Across a wide variety of medical settings, patients report that they want detailed information about their condition and their treatment whereas stated desire for input into decision making is skewed more in the direction of physician-only or at least collaborative decision-making. These results, along with the contextual and individual difference factors associated with increased willingness to relinquish control (lower educational level, more serious illness, increasing age), indicate that patients want to assume control if they feel it will be beneficial to them to do so. The findings, however, are based largely on the relationship of patients’ mean scores to arbitrarily determined scale midpoints on measures with little or no criterion-related validity. These measures also show insufficient overlap with better validated measures of desire for health care control, which indicate more normally distributed scores and a broader range of individual differences among respondents. Findings are discussed in terms of the need for further research on the structure (dimensionality) and stability of the construct desire for health care control and issues involved in conducting needed criterion-related validational work.
Auerbach, S. M. (2000). Should patients have control over their own health care? Empirical evidence and research issues. Annals of Behavioral Medicine, 22, 246–259.
2.
Auerbach, S. M., & Gramling, S. E. (1998). Stress management: Psychological foundations. Upper Saddle River, NJ: Prentice Hall.
3.
Auerbach, S. M., Martelli, M. F., & Mercuri, L. G. (1983). Anxiety, information, interpersonal impacts and adjustment to a stressful health care situation. Journal of Personality and Social Psychology, 44, 1284–1296.
4.
Averill, J. R. (1973). Personal control over aversive stimuli and its relationship to stress. Psychological Bulletin, 80, 286–303.
5.
Beaver, K., Luker, K. A., Owens, R. G., Leinster, S. J., Degner, L. F., & Sloan, J. A. (1996). Treatment decision making in women newly diagnosed with breast cancer. Cancer Nursing, 19, 8–19.
6.
Beisecker, A. E. (1988). Aging and the desire for information and input in medical decisions: Patient consumerism in medical encounters. Gerontologist, 28, 330–335.
7.
Beisecker, A. E., & Beisecker, T. D. (1990). Patient information-seeking behaviors when communicating with doctors. Medical Care, 28, 19–28.
8.
Beisecker, A. E., Helmig, L., Graham, D., & Moore, W. P. (1994). Attitudes of oncologists, oncology nurses, and patients from a women's clinic regarding medical decision making for older and younger breast cancer patients. Gerontologist, 34, 505–512.
9.
Beisecker, A. E., Murden, R. A., Moore, W. P., Graham, D., & Helmig, L. C. (1996). Attitudes of medical students and primary care physicians regarding input of older and younger patients in medical decisions. Medical Care, 34, 126–137.
10.
Bilodeau, B. A., & Degner, L. F. (1996). Information needs, sources of information, and decisional roles in women with breast cancer. Oncology Nursing Forum, 23, 691–696.
11.
Blanchard, C. G., Labreque, M. S., Ruckdeschel, J. C., & Blanchard, E. (1988). Information and decisionmaking preferences of hospitalized adult cancer patients. Social Science and Medicine, 27, 1139–1145.
12.
Braddock, C. H., Edwards, K. A., Hasenberg, N. M., Laidley, T. L., & Levinson, W. (1999). Informed decision making in outpatient practice: Time to get back to basics. Journal of the American Medical Association, 282, 2313–2320.
13.
Bradley, C., Gamsu, D. S., Moses, J. L., & Knight, G. (1987). The use of diabetes-specific perceived control and health belief measures to predict treatment choice and efficacy in a feasibility study of continuous subcutaneous insulin infusion pumps. Psychology and Health, 1, 133–146.
14.
Brandt, B. (1991). Information needs and selected variables in patients receiving brachytherapy. Oncology Nursing Forum, 18, 1221–1229.
15.
Brody, D. S. (1980). The patient's role in clinical decision making. Annals of Internal Medicine, 93, 718–722.
16.
Burger, J. M. (1989). Negative reactions to increases in perceived control. Journal of Personality and Social Psychology, 56, 246–256.
17.
Burger, J. M. (1990). Desire for control and interpersonal interaction style. Journal of Research in Personality, 24, 32–44.
18.
Cassileth, B. R., Seidman, E. J., Soloway, M. S., Hait, H. I., Vogelzang, N. J., Kennealey, G. T., & Schellhammer. (1989). Patients’ choice of treatment in Stage D prostate cancer. Urology, 33(Suppl), 57–62.
19.
