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Understanding treatment decision making: Contexts, commonalities, complexities, and challenges

  • Published:
Annals of Behavioral Medicine

Abstract

Background: The diagnosis of cancer sets off a cascade of complex decisions at a time when patients feel vulnerable and distressed. Although clinical decisions used to follow one standard, many guidelines now outline several options and include explicit recognition of the need to incorporate patients’ preferences to determine the most appropriate treatment.Purpose: The purpose of this article is to provide a brief overview of empirical studies about cancer patients’treatment-related decision making, to highlight the areas of congruence and divergence in that empirical literature, and then to generate a framework that points to future interventions and research.Methods: Through a group discussion with a range of experts in the field, we generated a framework for the critical treatment decisions and key issues within those decisions. Then, we reviewed the literature describing the experiences of cancer patients and evaluating interventions designed to improve the quality of treatment decisions.Results: We identified four major differences that influence decision making across cancers and across individuals with the same diagnosis.We also identified four common themes across situations and people. There is considerable evidence that decision aids can improve the quality of decisions across a range of diseases, although the data for cancer treatment decision making are limited. Other interventions such as navigation-skill training are promising but have little evidence of benefit for cancer decisions.Conclusions: There are many opportunities for behavioral research to extend and contribute to the understanding and improvement of cancer treatment decision making. Some key areas in need of research include developing taxonomies of disease and patient characteristics and increasing understanding of the lived experiences of cancer survivors, of the influence of time and timing, of the relationship of information and preferences, and of participation in randomized clinical trials.

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References

  1. Spiegel D: How do you feel about cancer now? Survival and psychosocial support.Public Health Report. 1995,110:298–300.

    CAS  Google Scholar 

  2. Nordin K, Berglund G, Glimelius B, Sjoden PO: Predicting anxiety and depression among cancer patients: A clinical model.European Journal of Cancer. 2001,37:376–384.

    Article  PubMed  CAS  Google Scholar 

  3. Scarth H, Cantin J, Levine M, et al.: Clinical practice guidelines for the care and treatment of breast cancer: Mastectomy or lumpectomy? The choice of operation for clinical stages I and II breast cancer (summary of the 2002 update).Canadian Medical Association Journal. 2002,167:154–155.

    PubMed  Google Scholar 

  4. Arora N: Interacting with cancer patients: The significance of physicians’ communication behavior.Social Science & Medicine. 2003,57:791–806.

    Article  Google Scholar 

  5. Smith RA, Cokkinides V, Eyre HJ: American Cancer Society guidelines for the early detection of cancer.CA: Cancer Journal for Clinicians. 2005,55:31–44.

    Google Scholar 

  6. Krupat E, Fancey M, Cleary PD: Information and its impact on satisfaction among surgical patients.Social Science & Medicine. 2000,51:1817–1825.

    Article  CAS  Google Scholar 

  7. Ford S, Fallowfield L, Lewis S: Can oncologists detect distress in the out-patients and how satisfied are they with their performance during bad news consultations?British Journal of Cancer. 1994,70:767–770.

    PubMed  CAS  Google Scholar 

  8. Meade CD: Cancer, culture and literacy: Critical next steps in improving care for diverse populations.Cancer Control. 2005,12:4–5.

    PubMed  Google Scholar 

  9. Tercyak KP, Lerman C, Peshkin BN, et al.: Effects of coping style and BRCA1 and BRCA2 test results on anxiety among women participating in genetic counseling and testing for breast and ovarian cancer risk.Health Psychology. 2001,20:217–222.

    Article  PubMed  CAS  Google Scholar 

  10. Bowman KF, Deimling GT, Smerglia V, Sage V, Kahana B: Appraisal of the cancer experience by older adult long term survivors.Pyscho-oncology. 2002,12:226–238.

    Article  Google Scholar 

  11. Hall WH, Jani AB, Ryan JK, Narayan S, Vigazakamar S: Impact of age and comorbidity on survival outcomes and treatment patterns in prostate cancer.Prostate Cancer and Prostatic Disease. 2005,8:22–30.

    Article  CAS  Google Scholar 

  12. Montgomery GH, Erblich J, DiLorenzo T, Bovbjerg DH: Family and friends with disease: Their impact on perceived risk.Preventive Medicine. 2003,37:242–249.

    Article  PubMed  Google Scholar 

  13. Weber BA, Sherwill-Navarro P: Psychosocial consequences of prostate cancer: 30 years of research.Geriatric Nursing. 2005,26:166–175.

