Allogeneic stem cell transplantation for sickle cell disease. A study of patients' decisions

Allogeneic stem cell transplantation is increasingly considered as a curati ve though risky treatment option for adults with sickle cell disease. Littl e is known about attitudes of adult patients and their health care provider s regarding the risks and benefits of transplantation. A survey of 100 pati ents and their health care providers was undertaken. Assessment of risk was by a reference gamble paradigm. Comparison was made of the characteristics of those accepting substantial risk vs those not accepting risk, as well a s assessment of agreement on risks recommended by health care providers and accepted by patients. Sixty-three of 100 patients were willing to accept s ome short-term risk of mortality in exchange for the certainty of cure. Fif teen patients were willing to accept more than 35% mortality risk. No diffe rences in patient or disease-related variables were identified between thos e accepting risk and those not accepting risk. There was no agreement betwe en the recommendations of health care providers and the risk accepted by pa tients. A substantial proportion of adults with sickle cell disease are int erested in curative treatment, at the expense of considerable risk. The dec ision to accept risk is influenced by individual patient values that cannot be easily quantified and that do not correlate with the assessment of the health care provider. Given the substantial interest in curative therapy, e ducation about and consultation for allogeneic stem cell transplantation in sickle cell patients should be encouraged.