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Perspectives

Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies

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Pages 1331-1345 | Published online: 18 Jun 2021

References

  • FDA. Patient preference information – voluntary submission, review in premarket approval applications, humanitarian device exemption applications, and de novo requests, and inclusion in decision summaries and device labeling: guidance for industry, food and drug administration staff, and other stakeholders. U.S. Department of Health and Human Services Food and Drug Administration, Center for Devices and Radiological Health and Center for Biologics Evaluation and Research, ed. Available from: http://www.fda.gov/downloads/medicaldevices/deviceregulationandguidance/guidancedocuments/ucm446680.pdf2016. Accessed May 25, 2021.
  • EMA. The Patient’s Voice in the Evaluation of Medicines. European Medicines Agency, Stakeholders and Communication Division; 2013. Available from: https://www.ema.europa.eu/en/documents/report/report-workshop-patients-voice-evaluation-medicines_en.pdf. Accessed April 14, 2021
  • US Department of Health and Human Services Food and Drug Administration, Center for Devices and Radiological Health and Center for Biologics Evaluation and Research. Patient preference information—voluntary submission, review in premarket approval applications, humanitarian device exemption applications, and de novo requests, and inclusion in decision summaries and device labeling: guidance for industry, food and drug administration staff, and other stakeholders. Available from: https://www.fda.gov/media/92593/download. Accessed May 25, 2021.
  • Elwyn G, Frosch D, Rollnick S. Dual equipoise shared decision making: definitions for decision and behaviour support interventions. Implement Sci. 2009;4(1):1–8. doi:10.1186/1748-5908-4-75
  • Cutica I, Mc Vie G, Pravettoni G. Personalised medicine: the cognitive side of patients. Eur J Intern Med. 2014;25(8):685–688. doi:10.1016/j.ejim.2014.07.002
  • Kondylakis H, Kazantzaki E, Koumakis L, et al. Development of interactive empowerment services in support of personalised medicine. Ecancermedicalscience. 2014;8:8. doi:10.3332/ecancer.2014.400
  • Renzi C, Riva S, Masiero M, Pravettoni G. The choice dilemma in chronic hematological conditions: why choosing is not only a medical issue? A psycho-cognitive perspective. Crit Rev Oncol Hematol. 2016;99:134–140. doi:10.1016/j.critrevonc.2015.12.010
  • de Bekker-grob EW, Berlin C, Levitan B, et al. Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project. Springer; 2017.
  • Huls SP, Whichello CL, van Exel J, Uyl-de Groot CA, de Bekker-grob EW. What is next for patient preferences in health technology assessment? A systematic review of the challenges. Value Health. 2019;22(11):1318–1328. doi:10.1016/j.jval.2019.04.1930
  • (MDIC) MDIC. Patient centered risk-benefit project report. Available from: https://mdic-spi.org/tag/project-report/.
  • Whichello C, Van Overbeeke E, Janssens R, et al. Factors and situations affecting the value of patient preference studies: semi-structured interviews in Europe and the US. Front Pharmacol. 2019;10:1009. doi:10.3389/fphar.2019.01009
  • Janssens R, Russo S, van Overbeeke E, et al. Patient preferences in the medical product life cycle: what do stakeholders think? Semi-structured qualitative interviews in Europe and the USA. Patient. 2019;12(1):1–14. doi:10.1007/s40271-018-0324-6
  • Russo S, Jongerius C, Faccio F, et al. Understanding patients’ preferences: a systematic review of psychological instruments used in patients’ preference and decision studies. Value Health. 2019;22(4):491–501. doi:10.1016/j.jval.2018.12.007
  • Lazarus RS. Progress on a cognitive-motivational-relational theory of emotion. Am Psychol. 1991;46(8):819. doi:10.1037/0003-066X.46.8.819
  • Spielberger CD, Gorsuch RL, Lushene RE. Manual for the state-trait anxiety inventory 1970; 2018. Available from: https://ubir.buffalo.edu/xmlui/handle/10477/2895. Accessed September 8, 2018.
