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BMC Medical Informatics and Decision Making

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Open Access 01-12-2023 | Research article

Getting specific: participation preference in urooncological decision-making

Authors: Björn Büdenbender, Anja K. Köther, Maximilian C. Kriegmair, Britta Grüne, Maurice S. Michel, Georg W. Alpers

Published in: BMC Medical Informatics and Decision Making | Issue 1/2023

Abstract

Background

Shared decision-making is the gold standard for good clinical practice, and thus, psychometric instruments have been established to assess patients’ generic preference for participation (e.g., the Autonomy Preference Index, API). However, patients’ preferences may vary depending on the specific disease and with respect to the specific decision context. With a modified preference index (API-Uro), we assessed patients’ specific participation preference in preference-sensitive decisions pertaining to urological cancer treatments and compared this with their generic participation preference.

Methods

In Study 1, we recruited (N = 469) urological outpatients (43.1% urooncological) at a large university hospital. Participation preference was assessed with generic measures (API and API case vignettes) and with the disease-specific API-Uro (urooncological case vignettes describing medical decisions of variable difficulty). A polychoric exploratory factor analysis was used to establish factorial validity and reduce items.

In Study 2, we collected data from N = 204 bladder cancer patients in a multicenter study to validate the factorial structure with confirmatory factor analysis.

Differences between the participation preference for different decision contexts were analyzed.

Results

Study 1: Scores on the specific urooncological case vignettes (API-Uro) correlated with the generic measure (r = .44) but also provided incremental information. Among the disease-specific vignettes of the API-Uro, there were two factors with good internal consistency (α ≥ .8): treatment versus diagnostic decisions. Patients desired more participation for treatment decisions (77.8%) than for diagnostic decisions (22%), χ²(1) = 245.1, p ≤ .001.

Study 2: Replicated the correlation of the API-Uro with the API (r = .39) and its factorial structure (SRMR = .08; CFI = .974). Bladder cancer patients also desired more participation for treatment decisions (57.4%) than for diagnostic decisions (13.3%), χ²(1) =84, p ≤ .001.

Conclusions

The desire to participate varies between treatment versus diagnostic decisions among urological patients. This underscores the importance of assessing participation preference for specific contexts. Overall, the new API-Uro has good psychometric properties and is well suited to assess patients’ preferences. In routine care, measures of participation preference for specific decision contexts may provide incremental, allowing clinicians to better address their patients’ individual needs.

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Barry MJ, Edgman-Levitan S. Shared decision making-the pinnacle of patient-centered care nothing about me without me. N Engl J Med. 2012;366:780–1. https://doi.org/10.1056/NEJMp1109283.CrossRefPubMed

Härter M, Moumjid N, Cornuz J, Elwyn G, van der Weijden T. Shared decision making in 2017: International accomplishments in policy, research and implementation. Z Evid Fortbild Qual Gesundhwes. 2017;123–124:1–5. https://doi.org/10.1016/j.zefq.2017.05.024.CrossRefPubMed

Joseph-Williams N, Lloyd A, Edwards A, Stobbart L, Tomson D, Macphail S, et al. Implementing shared decision making in the NHS: lessons from the MAGIC programme. BMJ. 2017;357:j1744. https://doi.org/10.1136/bmj.j1744.CrossRefPubMedPubMedCentral

Beauchamp TL, Childress JF. Principles of biomedical ethics. USA: Oxford University Press; 2001. https://doi.org/10.1016/S0035-9203(02)90265-8.CrossRef

Joosten EAG, DeFuentes-Merillas L, de Weert GH, Sensky T, van der Staak CPF, de Jong CAJ. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychother Psychosom. 2008;77:219–26. https://doi.org/10.1159/000126073.CrossRefPubMed

Shay LA, Lafata JE. Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Mak. 2015;35:114–31. https://doi.org/10.1177/0272989X14551638.CrossRef

