Validity of the French version of the Autonomy Preference Index and its adaptation for patients with advanced cancer

Autoři: Isabelle Colombet aff001;  Laurent Rigal aff003;  Miren Urtizberea aff001;  Pascale Vinant aff002;  Alexandra Rouquette aff003
Působiště autorů: Université Paris Descartes, Sorbonne Paris Cité, Paris, France aff001;  AP-HP, Palliative Medicine, Cochin Hospital, Paris, France aff002;  Université Paris-Saclay, UVSQ, Inserm, CESP, Paris, France aff003;  Université Paris-Saclay, General Practice Department, Le Kremlin Bicêtre, France aff004;  AP-HP, Bicêtre Hospital, Public Health and Epidemiology Department, Le Kremlin-Bicêtre, France aff005
Vyšlo v časopise: PLoS ONE 15(1)
Kategorie: Research Article
doi: 10.1371/journal.pone.0227802



While patient-centered care is recommended as a key dimension for quality improvement, in case of serious illness, patients may have different expectations regarding information and participation in medical decision-making. In oncology, anticipation of disease worsening remains difficult, especially when patient’s preferences towards prognosis medical information are unclear. Valid tools to explore patients’ preferences could help targeting end-of-life discussions, which have been shown to decrease aggressiveness of end-of-life care. Our aim was to establish the validity and reliability of the French version of the Autonomy Preference Index (API) among patients with incurable cancer and in primary care setting. Three supplementary items were specifically developed to evaluate preparedness to anticipate disease deterioration among patients with incurable cancer.


The psychometric properties of the API translated into French were assessed among patients consecutively recruited from January to March 2017 in the waiting rooms of 19 general practitioners (N = 391) and in an oncology (N = 187) clinic in Paris. Relationships between the newly-developed items and the API subscale scores were studied.


A three correlated factors confirmatory model (two factors related to decision-making and a factor related to information-seeking preferences) showed an acceptable fit on the whole sample and no measurement invariance issue was found across settings, age, sex and educational level. Internal consistency and test-retest reliability were acceptable for the information-seeking and decision-making subscales. One of the newly-developed items on patients’ ability to anticipate a decision on the use of artificial respiration if a sudden deterioration of their illness occurred was not related to the API subscale scores.


The French version of the API was found valid and reliable for use in general practice and oncology settings. The additional items on patient preparedness to anticipate disease deterioration can be of interest to ensure that patient values guide all end-of-life clinical decisions.

Klíčová slova:

Decision making – Educational attainment – Myocardial infarction – Oncology – Patients – Primary care – Psychological attitudes – Psychometrics


1. Washington KT, Parker Oliver D, Gage LA, Albright DL, Demiris G. A multimethod analysis of shared decision-making in hospice interdisciplinary team meetings including family caregivers. Palliat Med. 2016;30: 270–278. doi: 10.1177/0269216315601545 26281854

2. Barry MJ, Edgman-Levitan S. Shared Decision Making—The Pinnacle of Patient-Centered Care. N Engl J Med. 2012;366: 780–781. doi: 10.1056/NEJMp1109283 22375967

3. Légaré F, Thompson-Leduc P. Twelve myths about shared decision making. Patient Educ Couns. 2014;96: 281–286. doi: 10.1016/j.pec.2014.06.014 25034637

4. Bélanger E, Rodríguez C, Groleau D. Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis. Palliat Med. 2011;25: 242–261. doi: 10.1177/0269216310389348 21273220

5. Pennec S, Monnier A, Pontone S, Aubry R. End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 act of parliament on patients’ rights and end of life. BMC Palliat Care. 2012;11: 25. doi: 10.1186/1472-684X-11-25 23206428

6. Charles C, Gafni A, 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;5: 681–692.

7. Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, et al. Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer. N Engl J Med. 2012;367: 1616–1625. doi: 10.1056/NEJMoa1204410 23094723

8. Gattellari M, Voigt KJ, Butow PN, Tattersall MHN. When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol Off J Am Soc Clin Oncol. 2002;20: 503–513. doi: 10.1200/JCO.2002.20.2.503 11786580

9. El-Jawahri A, Nelson-Lowe M, VanDusen H, Traeger L, Abel GA, Greer JA, et al. Patient-Clinician Discordance in Perceptions of Treatment Risks and Benefits in Older Patients with Acute Myeloid Leukemia. The Oncologist. 2019;24: 247–254. doi: 10.1634/theoncologist.2018-0317 30139841

10. Jenkins V, Solis-Trapala I, Langridge C, Catt S, Talbot DC, Fallowfield LJ. What oncologists believe they said and what patients believe they heard: an analysis of phase I trial discussions. J Clin Oncol Off J Am Soc Clin Oncol. 2011;29: 61–68. doi: 10.1200/JCO.2010.30.0814 21098322

