Objective: To pilot a multi-faceted evaluation framework for paediatric patients undergoing deep brain stimulation (DBS) in a single centre.

Background: DBS can be useful for selected childhood onset movement disorders. Classically, only motor severity scores are used to define DBS outcomes, potentially missing other important factors. Carer and patient expectations and satisfaction are not described in evaluation frameworks for paediatric DBS and may also form a useful part of evaluation.

Method: All patients undergoing DBS over a two year study period in a single tertiary centre in Sydney, Australia were invited to participate. They underwent structured measures [Table 1] before and after DBS at 6 and 12 months encompassing a recorded interview and questionnaires on patient and carer expectations and satisfaction, structured scores of motor and non-motor symptom severity, goal setting and achievement, and quality of life measures.

Results: 5 patients underwent DBS during the study period – 4 with monogenic associations and 1 idiopathic [Table 2]. All reported motor benefits post-DBS, however serial motor scores [Figure 1] showed a “clinically meaningful” improvement in only 2/5 patients. While changes in structured scores measuring non-motor symptoms showed improvements at 6 and 12 month follow up [Figure 2], carers and patients only reported clear improvements on questionnaires at 12 months follow up [Figure 3]. Thematic analysis of interviews revealed carers and patient’s priorities of addressing motor and non-motor symptoms, and the movement disorder’s impact on function, which were measured using structured assessments [Table 3]. Novel aspects that emerged from interviews included conflict between patient and carer hopes and expectations, use of DBS as a measure of last resort and the need to address psychosocial wellbeing.

Conclusion: This study provides insight into the value of a multi-faceted assessment framework for children undergoing DBS and can be extrapolated to many other interventions. It is important to acknowledge patient priorities and set collaborative goals for meaningful measurement of real-world outcomes that align with the World Health Organization’s International Classification of Functioning. Responses on patient reported outcome and experience measures may differ from structured scores, and reasons for these discrepancies need to be further studied.

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