Preferences for involvement in treatment decision making of patients with cancer: a review of the literature.

A systematic review of the literature about patients' preferences for involvement in cancer treatment decision making was conducted. Establishing preferences is important if the aim is to make health care more sensitive to the needs and expectations of each individual patient. Thirty-one papers were included in the review. Generalising from this literature is problematic because of limitations related to sample size, sample composition and methods used to assess preferences. Whilst we take cognizance of these limitations, research suggests that preferences vary considerably and that whilst most patients prefer a collaborative role, a significant minority prefer a passive or active role. Evidence about the association of factors such as age, gender, level of education, marital status, socio-economic status and health status with preferences is inconclusive. Only a handful of studies investigated the degree of congruence between patients' role preferences and the actual role that they perceived they had played, which highlight that some patients experience a dissonance between the two. Similarly, few studies investigated the impact of this dissonance on patient anxiety or satisfaction with the treatment decision. We advocate more rigorous investigations before recommendations for health care professionals can be processed with confidence.

[1]  Bilodeau Ba,et al.  Information needs, sources of information, and decisional roles in women with breast cancer. , 1996 .

[2]  P. Butow,et al.  The dynamics of change: cancer patients' preferences for information, involvement and support. , 1997, Annals of oncology : official journal of the European Society for Medical Oncology.

[3]  P. Butow,et al.  Women’s preferences for discussion of prognosis in early breast cancer , 2001, Health Expectations.

[4]  V. Mor,et al.  The treatment decision-making process: age differences in a sample of women recently diagnosed with nonrecurrent, early-stage breast cancer. , 1997, The Gerontologist.

[5]  S. Goldenberg,et al.  Patients’ preferences for communicating a prostate cancer diagnosis and participating in medical decision‐making , 2004, BJU international.

[6]  D. Reintgen,et al.  Breast cancer patients' personality style, age, and treatment decision making , 1996, Journal of surgical oncology.

[7]  V. Entwistle The potential contribution of decision aids to screening programmes , 2001, Health expectations : an international journal of public participation in health care and health policy.

[8]  A. Gafni,et al.  The seriously ill hospitalized patient: preferred role in end-of-life decision making? , 2003, Journal of critical care.

[9]  P. Hinds,et al.  An international feasibility study of parental decision making in pediatric oncology. , 2000, Oncology nursing forum.

[10]  B. Cassileth,et al.  Information and participation preferences among cancer patients. , 1980, Annals of internal medicine.

[11]  A. Henderson,et al.  Nature of decision-making in the terminally ill patient. , 1996, Cancer nursing.

[12]  S. Quine,et al.  Information, support, and decision-making needs and preferences of adolescents with cancer: Implications for health professionals. , 1996 .

[13]  L. Degner,et al.  Relationship between preferences for decisional control and illness information among women with breast cancer: a quantitative and qualitative analysis. , 1994, Social science & medicine.

[14]  D. Rothenbacher,et al.  Treatment decisions in palliative cancer care: patients' preferences for involvement and doctors' knowledge about it. , 1997, European journal of cancer.

[15]  J. Sloan,et al.  Treatment decision making in women newly diagnosed with breast cancer. , 1996, Cancer nursing.

[16]  J. Lowery,et al.  Patient-physician concordance: preferences, perceptions, and factors influencing the breast cancer surgical decision. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[17]  D Feldman-Stewart,et al.  Lung cancer treatment decisions: patients’ desires for participation and information , 1999, Psycho-oncology.

[18]  P. Butow,et al.  What Do Patients Want? , 2003, Diseases of the colon and rectum.

[19]  L. Degner,et al.  Preferences for Participation in Treatment Decision Making and Information Needs of Parents of Children With Cancer: A Pilot Study , 1998, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.

[20]  R. Schwartz,et al.  Relationship of Depression and Anxiety to Cancer Patients' Medical Decision-Making , 2003, Psychological reports.

[21]  S Larry Goldenberg,et al.  Assessing Information and Decision Preferences of Men With Prostate Cancer and Their Partners , 2002, Cancer nursing.

[22]  L. Degner,et al.  Information needs and preferences for participation in treatment decisions among Swedish breast cancer patients. , 2000, Acta oncologica.

[23]  Eduardo Bruera,et al.  Treatment decisions for breast carcinoma , 2002, Cancer.

[24]  D. Stewart,et al.  Men with prostate cancer: influence of psychological factors on informational needs and decision making. , 2000, Journal of psychosomatic research.

[25]  E. Bruera,et al.  Patient preferences versus physician perceptions of treatment decisions in cancer care. , 2001, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[26]  B. Davison,et al.  Decisional regret and quality of life after participating in medical decision‐making for early‐stage prostate cancer , 2003, BJU international.

[27]  A. Beisecker,et al.  Attitudes of oncologists, oncology nurses, and patients from a women's clinic regarding medical decision making for older and younger breast cancer patients. , 1994, The Gerontologist.

[28]  Nancy Kraetschmer,et al.  How does trust affect patient preferences for participation in decision‐making? , 2004, Health expectations : an international journal of public participation in health care and health policy.

[29]  C. Recklitis,et al.  Parents' decision‐making preferences in pediatric oncology: The relationship to health care involvement and complementary therapy use , 2003, Psycho-oncology.

[30]  D. Bowen,et al.  Involvement in decision-making and breast cancer survivor quality of life. , 2009, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[31]  R. Salole A role for the sick role. , 1997, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[32]  K C Carriere,et al.  Information needs and decisional preferences in women with breast cancer. , 1997, JAMA.

[33]  M. Brundage,et al.  Cancer patients' attitudes toward treatment options for advanced non-small cell lung cancer: implications for patient education and decision support. , 2001, Patient education and counseling.

[34]  N. Kearney,et al.  A review of literature about involving people affected by cancer in research, policy and planning and practice. , 2007, Patient education and counseling.

[35]  Mary Beth Landrum,et al.  Treatment decision making in early-stage breast cancer: should surgeons match patients' desired level of involvement? , 2002, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[36]  S. Barni,et al.  Effects of media information on cancer patients' opinions, feelings, decision‐making process and physician‐patient communication , 2004, Cancer.

[37]  K. Luker,et al.  Decision‐making role preferences and information needs: a comparison of colorectal and breast cancer , 1999, Health expectations : an international journal of public participation in health care and health policy.

[38]  Degner Lf,et al.  Information and decision-making preferences of men with prostate cancer. , 1995 .

[39]  H. D. de Haes,et al.  Patient centered decision making in palliative cancer treatment: a world of paradoxes. , 2003, Patient education and counseling.

[40]  E. Guadagnoli,et al.  Patient participation in decision-making. , 1998, Social science & medicine.

[41]  G M Kiebert,et al.  A role for the sick role. Patient preferences regarding information and participation in clinical decision-making. , 1997, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[42]  P. Butow,et al.  Sharing decisions in cancer care. , 2001, Social science & medicine.

[43]  J. Sloan,et al.  Decision making during serious illness: what role do patients really want to play? , 1992, Journal of clinical epidemiology.

[44]  T R Morgan,et al.  Information and decision-making preferences of men with prostate cancer. , 1995, Oncology nursing forum.

[45]  U. Boehmer,et al.  Married couples' perspectives on prostate cancer diagnosis and treatment decision‐making , 2001, Psycho-oncology.