Vogel BA, Helmes AW, Hasenburg A. Concordance between patients’ desired and actual decision-making roles in breast cancer care. Psychooncology. 2008;17:182–9. https://doi.org/10.1002/pon.CrossRefPubMed

Nakayama K, Osaka W, Matsubara N, Takeuchi T, Toyoda M, Ohtake N, et al. Shared decision making, physicians’ explanations, and treatment satisfaction: a cross-sectional survey of prostate cancer patients. BMC Med Inform Decis Mak. 2020;20:334. https://doi.org/10.1186/s12911-020-01355-z.CrossRefPubMedPubMedCentral

Kehl KL, Landrum MB, Arora NK, Ganz PA, van Ryn M, Mack JW, et al. Association of actual and preferred decision roles with patient-reported quality of care. JAMA Oncol. 2015;1:50. https://doi.org/10.1001/jamaoncol.2014.112.CrossRefPubMedPubMedCentral

10.

Luo H, Liu G, Lu J, Xue D. Association of shared decision making with inpatient satisfaction: a cross-sectional study. BMC Med Inform Decis Mak. 2021;21:25. https://doi.org/10.1186/s12911-021-01385-1.CrossRefPubMedPubMedCentral

11.

Wennberg JE. Unwarranted variations in healthcare delivery: Implications for academic medical centres. BMJ. 2002;325:961–4. https://doi.org/10.1136/bmj.325.7370.961.CrossRefPubMedPubMedCentral

12.

Sepucha KR, Fowler Jr FJ, Mulley Jr AG. Policy support for patient-centered care: The need for measurable improvements in decision quality. Health Aff. 2004;23 SUPPL.2. https://doi.org/10.1377/hlthaff.var.54.

13.

Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise: The competences of involving patients in healthcare choices. Br J Gen Pract. 2000;50:892–7.PubMedPubMedCentral

14.

Charles C, Amiram G, Whelan T. Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Soc Sci Med. 1997;44:681–92. https://doi.org/10.1016/S0277-9536(96)00221-3.CrossRefPubMed

15.

Elwyn G, Frosch DL, Rollnick S. Dual equipoise shared decision making: Definitions for decision and behaviour support interventions. Implement Sci. 2009;4. https://doi.org/10.1186/1748-5908-4-75.

16.

Orom H, Biddle C, Underwood W, Nelson CJ, Homish DL. What is a “good” treatment decision? Decisional control, knowledge, treatment decision making, and quality of life in men with clinically localized prostate cancer. Med Decis Mak. 2016;36:714–25. https://doi.org/10.1177/0272989X16635633.CrossRef

17.

Nuijens ST, Cobussen-Boekhorst H, Heesakkers JPFA, Witjes JA. Patient-reported outcomes and health-related quality of life after urinary diversions. Curr Opin Urol. 2021;31:574–9. https://doi.org/10.1097/MOU.0000000000000906.CrossRefPubMed

18.

Lee RK, Abol-Enein H, Artibani W, Bochner B, Dalbagni G, Daneshmand S, et al. Urinary diversion after radical cystectomy for bladder cancer: Options, patient selection and outcomes. BJU Int. 2014;113:11–23. https://doi.org/10.2217/fneb2013.13.18.CrossRefPubMed

19.

Evans B, Montie JE, Gilbert SM. Incontinent or continent urinary diversion: how to make the right choice. Curr Opin Urol. 2010;20:421–5. https://doi.org/10.1097/MOU.0b013e32833c9661.CrossRefPubMed

20.

Tikkinen KAO, Dahm P, Lytvyn L, Heen AF, Vernooij RWM, Siemieniuk RAC, et al. Prostate cancer screening with prostate-specific antigen (PSA) test: A clinical practice guideline. BMJ. 2018;362:k3581. https://doi.org/10.1136/bmj.k3581.CrossRefPubMedPubMedCentral

21.

