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Discordance Between Advanced Cancer Patients’ Perceived and Preferred Roles in Decision Making and its Association with Psychological Distress and Perceived Quality of Care



We investigated patient-reported roles of families, physicians, and patients themselves in treatment decision making and whether discordance between perceived and preferred roles is associated with psychological distress and perceived quality of care among patients with cancer.


We analyzed cross-sectional survey data from 599 adults with stage IV solid malignancy in Singapore. Stuart-Maxwell tests were used to compare patients’ perceived and preferred roles in decision making. Types of discordance were categorized as follows: involvement at a lesser level than preferred, involvement at a greater level than preferred, and no change in patient involvement. Ordinary least squares regressions examined the associations between types of discordance and patient outcomes, controlling for patient characteristics.


Discordance between perceived and preferred roles was observed in 16% of patients. Amongst patients with discordance, 33% reported being involved at a lesser level than they preferred, 47% reported being involved at a greater level than they preferred, and 19% reported discordance where level of patient involvement did not change. Multivariable analyses showed that lesser involvement than preferred and discordance with no change in patient involvement were associated with poorer quality of physician communication (β = − 9.478 [95% confidence interval {CI} − 16.303 to − 2.653] and β = − 9.184 [95% CI − 18.066 to − 0.301]) and poorer care coordination (β = − 11.658 [95% CI − 17.718 to − 5.597] and β = − 8.856 [95% CI − 16.744 to − 0.968]) compared with concordance.


Most patients reported participating at their desired level. Despite this finding, our results suggest that involving patients at a lesser level than they prefer can lead to poorer perceived quality of physician communication and care coordination and that encouraging patient participation is a safe approach to minimizing poor outcomes.

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  1. Levit LA, et al editors. Institute of medicine, Delivering high-quality cancer care: charting a new course for a system in crisis. Washington, DC: The National Academies Press; 2013. p. 412.

    Google Scholar 

  2. Degner LF, Sloan JA. Decision making during serious illness: What role do patients really want to play? J Clin Epidemiol. 1992;45(9):941–50.

    Article  CAS  Google Scholar 

  3. Sutherland HJ, et al. Cancer patients: their desire for information and participation in treatment decisions. J R Soc Med. 1989;82(5):260–3.

    Article  CAS  Google Scholar 

  4. Bruera E, et al. Treatment decisions for breast carcinoma. Cancer. 2002;94(7):2076–80.

    Article  Google Scholar 

  5. Beaver K, et al. Treatment decision making in women newly diagnosed with breast cancer. Cancer Nurs. 1996;19(1):8–19.

    Article  CAS  Google Scholar 

  6. Richards M, et al. Offering choice of treatment to patients with cancers. A review based on a symposium held at the 10th annual conference of The British Psychosocial Oncology Group, December 1993. Eur J Cancer. 1995;31(1):112–6.

    Article  Google Scholar 

  7. Ho A. Relational autonomy or undue pressure? Family’s role in medical decision-making. Scand J Caring Sci. 2008;22(1):128–35.

    Article  Google Scholar 

  8. Lin M-L, Pang M-CS, Chen C-H. Family as a whole: elective surgery patients’ perception of the meaning of family involvement in decision making. J Clin Nurs. 2013;22(1–2):271–8.

    Article  Google Scholar 

  9. Hack TF, et al. Do patients benefit from participating in medical decision making? Longitudinal follow-up of women with breast cancer. Psycho-Oncology. 2006;15(1):9–19.

    Article  Google Scholar 

  10. Bruera E, et al. Patient preferences versus physician perceptions of treatment decisions in cancer care. J Clin Oncol. 2001;19(11):2883–5.

    Article  CAS  Google Scholar 

  11. Fallowfield LJ, et al. Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. BMJ. 1990;301(6752):575–80.

    Article  CAS  Google Scholar 

  12. Morris J, Royle G. Offering patients a choice of surgery for early breast cancer: a reduction in anxiety and depression in patients and their husbands. Soc Sci Med. 1988;26(6):583–5.

    Article  CAS  Google Scholar 

  13. Gattellari M, Butow PN, Tattersall MH. Sharing decisions in cancer care. Soc Sci Med. 2001;52(12):1865–78.

    Article  CAS  Google Scholar 

  14. Brom L, et al. Congruence between patients’ preferred and perceived participation in medical decision-making: a review of the literature. BMC Med Inf Decis Mak. 2014;14(1):25.

