Beecher HK. Ethics and clinical research. N Engl J Med. 1966;274:1354–60.
CAS
Article
PubMed
Google Scholar
D’Souza A, Pasquini M, Spellecy R. Is ‘informed consent’ an ‘understood consent’ in hematopoietic cell transplantation? Bone Marrow Transplant. 2015;50:10–4. A comprehensive review of the key literature and research around informed consent for hematopoietic stem cell transplant.
Article
PubMed
PubMed Central
Google Scholar
Rosenbaum L. The paternalism preference—choosing unshared decision making. N Engl J Med. 2014;373:7.
Google Scholar
Boland F. The first anesthetic: the story of Crawford Long. Athens: University Georgia Press; 2009.
www.cancer.org. Accessed on 13 Oct 2015.
Watson K. Reframing regret. JAMA. 2014;311(1):27–9. A descriptive piece defining decisional regret and situational regret.
CAS
Article
PubMed
Google Scholar
Sorror ML, Maris MB, Storb R, et al. Hematopoietic cell transplantation (HCT)-specific comorbidity index: a new tool for risk assessment before allogeneic HCT. Blood. 2005;106(8):2912–9.
CAS
Article
PubMed
PubMed Central
Google Scholar
Parimon T, Au DH, Martin PJ, et al. A risk score for mortality after allogeneic hematopoietic cell transplantation. Ann Intern Med. 2006;144(6):407–14.
Article
PubMed
Google Scholar
Servias S, Porcher R, Xhaard A, et al. Pre-transplant prognostic factors of long-term survival after allogeneic peripheral blood stem cell transplantation with matched related/unrelated donors. Haematologica. 2014;99:519–26.
Article
Google Scholar
Gratwohl A, Hermans J, Goldman JM, et al. Risk assessment for patients with chronic myeloid leukaemia before allogeneic blood or marrow transplantation. Chronic Leukemia Working Party of the European Group for Blood and Marrow Transplantation. Lancet. 1998;352:1087–92.
CAS
Article
PubMed
Google Scholar
Peters E, Hibbard J, Slovic P, Dieckmann N. Numeracy skill and the communication, comprehension, and use of risk-benefit information. Health Aff (Project Hope). 2007;26:741–8.
Article
Google Scholar
Lipkus IM, Samsa G, Rimer BK. General performance on a numeracy scale among highly educated samples. Med Decis Mak: Int J Soc Med Decis Mak. 2001;21:37–44.
CAS
Article
Google Scholar
Lee SJ, Fairclough D, Antin JH, Weeks JC. Discrepancies between patient and physician estimates for the success of stem cell transplantation. JAMA. 2001;285:1034–8.
CAS
Article
PubMed
Google Scholar
Grulke N, Bailer H. Facing haematopoietic stem-cell transplantation: do patients and their physicians agree regarding the prognosis? Psycho-Oncology. 2010;19:1035–43.
Article
PubMed
Google Scholar
Schwarze ML, Redmann AJ, Alexander GC, et al. Surgeons expect patients to buy-in to postoperative life support preoperatively: results of a national survey. Crit Care Med. 2013;41(1):1–8.
Article
PubMed
PubMed Central
Google Scholar
Jacoby LH, Baloy B, Cirenza E, et al. The basis of informed consent for BMT patients. Bone Marrow Transplant. 1999;23:711–7.
CAS
Article
PubMed
Google Scholar
Kahneman D. Thinking, fast and slow. New York: Farrar, Straus and Giroux; 2011.
Google Scholar
Thaler, Sunstein. Nudge, improving decisions about health, wealth, and happiness. New Haven: Yale University Press; 2008. p. 293.
Google Scholar
Kahneman D, Tversky A. Prospect theory: an analysis of decision under risk. Econometrica. 1979;47(2):263–91.
Article
Google Scholar
McNeil BJ, Pauker SG, Sox Jr HC, Tversky A. On the elicitation of preferences for alternative therapies. N Engl J Med. 1982;306:1259–62.
CAS
Article
PubMed
Google Scholar
National Research Council. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press; 2001.
Google Scholar
Pidala J, Craig BM, Lee SJ, Majhail N, Quinn G, Anasetti C. Practice variation in physician referral for allogeneic hematopoietic cell transplantation. Bone Marrow Transplant. 2013;48:63–7.
CAS
Article
PubMed
PubMed Central
Google Scholar
Smith AR, Warlick ED, Roesler MA, et al. Factors associated with hematopoietic cell transplantation (HCT) among patients in a population-based study of myelodysplastic syndrome (MDS) in Minnesota. Ann Hematol. 2015;94:1667–75.
CAS
Article
PubMed
Google Scholar
Forsyth R, Scanlan C, Carter SM, Jordens CF, Kerridge I. Decision making in a crowded room: the relational significance of social roles in decisions to proceed with allogeneic stem cell transplantation. Qual Health Res. 2011;21:1260–72.
Article
PubMed
Google Scholar
Payne JW, Bettman JR. Behavioral decision research: a constructive processing perspective. Annu Rev Psychol. 1992;43:87–131.
Article
Google Scholar
Halpern SD, Loewenstein G, Volpp K, et al. Default options in advance directives influence how patients set goals for end-of-life care. Health Aff. 2013;32(2):408–17. A randomized study of advance directives with different default options, given to seriously ill patients, demonstrated the absence of deeply-held beliefs when it was seen that the ‘pre-checked’ default option strongly influenced patients’ choices regarding end of life ‘aggressiveness’ of care.
Article
Google Scholar