Research Article| Volume 1, ISSUE 2, P66-72, October 2010

Information needs, decisional regret and satisfaction of older and younger adults with acute myeloid leukemia



      Patients diagnosed with acute myeloid leukemia (AML) can often feel overwhelmed at having to make a difficult and time-sensitive treatment decision in this life-threatening illnes. We sought to explore information needs, control preferences, decisional regret, and decisional satisfaction in adult patients with AML and to explore differences by age group.


      We recruited 35 consecutive English-speaking patients with recently diagnosed AML, evenly split between older ( age 60+, n=17) and younger (n=18) adults. We administered questionnaires including the satisfaction with decision making scale, decisional regret scale, control preferences scale, and quality of life questions at one or two key time points: start of chemotherapy, end of induction chemotherapy, and end of intensive chemotherapy.


      52% of patients preferred a passive decision-making role. Most patients (80%) achieved their preferred decision-making role. Overall decisional satisfaction scores were high and regret scores were low, but there was a trend toward less satisfaction with more passive decision-making roles (p=0.066). Most patients had a high level of trust in their physician. Physicians and nurses were reported as the most useful sources of information. There were no significant differences in any of these outcomes by age group. Quality of life and fatigue were also similar among older and younger patients.


      These findings demonstrate similarities in information and decisional issues in older and younger adults with AML and highlight the need for further study of decisional regret and satisfaction over time in this patient population.