11. Hagerty RG, Butow PN, Ellis PA, Lobb EA, Pendlebury S, Leighl N, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol Off J Am Soc Clin Oncol. 2004;22: 1721–1730. doi: 10.1200/JCO.2004.04.095 15117995

12. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA. 2008;300: 1665–1673. doi: 10.1001/jama.300.14.1665 18840840

13. Rietjens JAC, Sudore RL, Connolly M, Delden JJ van, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017;18: e543–e551. doi: 10.1016/S1470-2045(17)30582-X 28884703

14. Gaston CM, Mitchell G. Information giving and decision-making in patients with advanced cancer: A systematic review. Soc Sci Med. 2005;61: 2252–2264. doi: 10.1016/j.socscimed.2005.04.015 15922501

15. Davis MA, Hoffman JR, Hsu J. Impact of Patient Acuity on Preference for Information and Autonomy in Decision Making. Acad Emerg Med. 1999;6: 781–785. doi: 10.1111/j.1553-2712.1999.tb01206.x 10463548

16. Vinant P, Rousseau I, Huillard O, Goldwasser F, Guillard M-Y, Colombet I. [Respecting patient’s end of life wishes: feasibility study of an information on surrogate and advance directives]. Bull Cancer (Paris). 2015;102: 234–244. doi: 10.1016/j.bulcan.2015.01.009 25732047

17. Krantz DS, Baum A, Wideman MV. Assessment of preferences for self-treatment and information in health care. J Pers Soc Psychol. 1980;39: 977–990. doi: 10.1037//0022-3514.39.5.977 7441487

18. Hagerty RG, Butow PN, Ellis PM, Lobb EA, Pendlebury SC, Leighl N, et al. Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis. J Clin Oncol Off J Am Soc Clin Oncol. 2005;23: 1278–1288. doi: 10.1200/JCO.2005.11.138 15718326

19. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients’ desire for autonomy. J Gen Intern Med. 1989;4: 23–30. doi: 10.1007/bf02596485 2644407

20. Gibson PG, Talbot PI, Toneguzzi RC. Self-Management, Autonomy, and Quality of Life in Asthma. Chest. 1995;107: 1003–1008. doi: 10.1378/chest.107.4.1003 7705105

21. Hill SA, Laugharne R. Decision making and information seeking preferences among psychiatric patients. J Ment Health. 2006;15: 75–84. doi: 10.1080/09638230500512250

22. Spies CD, Schulz CM, Weiß‐Gerlach E, Neuner B, Neumann T, Dossow VV, et al. Preferences for shared decision making in chronic pain patients compared with patients during a premedication visit. Acta Anaesthesiol Scand. 2006;50: 1019–1026. doi: 10.1111/j.1399-6576.2006.01097.x 16923100

23. Simon D, Kriston L, Loh A, Spies C, Scheibler F, Wills C, et al. Confirmatory factor analysis and recommendations for improvement of the Autonomy-Preference-Index (API). Health Expect. 2010;13: 234–243. doi: 10.1111/j.1369-7625.2009.00584.x 20579122

24. Morandi S, Golay P, Vazquez-Montes M, Rugkåsa J, Molodynski A, Yeeles K, et al. Factorial structure and long-term stability of the Autonomy Preference Index. Psychol Assess. 2017;29: 110–115. doi: 10.1037/pas0000327 27124100

25. Bonfils KA, Adams EL, Mueser KT, Wright-Berryman JL, Salyers MP. Factor structure of the autonomy preference index in people with severe mental illness. Psychiatry Res. 2015;228: 526–530. doi: 10.1016/j.psychres.2015.06.004 26117249

26. Stein RA, Sharpe L, Bell ML, Boyle FM, Dunn SM, Clarke SJ. Randomized controlled trial of a structured intervention to facilitate end-of-life decision making in patients with advanced cancer. J Clin Oncol Off J Am Soc Clin Oncol. 2013;31: 3403–3410. doi: 10.1200/JCO.2011.40.8872 23897967

27. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol. 2010;63: 737–745. doi: 10.1016/j.jclinepi.2010.02.006 20494804

28. Millsap RE. Statistical Approaches to Measurement Invariance. 1 edition. New York: Routledge; 2011.

29. American Educational Research Association, American Psychological Association. Standards for Educational and Psychological Testing. Washington, D.C: American Educational Research Association; 2014.