    Article  PubMed  Google Scholar 

  14. Spencer S, Lehman J,Wynings C, et al.: Concerns about breast cancer and relations to psychosocial well-being in a multiethnic sample of early-stage patients.Health Psychology. 1999,18:159–168.

    Article  PubMed  CAS  Google Scholar 

  15. Taylor K, Lamdan R, Siegel J, et al.: Treatment regimen, sexual attractiveness concerns and psychological adjustment among African American breast cancer patients.Psycho-oncology. 2002,11:505–517.

    Article  PubMed  Google Scholar 

  16. Randall TC, Armstrong K: Differences in treatment and outcome between African-American and white women with endometrial cancer.Journal of Clinical Oncology. 2003,15:4200–4206.

    Article  Google Scholar 

  17. Wennberg J, Fisher E, Skinner gnJ: Geography and the debate over Medicare reform.Health Affairs. 2002,Supp Web Exclusives: W94-W114.

  18. Nattinger AB, Gottleib MS, Veum J, Yahnke D, Goodwin JS: Geographic variations in the use of breast conserving treatments.New England Journal of Medicine. 1992,326:1102–1107.

    Article  PubMed  CAS  Google Scholar 

  19. Graefen M,Walz J, Chun KH, et al.: Reasonable delay of surgical treatment in men with localized prostate cancer—Impact on prognosis?European Urology. 2005,47:756–760.

    Article  PubMed  Google Scholar 

  20. Lee DK, Allareddy V, O’Donnell MA, Williams RD, Konety BR: Does the interval between prostate biopsy and radical prostatectomy affect the immediate post-operative outcome?BJU International. 2006,97:48–50.

    Article  PubMed  Google Scholar 

  21. Terhaard CH, Kal HB, Hordijk GJ: Why to start the concomitant boost in accelerated radiotherapy for advanced laryngeal cancer in week 3.International Journal Radiation Oncology and Biological Physics. 2005,62:62–69.

    Article  Google Scholar 

  22. Janis I, Mann L:Decision Making. NewYork: Free Press, 1977.

    Google Scholar 

  23. Fisher B, Anderson S, Bryant J, et al.: Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer.New England Journal of Medicine. 2002,347:1233–1241.

    Article  PubMed  Google Scholar 

  24. Veronesi U, Cascinelli N, Mariani L, et al.: Twenty-year follow-up of a randomized study comparing breast-conserving surgery with radical mastectomy for early breast cancer.New England Journal of Medicine. 2002,347:1227–1232.

    Article  PubMed  Google Scholar 

  25. Katz SJ, Lantz PM, Janz NK, et al.: Patient involvement in surgery treatment decisions for breast cancer.Journal of Clinical Oncology. 2005,23:5526–5533.

    Article  PubMed  Google Scholar 

  26. McNeil BJ, Weischelbaum R, Pauker SG: Speech and survival: Tradeoffs between quality and quantity of life in laryngeal cancer.New England Journal of Medicine. 1981,305:982–987.

    Article  PubMed  CAS  Google Scholar 

  27. Feldman-Stewart D, Brundage MD, Van Manen L, Svenson O: Patient-focused decision-making in early-stage prostate cancer: Insights from a cognitively based decision aid.Health Expectations. 2004,7:126–141.

    Article  PubMed  Google Scholar 

  28. Phipps E, True G, Harris D, et al.: Approaching the end of life: Attitudes, preferences, and behaviors of African-American and white patients and their family caregivers.Journal of Clinical Oncology. 2003,21:549–554.

    Article  PubMed  Google Scholar 

  29. Arora N: Interacting with cancer patients: The significance of Physicians’ communication behavior.Social Science & Medicine. 2003,57:791–806.

    Article  Google Scholar 

  30. Jahraus D, Sokolosky S, Thurston N, Guo D: Evaluation of an education program for patients with breast cancer receiving radiation therapy.Cancer Nursing. 2002,25:266–275.

    Article  PubMed  Google Scholar 

  31. Belkora J:Going to the Doctor?Retrieved February 28, 2006 from http://www.guidesmith.org/going-to-the-doctor/

  32. Thompson SC, Pitts JS, Schwankovsky L: Preferences for involvement in medical decision-making: Situational and demographic influences.Patient Education and Counseling. 1993,22:133–140.

    Article  PubMed  CAS  Google Scholar 

  33. Wallberg B, Michelson H, Nystedt M, et al.: Information needs and preferences for participation in treatment decisions among Swedish breast cancer patients.Acta Oncologica. 2000,39:467–476.

