Disclosures: Jorge Jacinto, MD: No financial relationships or conflicts of interest
Objective: To design an ethnographical study following patients over a botulinum toxin type-A (BoNT-A) treatment cycle to inform individualized treatment.
Design: Ongoing prospective observational study. 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. Setting : Participants from France, Italy, UK and USA are followed in their home setting. Participants : Up to 40 eligible participants, 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.
Interventions: Not applicable
Main Outcome Measures: 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.
Results: Recruitment began July 20 2019 and the study is expected to complete in 2020. Conclusions: 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.
Level of Evidence: Level IV
To cite this abstract in AMA style:
Jacinto J, Lysandropoulos A, Smith AF. 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]. PM R. 2020; 12(S1)(suppl 1). https://pmrjabstracts.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 8, 2025.« Back to AAPM&R Annual Assembly 2020
PM&R Meeting Abstracts - https://pmrjabstracts.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/