    Article  Google Scholar 

  15. Bilodeau BA, Degner LF. Information needs, sources of information, and decisional roles in women with breast cancer. Oncol Nurs Forum. 1996;23(4):691–6.

    CAS  PubMed  Google Scholar 

  16. Hawley ST, et al. Factors associated with patient involvement in surgical treatment decision making for breast cancer. Patient Educ Couns. 2007;65(3):387–95.

    Article  Google Scholar 

  17. Brown R, et al. Meeting the decision-making preferences of patients with breast cancer in oncology consultations: impact on decision-related outcomes. J Clin Oncol. 2012;30(8):857–62.

    Article  Google Scholar 

  18. Vogel BA, Leonhart R, Helmes AW. Communication matters: the impact of communication and participation in decision making on breast cancer patients’ depression and quality of life. Patient Educ Couns. 2009;77(3):391–7.

    Article  Google Scholar 

  19. Lam W, et al. Participation and satisfaction with surgical treatment decision-making in breast cancer among Chinese women. Breast Cancer Res Treat. 2003;80:171–80.

    Article  Google Scholar 

  20. Hobbs GS, et al. The role of families in decisions regarding cancer treatments. Cancer. 2015;121(7):1079–87.

    Article  Google Scholar 

  21. Mystakidou K, et al. Cancer information disclosure in different cultural contexts. Support Care Cancer. 2004;12(3):147–54.

    Article  Google Scholar 

  22. Tan T, et al. Cancer: To tell or not to tell? Singap Med J. 1993;34(3):202–3.

    CAS  Google Scholar 

  23. Chen X, Fan R. The family and harmonious medical decision making: cherishing an appropriate confucian moral balance. J Med Philos. 2010;35(5):573–86.

    Article  Google Scholar 

  24. Teo I, et al. Cost of medical care of patients with advanced serious illness in singapore (COMPASS): prospective cohort study protocol. BMC Cancer. 2018;18(1):459.

    Article  Google Scholar 

  25. Malin JL, et al. Understanding cancer patients’ experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey. Support Care Cancer. 2006;14(8):837–48.

    Article  Google Scholar 

  26. Lyons KD, et al. Reliability and validity of the Functional Assessment of Chronic Illness Therapy-Palliative care (FACIT-Pal) scale. J Pain Symptom Manag. 2009;37(1):23–32.

    Article  Google Scholar 

  27. Ingersoll-Dayton B, Saengtienchai C. Respect for the elderly in Asia: stability and change. Int J Aging Hum Dev. 1999;48(2):113–30.

    Article  CAS  Google Scholar 

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The authors thank all the patients and caregivers who participated in our study for their time and effort. COMPASS Study Group: Ratna Singh, Rebecca A. Dent, Wee Lee Yeo, Yin Bun Cheung, Rahul Malhotra, Ravindran Kanesvaran, Alethea Chung Pheng Yee, Noreen Chan, Huei Yaw Wu, Soh Mun Chin, Allyn Yin Mei Hum, Grace Meijuan Yang, Patricia Soek Hui Neo, Nivedita V. Nadkarni.

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Correspondence to Semra Ozdemir.

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Conflicts of interest

Semra Ozdemir, Yubing Tian, Chetna Malhotra, Richard Harding, Gerald Choon Huat Koh, Kumarakulasinghe Nesaretnam Barr, Lai Heng Lee, Ssu Wynn Mon, and Eric Finkelstein have no conflicts of interest that are directly relevant to the content of this article.

Ethics approval

The study was approved by SingHealth Centralized Institutional Review Board (2015/2781).


The study was funded by the Singapore Millennium Foundation (2015-SMF-0003) and the Lien Centre for Palliative Care (LCPC-IN14–0003).

Data availability

Data used in this study are available from the corresponding author upon reasonable request.

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Code used in this study is available from the corresponding author upon reasonable request.

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All participants involved provided written consent to participate in this study.

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All authors consent to the publication of this manuscript.

Authors’ contributions

SO identified the research questions and designed the questions used in the study. SO and YT analyzed the data. All authors contributed to the writing and/or critical review of this manuscript.

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The members of the "COMPASS Study Group" mentioned in Acknowledgments section.

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Ozdemir, S., Tian, Y., Malhotra, C. et al. Discordance Between Advanced Cancer Patients’ Perceived and Preferred Roles in Decision Making and its Association with Psychological Distress and Perceived Quality of Care. Patient 14, 581–589 (2021).

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