Sanda MG, Cadeddu JA, Kirkby E, Chen RC, Crispino T, Fontanarosa J, et al. Clinically localized prostate cancer: AUA/ASTRO/SUO guideline. Part I: Risk stratification, shared decision making, and care options. J Urol. 2018;199:683–90. https://doi.org/10.1016/j.juro.2017.11.095.CrossRefPubMed

22.

Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making: A national study of public preferences. J Gen Intern Med. 2005;20:531–5. https://doi.org/10.1111/j.1525-1497.2005.04101.x.CrossRefPubMedPubMedCentral

23.

Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients’ desire for autonomy: Decision making and information-seeking preferences among medical patients. J Gen Intern Med. 1989;4:23–30. https://doi.org/10.1007/BF02596485.CrossRefPubMed

24.

Shinkunas LA, Klipowicz CJ, Carlisle EM. Shared decision making in surgery: a scoping review of patient and surgeon preferences. BMC Med Inform Decis Mak. 2020;20:190. https://doi.org/10.1186/s12911-020-01211-0.CrossRefPubMedPubMedCentral

25.

Durif-Bruckert C, Roux P, Morelle M, Mignotte H, Faure C, Moumjid-Ferdjaoui N. Shared decision-making in medical encounters regarding breast cancer treatment: The contribution of methodological triangulation. Eur J Cancer Care (Engl). 2015;24:461–72. https://doi.org/10.1111/ecc.12214.CrossRefPubMed

26.

Köther AK, Siebenhaar KU, Alpers GW. Shared decision making during the COVID-19 pandemic. Med Decis Mak. 2021;41:430–8. https://doi.org/10.1177/0272989X211004147.CrossRef

27.

Benbassat J, Pilpel D, Tidhar M. Patients’ preferences for participation in clinical decision making: A review of published surveys. Behav Med. 1998;24:81–8. https://doi.org/10.1080/08964289809596384.CrossRefPubMed

28.

Hamann J, Bieber C, Elwyn G, Wartner E, Horlein E, Kissling W, et al. How do patients from eastern and western Germany compare with regard to their preferences for shared decision making? Eur J Public Health. 2012;22:469–73. https://doi.org/10.1093/eurpub/ckr112.CrossRefPubMed

29.

Hubbard G, Kidd L, Donaghy E. Preferences for involvement in treatment decision making of patients with cancer: A review of the literature. Eur J Oncol Nurs. 2008;12:299–318. https://doi.org/10.1016/j.ejon.2008.03.004.CrossRefPubMed

30.

Chewning B, Bylund C, Shah B, Neeraj K, Gueguen JA, Makoul G. Patient preferences for shared decisions: A systematic review. Patient Educ Couns. 2012;86:9–18. https://doi.org/10.1016/j.pec.2011.02.004.CrossRefPubMed

31.

Say RE, Murtagh M, Thomson R. Patients’ preference for involvement in medical decision making: A narrative review. Patient Educ Couns. 2006;60:102–14. https://doi.org/10.1016/j.pec.2005.02.003.CrossRefPubMed

32.

Noteboom EA, May AM, Wall E, Wit NJ, Helsper CW. Patients’ preferred and perceived level of involvement in decision making for cancer treatment: A systematic review. Psychooncology. 2021 https://doi.org/10.1002/pon.5750.

33.

Brom L, Hopmans W, Pasman HRW, Timmermans DR, Widdershoven GA, Onwuteaka-Philipsen BD. Congruence between patients’ preferred and perceived participation in medical decision-making: A review of the literature. BMC Med Inform Decis Mak. 2014;14. https://doi.org/10.1186/1472-6947-14-25.

34.

Tariman JD, Berry DL, Cochrane B, Doorenbos A, Schepp K. Preferred and actual participation roles during health care decision making in persons with cancer: A systematic review. Ann Oncol. 2010;21:1145–51. https://doi.org/10.1093/annonc/mdp534.CrossRefPubMed

35.

