Patients’ and healthcare professionals’ views on pharmacogenetic testing and its future delivery in the NHS

Abstract

Introduction: There is limited empirical evidence on patients’ and healthcare professionals’ views on the provision of pharmacogenetic testing services. These opinions may be used to shape the development of emerging pharmacogenetic services and inform healthcare professionals’ future educational requirements. Objectives: To explore patients’ and healthcare professionals’ views about pharmacogenetic testing services and their future development. Methods: Semi-structured interviews were conducted with patients who had been prescribed azathioprine for autoimmune conditions and prevention of acute rejection in renal transplantation. Focus groups were conducted with a range of healthcare professionals. Interviews and focus groups were recorded and transcribed verbatim. Data were analyzed using the constant comparative method. Results: The views of 42 individuals – 25 patients and 17 healthcare professionals – were explored in depth. Key themes emerging from the data were: patients’ and healthcare professionals’ knowledge and experience of pharmacogenetics; expectations about how such a testing service could be used; and characteristics of service delivery. Knowledge and experience of pharmacogenetics varied. Pharmacogenetics was perceived to be of benefit by both groups. Patients gave opinions about pharmacogenetic services based on their experiences of illness, taking medicines and using healthcare services. Healthcare professionals based their opinions on how existing services are provided and access to limited healthcare resources. Patients had strong feelings about how this service should be delivered and expected high standards of explanation about potential pharmacogenetic tests. None of the healthcare professionals questioned expected to have responsibility for the future delivery of pharmacogenetic testing services. Conclusion: There is no clear model of how pharmacogenetic tests will be delivered in clinical practice. Patients expect to receive pharmacogenetic services from healthcare professionals who are able to explain the test, and interpret the implications for prescribing, with confidence. The gap between patients’ high expectations for information and healthcare professionals’ current knowledge and reluctance to deliver pharmacogenetic services highlights the urgent need for better education and training of healthcare professionals in pharmacogenetics.