Patient, parental and multi-disciplinary team rationale for non-implantation following the paediatric cochlear implantation assessment

Objectives To assess paediatric patients referred to the cochlear implant team, who despite undergoing the assessment, did not receive cochlear implantation. To identify the underlying reasons for this. Methods A retrospective case-note review of patients was assessed from June 2014 to June 2019 at two separate London teaching hospitals with paediatric cochlear implantation programmes. Results A total of 921 paediatric patients were assessed during the study period across both institutions. And, 196 (21%) did not proceed with the surgery. The decision not to undergo surgery was primarily parental/patient-directed in 114 (61%) and cochlear implant team-directed in 74 (39%). In total, eight (4%) patients exited the programme without a documented reason. Discussion A myriad of factors influenced the decision-making process for clinicians, patients and parents. The most cited parental/patient rationale against implantation was the wish to continue current means of communication 40 (35%), followed by concern regarding the risks of surgery 18 (15.8%) and the wish to allow the patient to make future decisions independently in view of the future technology 7 (6.1%). Cochlear implant team-directed decisions were largely due to being outside of the NICE criteria 27 (36.5%) or the risks of general anaesthesia 19 (25.7%) in addition to communication concerns 11 (14.9%). Conclusion Decision-making in cochlear implantation should not be underestimated. Extensive discussion and exploration of options with the multi-disciplinary team can aid decision-making, but the timescale and appreciation of the consequences of the decision inevitably lead to pressure. Exploration of reasons for non-implantation emphasises the importance of a multi-professional approach to manage these patients.