Objectives Guidance is currently lacking in the UK regarding which children and young people (CAYP) should be referred for consideration for neurosurgical interventions in the management of posture and tone (NIMPTs). We aimed to establish a consensus among centres providing these interventions (namely intrathecal baclofen (ITB), deep brain stimulation (DBS) and selective dorsal rhizotomy (SDR)) as to which CAYP should be referred for consideration of these interventions. Method Centres in the UK offering NIMPTs were identified and contacted. Suggestions for referral criteria were requested from staff with experience in the assessment/delivery of NIMPTs and formed the basis of a Delphi process. Purposeful sampling was used at all times, ensuring representative sampling in terms of centre geography, professional group and experience with each NIMPT. Results A total of 36 professionals from 14 centres provided 402 suggestions for referral criteria, generating 34 statements for the Delphi process (15 general suggestions, 8 relating to DBS, 8 to ITB and 3 to SDR). The first round of the Delphi received 50 responses, with 24 statements reaching the threshold for approval. A total of 42 responses were received in the second round of the Delphi process, with agreement reached on a further 10 statements. Conclusion We present the first national guidance for referral of CAYP for consideration of NIMPTs, generated through a transparent representative consensus process. Future work is required to disseminate these recommendations and ensure an equity of access to NIMPTs for CAYP across the UK.
Lumsden et al. (Wed,) studied this question.