  • Lazarus RS. Emotion and Adaptation. Oxford University Press on Demand; 1991.
  • Rakos RF. Assertive Behavior: Theory, Research, and Training. Taylor & Frances/Routledge; 1991.
  • Deci EL, Ryan RM. The support of autonomy and the control of behavior. J Pers Soc Psychol. 1987;53(6):1024. doi:10.1037/0022-3514.53.6.1024
  • Kasser VG, Ryan RM. The relation of psychological needs for autonomy and relatedness to vitality, well‐being, and mortality in a nursing home 1. J Appl Soc Psychol. 1999;29(5):935–954. doi:10.1111/j.1559-1816.1999.tb00133.x
  • Gray J, McNaughton N. The Neuropsychology of Anxiety. Oxford University Press; 1982.
  • Suziedelis A, Lorr M. Conservative attitudes and authoritarian values. J Psychol. 1973;83(2):287–294. doi:10.1080/00223980.1973.9915616
  • Degner LF, Sloan JA, Venkatesh P. The control preferences scale. Can J Nurs Res. 1997;29(3).
  • Compas BE. Coping with stress during childhood and adolescence. Psychol Bull. 1987;101(3):393. doi:10.1037/0033-2909.101.3.393
  • Driver MJ. Individual decision making and creativity. Organ Behav. 1979;59–91.
  • Harren VA. A model of career decision making for college students. J Vocat Behav. 1979;14(2):119–133. doi:10.1016/0001-8791(79)90065-4
  • American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Publishing; 2013.
  • Scheier MF, Carver CS. Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychol. 1985;4(3):219. doi:10.1037/0278-6133.4.3.219
  • Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. Development of a brief test to measure functional health literacy. Patient Educ Couns. 1999;38(1):33–42. doi:10.1016/S0738-3991(98)00116-5
  • Wallston KA, Strudler wallston B, DeVellis R. Development of the multidimensional health locus of control (MHLC) scales. Health Educ Monogr. 1978;6(1):160–170. doi:10.1177/109019817800600107
  • Reyna VF, Nelson WL, Han PK, Dieckmann NF. How numeracy influences risk comprehension and medical decision making. Psychol Bull. 2009;135(6):943. doi:10.1037/a0017327
  • Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A. Validation of the subjective numeracy scale: effects of low numeracy on comprehension of risk communications and utility elicitations. Med Decis Mak. 2007;27(5):663–671. doi:10.1177/0272989X07303824
  • Dutta M, Bodie G, Basu A. Health disparity and the racial divide among the nation’s youth: internet as a site for change? In: John D, Catherine T, editors. MacArthur Foundation Series on Digital Media and Learning. Cambridge, MA: The MIT Pr; 2008:175–198.
  • Baker K, Jaksic S, Rowley D. The self-regulation model of illness representation applied to stuttering. J Psychosom Res. 1995;60:631–637.
  • Morgan GA, Harmon RJ, Maslin-Cole CA. Mastery motivation: definition and measurement. Early Educ Dev. 1990;1(5):318–339. doi:10.1207/s15566935eed0105_1
  • Kleinstäuber M. Mood. In: Encyclopedia of Behavioral Medicine. New York: Springer; 2013:1259–1261.
  • Kruglanski AW, Webster DM. Motivated closing of the mind: ‘seizing’ and ‘freezing’. Psychol Rev. 1996;103(2):263–283. doi:10.1037/0033-295X.103.2.263
  • Cacioppo JT, Petty RE, Feinstein JA, Jarvis WBG. Dispositional differences in cognitive motivation: the life and times of individuals varying in need for cognition. Psychol Bull. 1996;119(2):197. doi:10.1037/0033-2909.119.2.197
  • Cacioppo JT, Petty RE, Feng Kao C. The efficient assessment of need for cognition. J Pers Assess. 1984;48(3):306–307. doi:10.1207/s15327752jpa4803_13
  • Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005;40(6p1):1918–1930. doi:10.1111/j.1475-6773.2005.00438.x
  • Allport GW. Pattern and Growth in Personality. New York: Holt, Rinehart & Winston; 1961.