Davison BJ, Degner LF, Morgan TR. Information and decision-making preferences of men with prostate cancer. Oncol Nurs Forum. 1995;22:1401–8.PubMed

36.

Davison BJ, Gleave ME, Goldenberg SL, Degner LF, Hoffart D, Berkowitz J. Assessing information and decision preferences of men with prostate cancer and their partners. Cancer Nurs. 2002;25:42–9. https://doi.org/10.1097/00002820-200202000-00009.CrossRefPubMed

37.

O’Dell KJ, Volk RJ, Cass AR, Spann SJ. Screening for prostate cancer with the prostate-specific antigen test: Are patients making informed decisions? J Fam Pract. 1999;48:682–8.PubMed

38.

Woolf SH, Krist AH, Johnson RE, Stenborg PS. Unwanted control: How patients in the primary care setting decide about screening for prostate cancer. Patient Educ Couns. 2005;56:116–24. https://doi.org/10.1016/j.pec.2003.12.002.CrossRefPubMed

39.

Jerofke-Owen T, Garnier-Villarreal M, Fial A, Tobiano G. Systematic review of psychometric properties of instruments measuring patient preferences for engagement in health care. J Adv Nurs. 2020;76(8):1988–2004. https://doi.org/10.1111/jan.14402.CrossRefPubMed

40.

De las Cuevas C, Peñate W. Preferences for participation in shared decision making of psychiatric outpatients with affective disorders. Open J Psychiatry. 2014;04:16–23. https://doi.org/10.4236/ojpsych.2014.41004.CrossRef

41.

Mühlbacher AC, Juhnke C. Patient preferences versus physicians’ judgement: Does it make a difference in healthcare decision making? Appl Health Econ Health Policy. 2013;11:163–80. https://doi.org/10.1007/s40258-013-0023-3.CrossRefPubMed

42.

Elkin EB, Kim SHM, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: Elderly cancer patients’ preferences and their physicians’ perceptions. J Clin Oncol. 2007;25:5275–80. https://doi.org/10.1200/JCO.2007.11.1922.CrossRefPubMed

43.

Schaede U, Mahlich J, Nakayama M, Kobayashi H, Takahashi Y, Saito K, et al. Shared decision-making in patients with prostate cancer in japan: Patient preferences versus physician perceptions. J Glob Oncol. 2018;2018:1–9. https://doi.org/10.1200/JGO.2016.008045.CrossRef

44.

Keating NL, Guadagnoli E, Landrum MB, Borbas C, Weeks JC. Treatment decision making in early-stage breast cancer: Should surgeons match patients’ desired level of involvement? J Clin Oncol. 2002;20:1473–9. https://doi.org/10.1200/JCO.20.6.1473.CrossRefPubMed

45.

Simon D, Kriston L, Härter M. Die deutsche modifizierte fassung des Autonomie-Präferenz-Index (API-dm) [The German modified version of the Autonomy Preference Index (API-dm)]. Klin Diagnostik und Eval. 2011;4:5–14.

46.

Büdenbender B, Kriegmair MC, Köther AK, Grüne B, Michel MS, Alpers GW. Autonomy Preference Index - Uroonkologie (API-Uro). 2021.

47.

Grüne B, Köther AK, Büdenbender B, Michel MS, Kriegmair MC, Alpers GW. Patients’ perspective on shared decision-making in urology: A prospective study at a university hospital. World J Urol. 2021;39:4491–8. https://doi.org/10.1007/s00345-021-03794-3.CrossRefPubMed

48.

Köther AK, Alpers GW, Büdenbender B, Lenhart M, Michel MS, Kriegmair MC. Predicting decisional conflict: Anxiety and depression in shared decision making. Patient Educ Couns. 2021;104:1229–36. https://doi.org/10.1016/j.pec.2020.10.037.CrossRefPubMed

49.