    Article  PubMed  CAS  Google Scholar 

  34. Arora NK, McHorney CA: Patient preferences for medical decision making: Who really wants to participate?Medical Care. 2000,38:335–341.

    Article  PubMed  CAS  Google Scholar 

  35. Kelner M: Activists and delegators: Elderly patients’ preferences about control at the end of life.Social Science & Medicine. 1995,41:537–545.

    Article  CAS  Google Scholar 

  36. Bruera E, Willey JS, Palmer JL, Rosales M: Treatment decisions for breast carcinoma: Patient preferences and physician perceptions.Cancer. 2002,94:2076–2080.

    Article  PubMed  Google Scholar 

  37. Butow P, Maclean M, Dunn S, Tattersall M, Boyer M: The dynamics of change: Cancer patients’ preferences for information, involvement and support.Annals of Oncology. 1997,8:857–863.

    Article  PubMed  CAS  Google Scholar 

  38. Say R, Murtagh M, Thomson R: Patients’ preference for involvement in medical decision making: A narrative review.Patient Education and Counseling. 2006,60:102–114.

    Article  PubMed  Google Scholar 

  39. Jansen SJ, Otten W, Stiggelbout AM: Review of determinants of patients’ preferences for adjuvant therapy in cancer.Journal of Clinical Oncology. 2004,22:3181–3190.

    Article  PubMed  Google Scholar 

  40. Gabbay BB, Matsumura S, Etzioni S, et al.: Negotiating end-of-life decision making: A comparison of Japanese and U.S. residents’ approaches.Academic Medicine. 2005,80:617–621.

    Article  PubMed  Google Scholar 

  41. Roberts JA, Brown D, Elkins T, Larson DB: Factors influencing views of patients with gynecologic cancer about end-of-life decisions.American Journal of Obstetrics & Gynecology. 1997,176:166–172.

    Article  CAS  Google Scholar 

  42. Patel HR, Mirsadraee S, Emberton M: The patient’s dilemma: Prostate cancer treatment choices.Journal of Urology. 2003,169:828–833.

    Article  PubMed  CAS  Google Scholar 

  43. Silvestri GA, Knittig S, Zoller JS, Nietert PJ: Importance of faith on medical decisions regarding cancer care.Journal of Clinical Oncology. 2003,21:1379–1382.

    Article  PubMed  Google Scholar 

  44. Liang W, Burnett CB, Rowland JH, et al.: Communication between physicians and older women with localized breast cancer: Implications for treatment and patient satisfaction.Journal of Clinical Oncology. 2002,20:1008–1016.

    Article  PubMed  Google Scholar 

  45. Sainio C, Eriksson E, Lauri S: Patient participation in decision making about care.Cancer Nursing. 2001,24:172–179.

    Article  PubMed  CAS  Google Scholar 

  46. Roter D, Stewart M, Putnam S, et al.: Communication patterns of primary care physicians.Journal of the American Medical Association. 1997,277:350–356.

    Article  PubMed  CAS  Google Scholar 

  47. Suchman AL, Markakis K, Beckman HB, Frankel R: A model of empathic communication in the medical interview.Journal of the American Medical Association. 1997,277:678–682.

    Article  PubMed  CAS  Google Scholar 

  48. Sepucha K, Belkora J, Mutchnick S, Esserman L: Consultation planning to help patients prepare for medical consultations: Effect on communication and satisfaction for patients and physicians.Journal of Clinical Oncology. 2002,20:2695–2700.

    Article  PubMed  Google Scholar 

  49. Bergsma J:Doctors and Patients: Strategies in Long-Term Illness. Boston: Kluwer, 1997.

    Google Scholar 

  50. Gattellari M, Voight KJ, Butow PN, Tattersall MH: When the treatment goal is not cure: Are cancer patients equipped to make informed decisions?Journal of Clinical Oncology. 2002,20:503–513.

    Article  PubMed  Google Scholar 

  51. Butow PN, Dowsett S, Hagerty R, Tattersall MH: Communicating prognosis to patients with metastatic disease: What do they really want to know?Supportive Care in Center. 2002,10:161–168.

    Article  CAS  Google Scholar 

  52. Janz NK, Wren PA, Copeland LA, et al.: Patient-physician concordance: Preferences, perceptions, and factors influencing the breast cancer surgical decision.Journal of Clinical Oncology. 2004,22:3091–3098.

    Article  PubMed  Google Scholar 

  53. Bruera E, Sweeney C, Calder K, Palmer L, Benisch-Tolley S: Patient preferences versus physician perceptions of treatment decisions in cancer care.Journal of Clinical Oncology. 2001,19:2883–2885.