Cassileth, B. R., Zupkis, R. V., Sutton-Smith, K., & March, V. (1980). Information and participation preferences among cancer patients. Annals of Internal Medicine, 92, 832–836.
20.
Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science and Medicine, 44, 681–692.
21.
Christensen, A. J., Smith, T. W., Turner, C. W., & Cundick, K. E. (1994). Patient adherence and adjustment in renal dialysis: A person treatment interactive approach. Journal of Behavioral Medicine, 17, 549–566.
22.
Cromwell, R. L., Butterfield, E. C., Brayfield, F. M., & Curry, J. J. (1977). Acute myocardial infarction: Reaction and recovery. St Louis: Mosby.
23.
Davison, B. J., Degner, L. F., & Morgan, T. R. (1995). Information and decision-making preferences of men with prostate cancer. Oncology Nursing Forum, 22, 1401–1408.
24.
Deber, R. B., Kraetschmer, N., & Irvine, J. (1996). What role do patients wish to play in treatment decision making?Archives of Internal Medicine, 156, 1414–1420.
25.
deCharms, R. (1968). Personal causation: The internal affective determinants of behavior. New York: Academic Press.
26.
Degner, L. F., & Beaton, J. I. (1987). Life-death decisions in health care. Washington, DC: Hemisphere.
27.
Degner, L. F., & Russell, C. A. (1988). Preferences for treatment control among adults with cancer. Research in Nursing and Health, 11, 367–374.
28.
Degner, L. F., & Sloan, J. A. (1992). Decision making during serious illness: What role do patients really want to play?Journal of Clinical Epidemiology, 45, 941–950.
29.
Degner, L. F., Kristjanson, L. J., Bowman, D., Sloan, J. A., Carriere, K. C., O’Neil, J., Bilodeau, B., Watson, P., & Mueller, B. (1997). Information needs and decisional preferences in women with breast cancer. Journal of the American Medical Association, 277, 1485–1492.
30.
Elit, L., Levine, M. N., Gafni, A., Whelan, T. J., Doig, G., Streiner, D. L., & Rosen, R. (1996). Patient preferences for therapy in advanced epithelial ovarian cancer: Development, testing, and application of a bedside decision instrument. Gynecologic Oncology, 62, 329–335.
31.
Ende, J., Kazis, L., Ash, A., & Moskowitz, M. A. (1989). Measuring patients’ desire for autonomy. Journal of General Internal Medicine, 4, 23–30.
32.
Faden, R. R., Becker, C., Lewis, C., Freeman, J., & Faden, A. I. (1981). Disclosure of information to patients in medical care. Medical Care, 19, 718–733.
33.
Ford, S., Fallowfield, L. & Lewis, S. (1996). Doctor-patient interactions in oncology. Social Science and Medicine, 42, 1511–1519.
34.
Greenfield, S., Kaplan, S., & Ware, J. E. (1985). Expanding involvement in patient care: Effects on patient outcomes. Annals of Internal Medicine, 102, 520–528.
35.
Guadagnoli, E., & Ward, P. (1998). Patient participation in decision-making. Social Science and Medicine, 47, 329–339.
36.
Hack, T. F., Degner, L. F., & Dyck, D. G. (1994). Relationship between preferences for decisional control and illness information among women with breast cancer: A quantitative and qualitative analysis. Social Science and Medicine, 39, 279–289.
37.
Hall, J. A., Roter, D. L., & Katz, N. R. (1988). Meta-analysis of correlates of provider behavior in medical encounters. Medical Care, 26, 657–675.
38.
Johnson, J. D., Roberts, C. S., Cox, C. E., Reintgen, D. S., Levine, J. S., & Parsons, M. (1996). Breast cancer patients’ personality style, age, and treatment decision making. Journal of Surgical Oncology, 63, 183–186.
39.
Krantz, D. S., Baum, A., & Wideman. W. (1980). Assessment of preferences for self-treatment and information in health care. Journal of Personality and Social Psychology, 39, 977–990.
40.
LaPuma, J., Orentlichter, D., & Moss, J. (1991). Advance directives on admission. Clinical implications and analysis of the Patient Self-Determination Act of 1990. Journal of American Medical Association, 266, 402–405.
41.
Lazure, L. L., & Baun, M. M. (1995). Increasing patient control of family visiting in the coronary care unit. American Journal of Critical Care, 4, 157–164.
42.
Levine, M. N., Gafni, A., Markham, B., & MacFarlane, D. (1992). A bedside decision instrument to elicit a patient's preference concerning adjuvant chemotherapy for breast cancer. Annals of Internal Medicine, 117, 53–58.
