Making Reasonable Decisions - A qualitative study and quantitative health needs assessment evaluating the integration of published evidence and practice variation in the care of patients with thalassaemia and sickle cell disease in NSW, Australia.

Abstract

Doctors and patients make decisions together every day in an attempt to improve health outcomes in patients. We aimed to investigate such decisions, outcomes and the processes undertaken in decision making in patients living with a clinically significant haemoglobin disorder as well as other haematological illnesses. Initially a quantitative health needs assessment was undertaken in NSW, Australia examining the health and management of patients with haemoglobin disorders utilising patient reported outcomes. This assessment noted significant practice variation. A qualitative, interview based study of haematologists is then reported examining how treatments were selected or implemented. This study examined the integration of published evidence into such processes. Evidence based medicine is then examined from the perspective of illness definition in haematological malignancy and the increasing approach to targeted therapies resulting in highly individualised treatment approaches. Medical decision making (MDM) as a social process is then discussed with reference to individual clinician differences in risk epistemology, unit culture and self-referential behaviours. It is proposed that if MDM is examined from such a perspective practice variation is not only inevitable but in some cases preferable.