30. Rouquette A, Hardouin J-B, Vanhaesebrouck A, Sébille V, Coste J. Differential Item Functioning (DIF) in composite health measurement scale: Recommendations for characterizing DIF with meaningful consequences within the Rasch model framework. PLOS ONE. 2019;14: e0215073. doi: 10.1371/journal.pone.0215073 30964935

31. Mokkink LB, de Vet HCW, Prinsen CAC, Patrick DL, Alonso J, Bouter LM, et al. COSMIN Risk of Bias checklist for systematic reviews of Patient-Reported Outcome Measures. Qual Life Res. 2018;27: 1171–1179. doi: 10.1007/s11136-017-1765-4 29260445

32. Wild D, Grove A, Martin M, Eremenco S, McElroy S, Verjee-Lorenz A, et al. Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: Report of the ISPOR Task Force for Translation and Cultural Adaptation. Value Health. 2005;8: 94–104. doi: 10.1111/j.1524-4733.2005.04054.x 15804318

33. de Vet HCW, Terwee CB, Mokkink LB, Knol DL. Measurement in Medicine: A Practical Guide. Cambridge University Press; 2011. Available:

34. Epstein J, Santo RM, Guillemin F. A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus. J Clin Epidemiol. 2015;68: 435–441. doi: 10.1016/j.jclinepi.2014.11.021 25698408

35. Epstein J, Osborne RH, Elsworth GR, Beaton DE, Guillemin F. Cross-cultural adaptation of the Health Education Impact Questionnaire: experimental study showed expert committee, not back-translation, added value. J Clin Epidemiol. 2015;68: 360–369. doi: 10.1016/j.jclinepi.2013.07.013 24084448

36. Muthen LK, Muthen BO. Mplus user’s guide. Los Angeles; 2010.

37. Hu L, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Struct Equ Model Multidiscip J. 1999;6: 1–55. doi: 10.1080/10705519909540118

38. Brown TA. Confirmatory factor analysis for applied research. 2d ed. New York: The Guilford Press; 2015.

39. Kline RB. Principles and Practice of Structural Equation Modeling. 3rd ed. New York: The Guilford Press; 2006.

40. Chen FF. Sensitivity of Goodness of Fit Indexes to Lack of Measurement Invariance. Struct Equ Model Multidiscip J. 2007;14: 464–504. doi: 10.1080/10705510701301834

41. Cheung GW, Rensvold RB. Evaluating Goodness-of-Fit Indexes for Testing Measurement Invariance. Struct Equ Model Multidiscip J. 2002;9: 233–255. doi: 10.1207/S15328007SEM0902_5

42. Marsh HW, Nagengast B, Morin AJS. Measurement invariance of big-five factors over the life span: ESEM tests of gender, age, plasticity, maturity, and la dolce vita effects. Dev Psychol. 2013;49: 1194–1218. doi: 10.1037/a0026913 22250996

43. Cronbach LJ, Meehl PE. Construct validity in psychological tests. Psychol Bull. 1955;52: 281–302. doi: 10.1037/h0040957 13245896

44. Watkins MW. The reliability of multidimensional neuropsychological measures: from alpha to omega. Clin Neuropsychol. 2017;31: 1113–1126. doi: 10.1080/13854046.2017.1317364 28429633

45. Shrout PE, Fleiss JL. Intraclass correlations: uses in assessing rater reliability. Psychol Bull. 1979;86: 420–428. doi: 10.1037//0033-2909.86.2.420 18839484

46. Muthén LK, Muthén BO. (1998–2012). MPlus. Statistical Analysis With Latent Variables. User’s Guide. Seventh Edition. 2012.

47. StataCorp LP. Stata Statistical Software: Release 12.1. College Station, TX: StataCorp, L.P.; 2012.

48. Mack JW, Cronin A, Keating NL, Taback N, Huskamp HA, Malin JL, et al. Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol Off J Am Soc Clin Oncol. 2012;30: 4387–4395. doi: 10.1200/JCO.2012.43.6055 23150700

49. Maciejewski PK, Prigerson HG. Emotional Numbness Modifies the Effect of End-of-Life Discussions on End-of-Life Care. J Pain Symptom Manage. 2013;45: 841–847. doi: 10.1016/j.jpainsymman.2012.04.003 22926093

50. Hoerger M, Epstein RM, Winters PC, Fiscella K, Duberstein PR, Gramling R, et al. Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers. BMC Cancer. 2013;13: 188. doi: 10.1186/1471-2407-13-188 23570278

51. Solomon R, Smith C, Kallio J, Fenollosa A, Benerofe B, Jones L, et al. Speaking Up: How Patient and Physician Voices Shaped a Trial to Improve Goals-of-Care Discussions. Patient—Patient-Centered Outcomes Res. 2017;10: 489–501. doi: 10.1007/s40271-017-0226-z 28364384

52. Anagnostou D, Sivell S, Noble S, Lester J, Byrne A, Sampson C, et al. Development of an intervention to support patients and clinicians with advanced lung cancer when considering systematic anticancer therapy: protocol for the PACT study., Development of an intervention to support patients and clinicians with advanced lung cancer when considering systemic anticancer therapy: protocol for the PACT study. BMJ Open BMJ Open. 2017;7, 7: e015277–e015277. doi: 10.1136/bmjopen-2016-015277 28706092

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