43.
Lidz, C. W., Meisel, A.Osterweis, M., Holden, J. L., Marx, J. H., & Munetz, M. R. (1983). Barriers to informed consent. Annals of Internal Medicine, 99, 539–543.
44.
Liu, G., Franssen, E., Fitch, M. I., & Warner, E. (1997). Patient preferences for oral versus intravenous palliative chemotherapy. Journal of Clinical Oncology, 15, 110–115.
45.
Llewellyn-Thomas, H. A., McGreal, J., & Thiel, E. C. (1995). Cancer patients’ decision making and trialentry preferences: The effects of ‘framing’ information about short-term toxicity and long-term survival. Medical Decision Making, 15, 4–12.
46.
Ludwick-Rosenthal, R., & Neufeld, R. J. (1993). Preparation for undergoing an invasive medical procedure: Interacting effects of information and coping style. Journal of Consulting and Clinical Psychology, 61, 156–164.
47.
Mackillop, W. J., Stewart, W. E., Ginsburg, A. D., & Stewart, S. S. (1988). Cancer patients’ perceptions of their disease and its treatment. British Journal of Cancer, 58, 355–358.
48.
Martelli, M. F., Auerbach, S. M., Alexander, J., & Mercuri, L. G. (1987). Stress management in the health care setting: Matching interventions with patient coping styles. Journal of Consulting and Clinical Psychology, 55, 201–207.
49.
Mazur, D. J. & Hickam, D. H. (1997). Patients’ preferences for risk disclosure and role in decision making for invasive medical procedures. Journal of General Internal Medicine, 12, 114–117.
50.
Mellstrom, M., Cicala, G. A., & Zuckerman, M. (1976). General versus specific trait anxiety measures in the prediction of fear of snakes, heights, and darkness. Journal of Consulting and Clinical Psychology, 44, 83–91.
51.
Merz, J. F., & Fischoff, B. (1990). Informed consent does not mean rational consent: Cognitive limitations on decision making. Journal of Legal Medicine, 11, 321–350.
52.
Miller, S. M. (1980). Why having control reduces stress: If I can stop the roller coaster, I don’t want to get off. In J. Garber & Seligman, M. (Eds.), Human helplessness (pp. 71–95). New York: Academic Press.
53.
Miller, S. M. (1987). Monitoring and blunting: Validation of a questionnaire to assess styles of information seeking under threat. Journal of Personality and Social Psychology, 52, 345–353.
54.
Miller, S. M. (1995). Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease: Implications for cancer screening and management. Cancer, 76, 167–177.
55.
Miller, S. M., Brody, D. S., & Summerton, J. (1988). Styles of coping with threat: Implications for health. Journal of Personality and Social Psychology, 54, 142–148.
56.
Nease, R. F., & Brooks, W. B. (1995). Patient desire for information and decision making in health care decisions: The Autonomy Preference Index and the Health Opinion Survey. Journal of General Internal Medicine, 10, 593–600.
57.
O’Connor, A. M., Fiset, V., DeGrasse, C., Graham, I. D., Evans, W., Stacey D., Laupacis, A., & Tugwell P. (1999). Decisions aids for patients considering options affecting cancer outcomes: Evidence of efficacy and policy implications. Journal of the National Cancer Institute Monographs, 25, 67–80.
58.
O’Connor, A. M., Rostom, A., Fiset, V., Tetroe, J., Entwistle, V., Llewellyn-Thomas. H., Holmes-Rovner, M., Barry, M., & Jones, J. (1999). Decision aids for patients facing health treatment or screening decisions: Systematic review. British Medical Journal, 319, 731–734.
59.
Quill, T. E., & Brody, H. (1996). Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Annals of Internal Medicine, 125, 763–769.
60.
Reid, D. W. (1984). Participatory control and the chronic-illness adjustment process. In H. M. Lefcourt (Ed.), Research with the locus of control construct (vol. 3, pp. 361–389). New York: Academic Press.
61.
Reid, D. W., & Ziegler, M. (1981). The desired control measure and adjustment among the elderly. In H. M. Lefcourt (Ed.), Research with the locus of control construct: Assessment methods (vol. 1, pp. 127–157). New York: Academic Press.
62.
