To gain patient input on how to improve the execution of a longitudinal observational study of leg spasticity.

It is increasingly accepted that people living with long-term conditions should be involved in the design, conduct and dissemination of research that affects them.

A one-day structured workshop was conducted with a small focus group of patients with leg spasticity. The day was split into presentations and discussions about the study design, the process of goal setting in spasticity, and an open feedback session.

Key learnings were that the clinical research process can be confusing for patients who do not clearly understand medical terminology. For example, when reviewing the informed consent process, patients emphasised the need for clear, jargonless explanations of the study objective to enable participation. The AboLiSh study aims to assess the longitudinal attainment of person-centred and function-related goals following repeat treatment cycles with abobotulinumtoxinA for spasticity management. Patient feedback was that, for optimal engagement with the process, they require training on appropriate goal setting, and that this could be delivered by a well-designed leaflet they can read in advance of their visit. Finally, patients noted that they can feel undervalued when not kept informed of study results.

Following the patient workshops, a goal-setting leaflet has been produced to aid patient and caregiver understanding of the process. Patients will receive regular updates by newsletter (digital and paper), and will be invited to review the results once the study completes.