Implementing a patient decision aid about selective dorsal rhizotomy in clinical practice: pre-post pilot study

PURPOSE: To evaluate whether implementing a patient decision aid about Selective Dorsal Rhizotomy (SDR) for carers of children with bilateral spastic cerebral palsy (CP) improves carer decision-making outcomes and is acceptable to healthcare providers, and to explore carers' experience of using it. MATERIALS AND METHODS: This pilot study recruited 24 carers and 19 healthcare providers from four Australian tertiary paediatric hospitals. In Stage 1, carers completed a survey capturing knowledge, decision self-efficacy and decisional conflict prior to (baseline) and after reading the decision aid (post 1), and after their child's clinic appointment (post 2). Healthcare providers completed an acceptability survey, and post-clinic checklist to evaluate usefulness in clinic. Stage 2 comprised semi-structured interviews with 7 carers exploring experience using the decision aid. Healthcare providers found the decision aid acceptable. Interviews with carers identified four themes: 1) Building Decision-Readiness; 2) Achieving Individual Fit; 3) Navigating the Information Experience; and 4) Managing Emotions and Seeking Reassurance. CONCLUSIONS: Implementation of a SDR Decision Aid was associated with improvements in carer knowledge, decision self-efficacy, and decisional conflict, and was acceptable to healthcare providers and carers.