An RCT of a Patient-initiated Treatment Service for BEB and HFS
Blepharospasm, Hemi Facial Spasm
About this trial
This is an interventional health services research trial for Blepharospasm focused on measuring Patient-led care, Botulinum toxin, Dystonia, Randomised controlled trial, Acceptability
Eligibility Criteria
Inclusion Criteria:
- Diagnosis of hemifacial spasm or blepharospasm
- Attending a hospital-based botulinum toxin clinic at Moorfields Eye Hospital NHS Foundation Trust.
- Patients stable on botulinum toxin treatment, defined as receiving toxin treatment at stable doses over two previous cycles and free from and side effects.
- Aged 18 years old and over.
- Capacity to give informed consent to participate in the study, judged by the Research Nurse.
Exclusion Criteria:
- Participants with significant co-morbidities (i.e. their predominant treatment is for another illness).
- Inability to communicate fluently in written and/or spoken English, to complete study measures.
Sites / Locations
- Moorfields Eye Hospital NHS Foundation Trust
Arms of the Study
Arm 1
Arm 2
Experimental
No Intervention
Intervention
Control
Participants randomized to the intervention group (patient-initiated treatment) will be asked to initiate their own treatment during the nine months they are taking part in the trial. Intervention group participants will receive information about when and how to initiate an appointment. Contact details for the service will be provided along with information on how quickly an appointment will be made, with whom and the procedure in the case of an emergency. All patients requesting an appointment will be booked in to the next available slot within the twice weekly ring-fenced nurse-led clinics. Any subsequent scheduled appointments will be cancelled and all future treatment will be initiated by the patient.
Participants in the control group will receive treatment as usual. This consists of scheduled appointments in the hospital-based nurse-led botulinum toxin clinic. The frequency with which these appointments takes place are based on clinical judgement, but tend to range between every 6 weeks to every 4 months.