Category: Spasticity
Objective: To design an ethnographic study following patients over a botulinum toxin type-A (BoNT-A) treatment cycle to inform individualized treatment.
Background: The concept of individualized patient care relies on good clinician understanding of patients’ lived experiences of treatment. The ethnographic approach allows multidimensional insights into the patient experience through comprehensive observation of participants in their real-life environment.
Method: The REBOT study (NCT03995524) is a prospective observational study conducted in France, Italy, UK and USA. Up to 40 eligible participants (approximately 10 per country), aged 18-75 years, will be recruited via patient support groups. Participants must be ambulatory, receiving regular BoNT-A treatment for post-stroke spasticity and must have completed ≥2 prior injection cycles. Informal caregivers of post-stroke patients with spasticity will also be followed. The study is conducted in 3 stages. In Stage 1, consenting participants undergo in-depth qualitative interviews to collect demographic, clinical information and overall perception of the disease history, burden and treatment. Stage 2 is a 16-week ethnography observation period using a dedicated smartphone application for collation of questionnaire data (containing the Patient-Reported Impact of Spasticity Measure [PRISM], EQ-5D-5L and WHODAS parameters), photographs, videos and audio material. Stage 3 is a further qualitative in-depth interview to assess treatment course satisfaction.
Results: The primary outcome is the degree of functional limitations in daily life activities (i.e. physical functioning) associated with post-stroke spasticity. Exploratory ethnographic data will be analyzed using a specific ethnography analysis tool based on PowerBI and will be presented descriptively. The study would also evaluate the repercussions of spasticity and treatment outcomes on carers’ lives.
Conclusion: To our knowledge, this is the first ethnographic study following participants with post-stroke spasticity treated with BoNT-A. This approach has been chosen to capture patients’ and carers’ experiences of a full BoNT-A treatment cycle, including the onset, peak, and trough of BoNT-A treatment effects.
To cite this abstract in AMA style:
J. Jacinto, A. Lysandropoulos, A. Fulford-Smith. Perceptions of burden of spasticity and treatment satisfaction among post-stroke patients over the course of a botulinum neurotoxin A (BoNT-A) treatment cycle: An ethnographic study [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/perceptions-of-burden-of-spasticity-and-treatment-satisfaction-among-post-stroke-patients-over-the-course-of-a-botulinum-neurotoxin-a-bont-a-treatment-cycle-an-ethnographic-study/. Accessed May 16, 2025.« Back to MDS Virtual Congress 2020
MDS Abstracts - https://www.mdsabstracts.org/abstract/perceptions-of-burden-of-spasticity-and-treatment-satisfaction-among-post-stroke-patients-over-the-course-of-a-botulinum-neurotoxin-a-bont-a-treatment-cycle-an-ethnographic-study/