    PubMed  CAS  Google Scholar 

  54. Institute of Medicine and National Research Council:From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press, 2006.

    Google Scholar 

  55. Kingson ER:Lessons from Joan: Living and Loving with Cancer, a Husband’s Story. Syracuse, NY: Syracuse University Press, 2005.

    Google Scholar 

  56. Bhatnagan V, Kaplan RM: Treatment options for prostate cancer: Evaluating the evidence.American Family Physician. 2005,71:1915–1922.

    Google Scholar 

  57. National Research Council:Networking health: Prescription for the Internet. Washington, DC: National Academic Press, 2000.

    Google Scholar 

  58. Rice RE, Katz JE:The Internet and Health Communication. Thousand Oaks, CA: Sage, 2001.

    Google Scholar 

  59. Blank TO, Adams-Blodnieks M: The who and the what of usage of two cancer online communities.Computers in Human Behavior(in press, 2006).

  60. Sullivan CF: Gendered cybersupport: A thematic analysis of two online cancer support groups.Journal of Health Psychology. 2003,8:83–103.

    Article  Google Scholar 

  61. Stacey D, O’Connor A:A-Z Inventory of Decision Aids. Retrieved August 19, 2005 from http://decisionaid.ohri.ca/ AZinvent.php

  62. Whelan TM, O’Brien MA, Villasis-Keever M, et al.:Impact of Cancer-Related Decision Aids, Evidence Report/Technology Assessment Number 46, (Prepared by McMaster University under Contract No. 290-97-0017.) AHRQ Publication No. 02-E004. Rockville, MD: Agency for Healthcare Research and Quality, July 2002.

    Google Scholar 

  63. O’Connor A, Stacey D, Rovner D, et al.: Decision aids for people facing health treatment or screening decisions.Cochrane Database System Review. 2001,3:CD001431.

    Google Scholar 

  64. O’Connor A, Fiset V, DeGrasse C, et al.: Decision aids for patients considering options affecting cancer outcomes: Evidence of efficacy and policy implications.Journal of the National Cancer Institute Monographs. 1999,25:67–80.

    PubMed  Google Scholar 

  65. O’Connor A, Elwyn G, Stacey D:IPDAS Voting Document. Retrieved February 28, 2006 from http://ipdas.ohri.ca/IPDAS_ Second_Round.pdf

  66. Psooy BJ, Schreuer D, Borgaonkar J, Caines JS: Patient navigation: Improving timeliness in the diagnosis of breast abnormalities.Canadian Association of Radiologists Journal. 2004,55:145–150.

    PubMed  Google Scholar 

  67. Brown RF, Butow PN, Dunn SM, Tattersall MH: Promoting patient participation and shortening cancer consultations: A randomised trial.British Journal of Cancer. 2001,85:1273–1279.

    Article  PubMed  CAS  Google Scholar 

  68. Brown R, Butow PN, Boyer MJ, Tattersall MH: Promoting patient participation in the cancer consultation: Evaluation of a prompt sheet and coaching in question-asking.British Journal of Cancer. 1999,80:242–248.

    Article  PubMed  CAS  Google Scholar 

  69. Sepucha K, Belkora J, Tripathy D, Esserman L: Building bridges between physicians and patients: Results of a pilot study examining new tools for collaborative decision making.Journal of Clinical Oncology. 2000,18:1230–1238.

    PubMed  CAS  Google Scholar 

  70. Freeman HP, Chu KC: Determinants of cancer disparities: Barriers to cancer screening, diagnosis, and treatment.Surgical Oncology Clinics of North America. 2005,14:655–669.

    Article  PubMed  Google Scholar 

  71. Anderson JO, Martin PG: Narratives and healing: Exploring one family’s stories of cancer survivorship.Health Communication. 2003,15:133–143.

    Article  PubMed  Google Scholar 

  72. Lee CS: Use of narrative in understanding how cancer affects development: The stories of one survivor.Journal of Health Psychology. 2004,6:283–293.

    Article  Google Scholar 

  73. Llewellyn-Thomas HA, Sutherland HJ, Thiel EC: Do patients’ evaluations of a future health state change when they actually enter that state?Medical Care. 1993,31:1002–1012.

    Article  PubMed  CAS  Google Scholar 

  74. Llewellyn-Thomas HA, Schwartz C: Response shift effects in Patients’ evaluations of health states: Sources of artifact. In Schwartz C, Sprangers M (eds),Adaptation to Changing Health: Response Shift in Quality-of-Life Research. Washington, DC: American Psychological Association Press, 2000, 109–122.