Büdenbender B, Köther AK, Grüne B, Kriegmair MC, Michel MS, Alpers GW. When attitudes and beliefs get in the way of shared decision making: A mediation analysis of participation preference. Heal Expect. 2022. https://doi.org/10.1111/hex.13699.CrossRef

50.

Köther AK, Büdenbender B, Grüne B, Holbach S, Huber J, von Landenberg N, et al. Different patients, different preferences: A multicenter assessment of patients’ personality traits and anxiety in shared decision making. Cancer Med. 2022;11:2999–3008. https://doi.org/10.1002/cam4.4667.CrossRefPubMedPubMedCentral

51.

Scholl I, Van LMK, Sepucha KR, Elwyn G, Légaré F, Härter M, et al. Measurement of shared decision making - A review of instruments. Z Evid Fortbild Qual Gesundhwes. 2011;105:313–24. https://doi.org/10.1016/j.zefq.2011.04.012.CrossRefPubMed

52.

German Cancer Aid. Patientenleitlinien [Patient Guidelines]. https://www.krebshilfe.de/informieren/ueber-krebs/infothek/infomaterial-kategorie/patientenleitlinien/.

53.

Costello AB, Osborne JW. Best practices in exploratory factor analysis: Four recommendations for getting the most from your analysis. Pract Assessment, Res Eval. 2005;10. https://doi.org/10.7275/jyj1-4868.

54.

Watkins MW. Exploratory factor analysis: A guide to best practice. J Black Psychol. 2018;44:219–46. https://doi.org/10.1177/0095798418771807.CrossRef

55.

Zygmont C, Smith MR. Robust factor analysis in the presence of normality violations, missing data, and outliers: Empirical questions and possible solutions. Quant Methods Psychol. 2014;10:40–55. https://doi.org/10.20982/tqmp.10.1.p040.CrossRef

56.

Ferketich S. Aspects of item analysis. Res Nurs Heal. 1991;:165–8.

57.

Kaiser HF, Rice J. Little jiffy, mark IV. Educ Psychol Meas. 1974;34:111–7. https://doi.org/10.1177/001316447403400115.CrossRef

58.

Rhemtulla M, Brosseau-Liard PÉ, Savalei V. When can categorical variables be treated as continuous? A comparison of robust continuous and categorical SEM estimation methods under suboptimal conditions. Psychol Methods. 2012;17:354–73. https://doi.org/10.1037/a0029315.CrossRefPubMed

59.

Moshagen M, Musch J. Sample size requirements of the robust weighted least squares estimator. Methodology. 2014;10:60–70. https://doi.org/10.1027/1614-2241/a000068.CrossRef

60.

Cheng-Hsien L. The performance of ML, DWLS, and ULS estimation with robust corrections in structural equation models with ordinal variables. Psychol Methods. 2016;21:369–87. https://doi.org/10.1037/met0000093.CrossRef

61.

Zumbo BD, Gadermann AM, Zeisser C. Ordinal versions of coefficients alpha and theta for likert rating scales. J Mod Appl Stat Methods. 2007;6:21–9. https://doi.org/10.22237/jmasm/1177992180.CrossRef

62.

Flynn KE, Smith MA, Vanness D. A typology of preferences for participation in healthcare decision making. Soc Sci Med. 2006;63:1158–69.CrossRefPubMedPubMedCentral

63.

Cohen J. A power primer. Psychol Bull. 1992;112:155–9. https://doi.org/10.1037/0033-2909.112.1.155.CrossRefPubMed

64.

R Core Team. R: A Language and Environment for Statistical Computing. 2021.

65.

Wickham H, François R, Henry L, Müller K. dplyr: A grammar of data manipulation. 2021.

66.

Revelle W. psych: Procedures for psychological, psychometric, and personality research. 2021.

67.

Büdenbender B. datscience: Data Science Utility Functions. 2021.

68.