Richards, M. A., Ramirez, A. J., Degner, L. J., Fallow-field, L. J., Maher, E. J., & Neuberger, J. (1995). Offering choice of treatment to patients with cancers. European Journal of Cancer, 31A, 116–123.
63.
Sebban, C.Browman, G., Gafni, A., Norman, G., Levine, M., Assouline, D., & Fiere, D. (1995). Design and validation of a bedside decision instrument to elicit a patient's preference concerning allogenic bone marrow transplantation in chronic myeloid leukemia. American Journal of Hematology, 48, 221–227.
64.
Shapiro, D. E., Boggs, S. R., Melamed, B. G., & Graham-Pole, J. (1992). The affect of varied physician affect on recall, anxiety, and perceptions in women at risk for breast cancer: An analogue study. Health Psychology, 11, 61–66.
65.
Smith, R. A., Wallston, B. S., Wallston, K. A., Fors-berg, P. R., & King, J. (1984). Measuring desire for control of health care processes. Journal of Personality and Social Psychology,47, 415–426.
66.
Smith, R. A. P., Woodward, N. J., Wallston, B. S., Wall-ston, K. A., Rye, P., & Zylstra, M. (1988). Health care implications of desire and expectancy for control in elderly adults. Journal of Gerontology: Psychological Sciences, 43, P1–P7.
67.
Speedling, E. J., & Rose, D. N. (1985). Building an effective doctor–patient relationship: From patient satisfaction to patient participation. Social Science and Medicine, 21, 115–120.
68.
Strull, W. M., Lo, B., & Charles, G. (1984). Do patients want to participate in decision making?Journal of the American Medical Association, 252, 2990–2994.
69.
Suls, J., & Fletcher, B. (1985). The efficacy of avoidant and nonavoidant coping strategies: A meta-analysis. Health Psychology, 4, 249–288.
70.
Sutherland, H. J., Llewellyn-Thomas, H. A., Lockwood, G. A., & Tritchler, D. L. (1989). Cancer patients: Their desire for information and participation in treatment decisions. Journal of the Royal Society of Medicine, 82, 260–263.
71.
Taylor, N., Hall, G. M., & Salmon, P. (1996). Is patient-controlled anesthesia controlled by the patient?Social Science and Medicine, 43, 1137–1143.
72.
Thompson, S. C. (1981). Will it hurt less if I can control it? A complex answer to a simple question. Psychological Bulletin, 90, 89–101.
73.
Thompson, S. C., Pitts, J. S., & Schwankovsky, L. (1993). Preferences for involvement in medical decision making: Situational and demographic influences. Patient Education and Counseling, 22, 133–140.
74.
Turner, S. I., & Maher, E. J. (1994). Information and choice in decisions about cancer treatment. British Medical Journal, 305, 955-955.
75.
Ubel, P. A. (1996). Informed consent: From bodily invasion to the seemingly mundane (Editorial). Archives of Internal Medicine, 156, 1262–1263.
76.
von Friederichs-Fitzwater, M. M., Callahan, E. J., Flynn, N., & Williams, J. (1991). Relational control in physician–patient encounters. Health Communication, 3, 17–36.
77.
Wallston, B. S., Smith, R. A. P., Wallston, K. A., King, J. E., Rye, P. D., & Heim, C. R. (1987). Choice and predictability in the preparation for barium enemas: A person-by-situation approach. Research in Nursing and Health, 10, 13–22.
78.
Wallston, K. A., Smith, R. A., King, J. E., Forsberg, P. R., Wallston, B. S., & Nagy, V. T. (1983). Expectancies about control over health: Relationship to desire for control of health care. Personality and Social Psychology Bulletin, 9, 377–385.
79.
Wallston, K. A., Smith, R. A. P., King, J. E., Smith, M. S., Rye, P., & Burish, T. G. (1991). Desire for control and choice of antiemetic treatment for cancer chemotherapy. Western Journal of Nursing Research, 13, 12–29.
80.
Wallston, K. A., Wallston, B. S., Smith, M. S., & Dobbins, C. J. (1987). Perceived control and health. Current Psychology Research and Reviews, 6, 5–25.
81.
Whelan, T. J., Levine, M. N., Gafni, A., Lukka, H., Mohide, E. A., Patel, M., & Streiner, D. L. (1995). Breast irradiation postlumpectomy: Development and evaluation of a decision instrument. Journal of Clinical Oncology, 13, 847–853.
82.
White, R. W. (1959). Motivation reconsidered: The concept of competence. Psychological Review, 66, 297–323.
