Today. 2019;24(1):57–68. Elsevier Ltd. PMID: 30266656. doi:10.1016/j.drudis.2018.09.015
   PubMed Web of Science ®Google Scholar
• Bywall KS, Veldwijk J, Hansson MG, Kihlbom U. Patient perspectives on the value of patient preference information in regulatory decision making: a Qualitative Study in Swedish patients with rheumatoid arthritis. Patient. 2019;12(3):297–305. doi:10.1007/s40271-018-0344-2
   Google Scholar
• Soekhai V, de Bekker-grob EW, Ellis AR, Vass CM. Discrete choice experiments in health economics: past, present and future. Pharmacoeconomics. 2019;37(2):201–226. Springer International Publishing. PMID: 30392040
   PubMed Web of Science ®Google Scholar
• Monzani D, Petrocchi S, Oliveri S, et al. Patient preferences for lung cancer treatments: a study protocol for a preference survey using discrete choice experiment and swing weighting.Front Med (Lausanne). 2021;8:689114. doi:10.3389/fmed.2021.689114
   Web of Science ®Google Scholar
• Chambers SK, Baade P, Youl P, et al. Psychological distress and quality of life in lung cancer: the role of health-related stigma, illness appraisals and social constraints. Psychooncology. 2015;24(11):1569–1577. John Wiley & Sons, Ltd. doi:10.1002/pon.3829
   PubMed Web of Science ®Google Scholar
• Clark MD, Determann D, Petrou S, Moro D, de Bekker-grob EW. Discrete choice experiments in health economics: a review of the literature. Pharmacoeconomics. 2014;32(9):883–902. PMID: 25005924. doi:10.1007/s40273-014-0170-x
   PubMed Web of Science ®Google Scholar
• Lefever S, Dal M, Matthíasdóttir Á. Online data collection in academic research: advantages and limitations. Br J Educ Technol. 2007;38(4):574–582. doi:10.1111/j.1467-8535.2006.00638.x
   Web of Science ®Google Scholar
• Weigold A, Weigold IK, Russell EJ. Examination of the equivalence of self-report survey-based paper-and-pencil and internet data collection methods. Psychol Methods. 2013;18(1):53. American Psychological Association.
   PubMed Web of Science ®Google Scholar
• Greenlaw C, Brown-Welty S. A comparison of web-based and paper-based survey methods: testing assumptions of survey mode and response cost. Eval Rev. 2009;33(5):464–480. Sage Publications Sage Ca: Los Angeles, CA. doi:10.1177/0193841X09340214
   PubMed Web of Science ®Google Scholar
• Determann D, Lambooij MS, Steyerberg EW, de Bekker-grob EW, de Wit GA. Impact of survey administration mode on the results of a health-related discrete choice experiment: online and paper comparison. Value Health. 2017;20(7):953–960. Elsevier Inc. PMID: 28712625. doi:10.1016/j.jval.2017.02.007
   PubMed Web of Science ®Google Scholar
• Kelfve S, Kivi M, Johansson B, Lindwall M. Going web or staying paper? The use of web-surveys among older people. BMC Med Res Methodol. 2020;20(1):252. doi:10.1186/s12874-020-01138-0
   PubMed Web of Science ®Google Scholar
• Oh SS, Kim K-A, Kim M, Oh J, Chu SH, Choi J. Measurement of digital literacy among older adults: systematic review. J Med Internet Res. 2021;23(2):e26145. Publications Inc., Toronto, Canada. doi:10.2196/26145
   Web of Science ®Google Scholar
• Wright KB Web-based survey methodology; 2019.
   Google Scholar
• Sawtooth Software, Inc. [Internet]. Available from: https://sawtoothsoftware.com/. Accessed November 5, 2021.
