In this ethnographic study we investigated changes in symptom burden and their effects/interference on patient functioning and quality of life throughout the duration of a botulinum toxin type A (BoNT-A) treatment cycle.

While BoNT-A is an acknowledged treatment for spasticity, many patients experience recurrence of symptoms before their next injection. However, there is a paucity of data on patients’ and caregivers’ perspective on the ‘rollercoaster’ of symptoms and its impact on their QoL.

The REBOT study (NCT03995524) was a prospective observational study conducted in 30 eligible stroke survivors who were ambulatory, receiving regular BoNT-A treatment (≥2 prior injection cycles). Informal caregivers of post-stroke patients with spasticity were also followed. The study comprised 3 stages: (1) In-depth qualitative interviews (2) 16-week ethnography observation period using a dedicated smartphone application for collation of questionnaire data (3) a further qualitative in-depth interview to assess treatment course satisfaction.

A total of 30 patients (21 F/9 M; mean age 48.7y) with varying severity and patterns of impairment were followed over the course of a BoNT-A cycle. Patients rated stiffness as their worst symptom/impairment, and this clearly improved with treatment and then started to return to near baseline levels at around 9-11 weeks post-injection. By contrast, responders reported little impact of treatment on aspects such as enjoyment of activities. Qualitative analysis of patients’ answers indicated that they were generally satisfied with BoNT-A treatment but wished for better symptom coverage over their treatment cycle.

A recent patient survey (Jacinto J et al. Front Neurol. 2020;11:388) suggested a ‘rollercoaster’ of symptomology and functional impact within a single injection cycle and these ethnographic data provide novel insights into the impact of these fluctuations on patient lives.