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        • Derolf A.R.
        • Kristinsson S.Y.
        • Andersson T.M.
        • Landgren O.
        • Dickman P.W.
        • Bjorkholm M.
        Improved patient survival for acute myeloid leukemia: a population-based study of 9729 patients diagnosed in Sweden between 1973 and 2005.
        Blood. 2009; 113: 3666-3672
        • Alibhai S.M.
        • Leach M.
        • Minden M.D.
        • Brandwein J.
        Outcomes and quality of care over 4 decades for patients with acute myeloid leukemia.
        Cancer. 2009; 115: 2903-2911
        • Burnett A.K.
        • Milligan D.
        • Prentice A.G.
        • Goldstone A.H.
        • McMullin M.F.
        • Hills R.K.
        • et al.
        A comparison of low-dose cytarabine and hydroxyurea with or without all-trans retinoic acid for acute myeloid leukemia and high-risk myelodysplastic syndrome in patients not considered fit for intensive treatment.
        Cancer. 2007; 109: 1114-1124
        • Alibhai S.M.H.
        • Leach M.
        • Kermalli H.
        • Gupta V.
        • Kowgier M.E.
        • Tomlinson G.A.
        • et al.
        The impact of acute myeloid leukemia and its treatment on quality of life and functional status in older adults.
        Crit Rev Oncol Hematol. 2007; 64: 19-30
        • Sekeres M.A.
        • Stone R.M.
        • Zahrieh D.
        • Neuberg D.
        • Morrison V.
        • De Angelo D.J.
        • et al.
        Decision-making and quality of life in older adults with acute myeloid leukemia or advanced myelodysplastic syndrome.
        Leukemia. 2004; 18: 809-816
        • Yogaparan T.
        • Panju A.
        • Minden M.
        • Brandwein J.
        • Mohamedali H.Z.
        • Alibhai S.M.
        Information needs of adult patients 50 or older with newly diagnosed acute myeloid leukemia.
        Leuk Res. 2009; 33: 1288-1290
        • Bruera E.
        • Kuehn N.
        • Miller M.J.
        • Selmser P.
        • Macmillan K.
        The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients.
        J Palliat Care. 1991; 7: 6-9
        • Aaronson N.K.
        • Ahmedzai S.
        • Bergman B.
        • Bullinger M.
        • Cull A.
        • Duez N.J.
        • et al.
        The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology.
        J Natl Cancer Inst. 1993; 85: 365-376
        • Degner L.F.
        • Sloan J.A.
        • Venkatesh P.
        The control preferences scale.
        Can J Nurs Res. 1997; 29: 21-43
        • Brehaut J.C.
        • O'Connor A.M.
        • Wood T.J.
        • Hack T.F.
        • Siminoff L.
        • Gordon E.
        • et al.
        Validation of a decision regret scale.
        Med Decis Mak. 2003; 23: 281-292
        • Holmes-Rovner M.
        • Kroll J.
        • Schmitt N.
        • Rovner D.R.
        • Breer M.L.
        • Rothert M.L.
        • et al.
        Patient satisfaction with health care decisions: the satisfaction with decision scale.
        Med Decis Mak. 1996; 16: 58-64
        • Beck A.T.
        • Ward C.H.
        • Mendelson M.
        • Mock J.
        • Erbaugh J.
        An inventory for measuring depression.
        Arch Gen Psychiatry. 1961; 4: 561-571
        • Lantz P.M.
        • Janz N.K.
        • Fagerlin A.
        • Schwartz K.
        • Liu L.
        • Lakhani I.
        • et al.
        Satisfaction with surgery outcomes and the decision process in a population-based sample of women with breast cancer.
        Health Serv Res. 2005; 40: 745-767
        • Waljee J.F.
        • Hu E.S.
        • Newman L.A.
        • Alderman A.K.
        Correlates of patient satisfaction and provider trust after breast-conserving surgery.
        Cancer. 2008; 112: 1679-1687
        • Parhiscar A.
        • Rosenfeld R.M.
        Can patient satisfaction with decisions predict compliance with surgery?.
        Otolaryngol Head Neck Surg. 2002; 126: 365-370
        • Svenson O.
        Differentiation and consolidation theory of human decision making: a frame of reference for the study of pre- and post-decision processes.
        Acta Psychol. 1992; 80: 143-168
        • Jansen S.J.
        • Otten W.
        • Stiggelbout A.M.
        Review of determinants of patients' preferences for adjuvant therapy in cancer.
        J Clin Oncol. 2004; 22: 3181-3190
        • Monfardini S.
        What do we know on variables influencing clinical decision-making in elderly cancer patients?.
        Eur J Cancer. 1996; 32A: 12-14
        • Giacalone A.
        • Blandino M.
        • Talamini R.
        • Bortolus R.
        • Spazzapan S.
        • Valentini M.
        • et al.
        What elderly cancer patients want to know? Differences among elderly and young patients.
        Psychooncology. 2007; 16: 365-370
        • Jansen J.
        • Butow P.N.
        • van Weert J.C.
        • van Dulmen S.
        • Devine R.J.
        • Heeren T.J.
        • et al.
        Does age really matter? Recall of information presented to newly referred patients with cancer.
        J Clin Oncol. 2008; 26: 5450-5457
        • Degner L.F.
        • Sloan J.A.
        Decision making during serious illness: what role do patients really want to play?.
        J Clin Epidemiol. 1992; 45: 941-950
        • Elkin E.B.
        • Kim S.H.
        • Casper E.S.
        • Kissane D.W.
        • Schrag D.
        Desire for information and involvement in treatment decisions: elderly cancer patients' preferences and their physicians' perceptions.
        J Clin Oncol. 2007; 25: 5275-5280
        • Degner L.F.
        • Kristjanson L.J.
        • Bowman D.
        • Sloan J.A.
        • Carriere K.C.
        • O'Neil J.
        • et al.
        Information needs and decisional preferences in women with breast cancer.
        Jama. 1997; 277: 1485-1492


      Hassanabbas Mohamedali is a second-year Undergraduate Pharmacy student at the University of Toronto. He is interested in clinical research involving drug toxicity in patients with and without cancer.


      Ms. Henriette Breunis is a Research Coordinator working with Dr. Shabbir Alibhai on several research studies in prostate cancer and acute myeloid leukaemia. In addition, she works occasionally as a monitor for the National Cancer Institute of Canada Clinical Trials Group’s Audit and Monitoring Committee. Henriette holds a degree in library science and is a certified clinical research professional.


      Mr. Abbas Panju participated in this study while an undergraduate student in arts and science. He is currently pursuing a Master’s degree in Business Administration at McMaster University in Hamilton, Ontario, Canada and is interested in studying medicine.


      Shabbir M.H. Alibhai, MD, MSc is an Assistant Professor in the Departments of Medicine and Health Policy, Management, and Evaluation at the University of Toronto. He is a staff physician and researcher at the University Health Network and Toronto Rehabilitation Institute, and a Research Scientist of the Canadian Cancer Society. His research interests are in geriatric oncology, particularly in understanding treatment-related toxicities, enhancing treatment decision making, and improving quality of life, fatigue, and function in older people with prostate cancer and acute leukemia.