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Aim: This study measures the outcomes of surgery for neuromuscular scoliosis using patient/ carer goal setting techniques.

Method and Results: In neuromuscular scoliosis, the objective of surgery is to maintain or improve sitting ability and to improve overall function. Measuring the outcome of surgery by patient/carer grading of patient/ carer set goals has not been used in this patient group.

A group of 20 children who underwent spinal fusion for neuromuscular scoliosis were assessed using a postural and functional measure pre-op, post-op, and at 3 and 12 months post-op. In addition, each patient was asked to record three goals for undergoing the surgery. At one year post op, patient/carers were asked to grade on a scale of 0 – 10, how satisfied they were that the goals had been achieved.

Nineteen patients had clear pre-op goals for the surgery relating to functional activities. The most frequent goals stated for the non-ambulant children were- sitting for longer periods (7/46), making dressing easier (7/46) and sitting more upright (6/38). There were 15 other functional goals stated. The ambulant children stated- appearing straighter (3/12), increase in confidence (2/12), reducing pain (2/12) and maintaining respiratory function (2/12). There were 3 other functional goals stated. Seventeen patients completed the study, 2 were lost to follow up, 1 died. The average satisfaction rate from goals achieved 1 year post-op was 7.9/10.

Conclusion: Establishing goals that are realistic and contribute positively to the functional ability or practical management of the child with neuromuscular scoliosis undergoing spinal surgery, encourages the family to be central in the decision making process. It also allows unrealistic expectations to be discussed pre-op and represents the most patient centred method of outcome assessment.

Correspondence should be addressed to: Sue Woodward, Secreteriat, Britspine, Vale Clinic, Hensol Park, Vale of Glamorgan, CF72 8JY Wales.