    Chapter  Google Scholar 

  75. O’Connor A, Edwards A: The role of decision aids in promoting evidence-based patient choice. In Edwards A, Elwyn G (eds),Evidence-Based Patient Choice: Inevitable or Impossible? Oxford, UK: Oxford University Press, 2000, 220–242.

    Google Scholar 

  76. Eysenback G, Jadad A: Consumer health informatics in the Internet age. In Edwards A, Elwyn G (eds),Evidence-Based Patient Choice: Inevitable or Impossible? Oxford, UK: Oxford University Press, 2000, 289–307.

    Google Scholar 

  77. Llewellyn-Thomas HA, Sutherland HJ, Tritchler DL, et al.: Benign and malignant breast disease: The relationship between women’s health status and health values.Medical Decision Making. 1991,11:180–188.

    Article  PubMed  CAS  Google Scholar 

  78. Palda VA, Llewellyn-Thomas HA, MacKenzie RG, et al.: Breast cancer patients’ attitudes about rationing postlumpectomy radiation therapy: Applicability of the probability trade-off method to policy-making.Journal of Clinical Oncology. 1997,15:3192–3200.

    PubMed  CAS  Google Scholar 

  79. Holmes-Rovner H, Llewellyn-Thomas H, Edwards G: Moving to the mainstream. In Edwards A, Elwyn G (eds),Evidence- Based Patient Choice: Inevitable or Impossible? Oxford, UK: Oxford University Press, 2000, 270–288.

    Google Scholar 

  80. Llewellyn-Thomas HA, McGreal MJ, Thiel EC, Fine S, Erlichman C: Patients’ willingness to enter clinical trials: Measuring the association with perceived benefit and preference for decision participation.Social Science and Medicine. 1991,32:35–42.

    Article  PubMed  CAS  Google Scholar 

  81. Llewellyn-Thomas HA, McGreal MJ, Thiel EC: Cancer patients’ decision making and trial entry preferences: The effects of "framing" information about short-term toxicity and longterm survival.Medical Decision Making. 1995,15:4–12.

    Article  PubMed  CAS  Google Scholar 

  82. Llewellyn-Thomas HA, Thiel EC, Sem FWC, Harrison-Woermke DE: Presenting clinical trial information: A comparison of methods.Patient Education and Counseling. 1995,25:97–107.

    Article  PubMed  CAS  Google Scholar 

  83. Naylor CD, Llewellyn-Thomas HA: Can there be a more patient- centered approach to determining clinically important effect sizes for randomized treatment trials?Journal of Clinical Epidemiology. 1994,47:787–795.

    Article  PubMed  CAS  Google Scholar 

  84. McPherson K, Britton AR,Wennberg JE: Are randomized controlled trials controlled? Patient preferences and unblind trials.Journal of the Royal Society of Medicine. 1997,90:652–656.

    PubMed  CAS  Google Scholar 

  85. Birkmeyer NJ,Weinstein JN, Tosteson AN, et al.: Design of the Spine Patient Outcomes Research Trial (SPORT).Spine. 2002,27:1361–1372.

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Human Development and Family Studies, University of Connecticut, 348 Mansfield Road, Unit 2058, 06269-2058, Storrs, CT

    Thomas Blank Ph.D.

  2. Cancer Control Program Lombardi Comprehensive Cancer Center, Georgetown University, USA

    Kristi Graves Ph.D.

  3. General Medicine Division Health Decision Research Unit, Massachusetts General Hospital, Harvard Medical School, USA

    Karen Sepucha Ph.D.

  4. Center for Shared Decision Making Department of Community and Family Medicine, Dartmouth Medical School, USA

    Hilary Llewellyn-Thomas Ph.D.

Authors
  1. Thomas Blank Ph.D.
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  2. Kristi Graves Ph.D.
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  3. Karen Sepucha Ph.D.
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  4. Hilary Llewellyn-Thomas Ph.D.
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Correspondence to Thomas Blank Ph.D..

Additional information

We thank all who participated in the roundtable discussion of “Treatment Decision Making” at the Preconference workshop “Decision Making in the Cancer Context: Translation from Basic Science through Population Health” at the Society of Behavioral Medicine meetings, April 13, 2005. Authorship contribution was equal and author order is, thus, arbitrary.

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Blank, T., Graves, K., Sepucha, K. et al. Understanding treatment decision making: Contexts, commonalities, complexities, and challenges. ann. behav. med. 32, 211–217 (2006). https://doi.org/10.1207/s15324796abm3203_6

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