Rosseel Y. lavaan: An R package for structural equation modeling. J Stat Softw. 2012;48:1–36. https://doi.org/10.18637/jss.v048.i02.CrossRef

69.

Thériault R. lavaanExtra: Convenience Functions for Package `lavaan`. 2022.

70.

Warne RT, Larsen R. Evaluating a proposed modification of the Guttman rule for determining the number of factors in an exploratory factor analysis. Psychol Test Assess Model. 2014;56:104–23.

71.

Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns. 2006;60:301–12. https://doi.org/10.1016/j.pec.2005.06.010.CrossRefPubMed

72.

Nease RF, Brooks WB. Patient desire for information and decision making in health care decisions: The autonomy preference index and the health opinion survey. J Gen Intern Med. 1995;10:593–600. https://doi.org/10.1007/BF02602742.CrossRefPubMed

73.

Colley A, Halpern J, Paul S, Micco G, Lahiff M, Wright F, et al. Factors associated with oncology patients’ involvement in shared decision making during chemotherapy. Psychooncology. 2017;26:1972–9. https://doi.org/10.1002/pon.4284.CrossRefPubMed

74.

Arora NK, McHorney CA. Patient preferences for medical decision making: Who really wants to participate? Med Care. 2000;38:335–41.CrossRefPubMed

75.

Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D. Patient Participation: Current Knowledge and Applicability to Patient Safety. Mayo Clin Proc. 2010;85:53–62. https://doi.org/10.4065/mcp.2009.0248.CrossRefPubMedPubMedCentral

76.

van Prooijen J-W, van der Kloot WA. Confirmatory analysis of exploratively obtained factor structures. Educ Psychol Meas. 2001;61:777–92. https://doi.org/10.1177/00131640121971518.CrossRef

77.

Hu LT, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Struct Equ Model. 1999;6:1–55.CrossRef

78.

Loewenstein G. Hot-cold empathy gaps and medical decision making. Heal Psychol. 2005;24:S49-56. https://doi.org/10.1037/0278-6133.24.4.S49.CrossRef

79.

Kiesler DJ, Auerbach SM. Optimal matches of patient preferences for information, decision-making and interpersonal behavior: Evidence, models and interventions. Patient Educ Couns. 2006;61:319–41. https://doi.org/10.1016/j.pec.2005.08.002.CrossRefPubMed

80.

Waterworth S, Luker KA. Reluctant collaborators: Do patients want to be involved in decisions concerning care? J Adv Nurs. 1990;15:971–6. https://doi.org/10.1111/j.1365-2648.1990.tb01953.x.CrossRefPubMed

81.

Jahng KH, Martin LR, Golin CE, DiMatteo MR. Preferences for medical collaboration: Patient-physician congruence and patient outcomes. Patient Educ Couns. 2005;57:308–14. https://doi.org/10.1016/j.pec.2004.08.006.CrossRefPubMed

82.

Gattellari M, Butow PN, Tattersall MH. Sharing decisions in cancer care. Soc Sci Med. 2001;52:1865–78. https://doi.org/10.1016/S0277-9536(00)00303-8.CrossRefPubMed

83.

Butow PN, Devine R, Boyer M, Pendlebury S, Jackson M, Tattersall MHN. Cancer consultation preparation package: Changing patients but not physicians is not enough. J Clin Oncol. 2004;22:4401–9. https://doi.org/10.1200/JCO.2004.66.155.CrossRefPubMed

Title: Getting specific: participation preference in urooncological decision-making
Authors: Björn Büdenbender
Anja K. Köther
Maximilian C. Kriegmair
Britta Grüne
Maurice S. Michel
Georg W. Alpers
Publication date: 01-12-2023
Publisher: BioMed Central
Published in: BMC Medical Informatics and Decision Making / Issue 1/2023
Electronic ISSN: 1472-6947
DOI: https://doi.org/10.1186/s12911-023-02201-8

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Getting specific: participation preference in urooncological decision-making

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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