   Google Scholar
• Bywall KS, Veldwijk J, Hansson MG, et al. Does being exposed to an educational tool influence patient preferences? The influence of an educational tool on patient preferences assessed by a discrete choice experiment. Patient Educ Couns. 2021;xxxx:1–9. Elsevier. doi:10.1016/j.pec.2021.03.013
   Web of Science ®Google Scholar
• Jaspers MWM, Steen T, Bos van den C, Geenen M. The think aloud method: a guide to user interface design. Int J Med Inform. 2004;73(11):781–795. doi:10.1016/j.ijmedinf.2004.08.003
   Web of Science ®Google Scholar
• Hohwü L, Lyshol H, Gissler M, Jonsson SH, Petzold M, Obel C. Web-based versus traditional paper questionnaires: a mixed-mode survey with a Nordic perspective. J Med Internet Res. 2013;15(8):1–11. PMID: 23978658. doi:10.2196/jmir.2595
   Web of Science ®Google Scholar
• Zuidgeest M, Hendriks M, Koopman L, Spreeuwenberg P, Rademakers J. A comparison of a postal survey and mixed-mode survey using a questionnaire on patients’ experiences with breast care. J Med Internet Res. 2011;13(3):1–13. PMID: 21946048. doi:10.2196/jmir.1241
   Web of Science ®Google Scholar
• Scott A, Jeon SH, Joyce CM, et al. A randomised trial and economic evaluation of the effect of response mode on response rate, response bias, and item non-response in a survey of doctors. BMC Med Res Methodol. 2011;11. PMID: 21888678. doi:10.1186/1471-2288-11-126
   Web of Science ®Google Scholar
• Mainetti R, Oliveri S, Cutica I, et al. Design, development and usability test of serious games related to genetics. 2018 IEEE 6th Int Conf Serious Games Appl Heal; 2018:1–8. doi:10.1109/SeGAH.2018.8401344
   Google Scholar
• Oliveri S, Mainetti R, Gorini A, et al. Serious games for improving genetic literacy and genetic risk awareness in the general public: protocol for a randomized controlled trial. JMIR Res Protoc. 2018;7(12):e189. doi:10.2196/resprot.9288
   Web of Science ®Google Scholar
• Veldwijk J, Johansson JV, Donkers B, de Bekker-grob E. Mimicking real life decision-making in health: allowing respondents time-to-think in a discrete choice experiment. Value Health. 2017;20(9):A406. Elsevier. doi:10.1016/j.jval.2017.08.049
   Web of Science ®Google Scholar
• de Wit M, Cooper C, Tugwell P, et al. Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO). Aging Clin Exp Res. 2019;31(7):905–915. doi:10.1007/s40520-019-01193-8
   Web of Science ®Google Scholar
• National Cancer Institute. Lung and bronchus cancer — cancer stat facts [Internet]; [cited April 8, 2021]. Available from: https://seer.cancer.gov/statfacts/html/lungb.html. Accessed November 5, 2021.
   Google Scholar
• Internet usage in Europe - Statistics & Facts. Statista [Internet]; [cited April 8, 2021]. Available from: https://www.statista.com/topics/3853/internet-usage-in-europe/. Accessed November 5, 2021.
   Google Scholar
• Use of Internet and Online Activities. Shaping Europe’s digital future [Internet]; [cited April 8, 2021]. Available from: https://ec.europa.eu/digital-single-market/en/use-internet-and-online-activities. Accessed November 5, 2021.
   Google Scholar
• Carbonaro M, Bainbridge J. Design and development of a process for web-based survey research. Alberta J Educ Res. 2000;46(4). doi:10.11575/ajer.v46i4.54834
   Web of Science ®Google Scholar
• Saloniki E-C, Malley J, Burge P, et al. Comparing internet and face-to-face surveys as methods for eliciting preferences for social care-related quality of life: evidence from England using the ASCOT service user measure. Qual Life Res. 2019;28(8):2207–2220. doi:10.1007/s11136-019-02172-2
   Web of Science ®Google Scholar
• Waycott J, Wadley G, Schutt S, Stabolidis A, Lederman R. The challenge of technology research in sensitive settings. Proc Annu Meet Aust Spec Interes Gr Comput Hum Interact - OzCHI ’15 [Internet]; 2015:240–249. Available from: http://dl.acm.org/citation.cfm?id=2838739.2838773. Accessed November 5, 2021.
   Google Scholar
• Buchanan EA, Hvizdak EE. Online survey tools: ethical and methodological concerns of human research ethics committees. J Empir Res Hum Res Ethics. 2009;4(2):37–48. SAGE Publications Inc. doi:10.1525/jer.2009.4.2.37
   PubMed Web of Science ®Google Scholar
• Bianchi A, Biffignandi S, Lynn P. Web-face-to-face mixed-mode design in a longitudinal survey: effects on participation rates, sample composition, and costs. J Off Stat. 2017;33(2):385–408. doi:10.1515/jos-2017-0019
   Web of Science ®Google Scholar