  • Ryff CD, Singer BH. Best news yet on the six-factor model of well-being. Soc Sci Res. 2006;35(4):1103–1119. doi:10.1016/j.ssresearch.2006.01.002
  • Pacini R, Epstein S. The relation of rational and experiential information processing styles to personality, basic beliefs, and the ratio-bias phenomenon. J Pers Soc Psychol. 1999;76(6):972. doi:10.1037/0022-3514.76.6.972
  • American Psychological Association. The road to resilience 2014; 2017. Available from: http://www.apa.org/helpcenter/road-resilience.aspx. Accessed May 25, 2021.
  • Mellers BA, Cooke AD. The role of task and context in preference measurement. Psychol Sci. 1996;7(2):76–82. doi:10.1111/j.1467-9280.1996.tb00333.x
  • Bandura A. Self-efficacy. In: Ramachandran VS, editor. Encyclopedia of Human Behavior. Vol. 4. San Diego: Academic Press; 1994:71–81.
  • Zuckerman M. Behavioral Expressions and Biosocial Bases of Sensation Seeking. Cambridge university press; 1994.
  • Antonovsky A, Sourani T. Family sense of coherence and family adaptation. J Marriage Fam. 1988;50(1):79–92. doi:10.2307/352429
  • Cohen S. Social relationships and health. Am Psychol. 2004;59(8):676. doi:10.1037/0003-066X.59.8.676
  • Horne R, Weinman J. Patients’ beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. J Psychosom Res. 1999;47(6):555–567. doi:10.1016/S0022-3999(99)00057-4
  • Keeney S, McKenna H, Hasson F. The Delphi Technique in Nursing and Health Research. John Wiley & Sons; 2011.
  • Vernon W. The delphi technique: a review. Int J Ther Rehabil. 2009;16(2):69–76. doi:10.12968/ijtr.2009.16.2.38892
  • Kezar A, Maxey D. The delphi technique: an untapped approach of participatory research. Int J Soc Res Methodol. 2016;19(2):143–160.
  • Carmines EG, Woods J. Validity. In: Lewis-Beck M, Liao TF, editors. The Sage Encyclopedia of Social Science Research Methods. 2003.
  • Gushta MM, Rupp AA. Reliability. In: Salkind NJ, editor. Encyclopedia of Research Design. 2010.
  • Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000;25(24):3186–3191. doi:10.1097/00007632-200012150-00014
  • Hays RD, Weech-Maldonado R, Teresi JA, Wallace SP, Stewart AL. Commentary: copyright restrictions versus open access to survey instruments. Med Care. 2018;56(2):107–110. doi:10.1097/MLR.0000000000000857
  • Lingler JH, Schmidt K, Gentry A, Hu L, Terhorst L. Perceived Research Burden Assessment (PeRBA): instrument development and psychometric evaluation. J Empir Res Hum Res Ethics. 2014;9(4):46. doi:10.1177/1556264614545037
  • Sharp LM, Frankel J. Respondent burden: a test of some common assumptions. Public Opin Q. 1983;47(1):36–53. doi:10.1086/268765
  • Ulrich CM, Wallen GR, Feister A, Grady C. Respondent burden in clinical research: when are we asking too much of subjects? Ethics Hum Res. 2005;27(4):17–20. doi:10.2307/3563957
  • CDRH F. Patient Preference information–voluntary submission, review in premarket approval applications, humanitarian device exemption applications, and de novo requests, and inclusion in decision summaries and device labeling. Food and Drug Administration Staff, and Other Stakeholders. 2016.