Expect the unexpected: patients' and families' expectations and experiences of new clinical procedures

Background Early stage clinical innovation often occurs 'under the radar' of governance systems for established procedures. Previously impossible or unavailable techniques still being developed involve additional uncertainty and unknown risks and benefits compared with standard procedures. Patient and family expectations, perceptions and experiences of these new procedures and their possible impacts on aspects of patient safety are under-researched. Objective To explore patient and family expectations and experiences of undergoing new clinical procedures. Setting A large UK Hospital NHS Foundation Trust with a range of clinically innovative specialties. Methods We interviewed 15 patients who received new clinical procedures in a variety of medical and surgical specialties. Qualitative interviews were used to facilitate in-depth exploration of patient and family views and experiences. Topics included patient and family access to and expectations of the procedure, informed decision making regarding acceptance of new procedures and post-procedure experiences. Results Some patients sought out specific interventions, while others accepted new treatment options that clinicians proposed. Most participants reported that explanations about the procedure and risks were clear, and there were opportunities to ask questions prior to the procedure. Most participants also regarded their procedures as successful. However, post-procedure information follow-up was often reported as lacking and some outcomes were considerably problematic and raised patient safety issues. Discussion The importance of patients' and family views in evaluating health care are increasingly recognized. We discuss the implications of our findings for informed decision making and post-intervention follow-up.