Co-Production of a Digital Symptom Self-Management Resource for Patients With Functional Neurological Disorder

Abstract

AimsPatients with Functional Neurological Disorder (FND) experience neurological symptoms which may impair motor control, sensory function, or awareness. Long waiting lists before treatment mean the risk of relapse during this period is high. A lack of knowledge around FND also results in a lower quality of life. Therefore, it is important patients with FND receive appropriate psychoeducation to empower them to understand and manage their symptoms. We aimed to strengthen our symptom self-management booklet for patients in a community neuropsychiatry setting, using a co-production model and taking forward improvements into a digital audiovisual format.MethodsWe used co-production as part of a quality improvement project (QIP) at East Kent Neuropsychiatry Service to identify improvements to our existing symptom self-management booklet and apply these in the production of a digital resource. Initially, the symptom self-management booklet was distributed to 10 patients, awaiting further assessment and treatment, chosen by the multidisciplinary team following triage appointments. Two weeks later, 7 patients reviewed the booklet with 4 medical students by phone and qualitative and quantitative feedback was obtained from patients and carers. Quantitative feedback was collected using an adapted 20-point Ensuring Quality Information for Patients (EQIP) tool. Informed by this feedback, scripts were developed for the audiovisual resource. The scripts were further reviewed by a medical student, 2 multidisciplinary team members and 3 Trust Communications Department members.ResultsThe first QIP cycle highlighted the importance of the symptom self-management booklet. Most patients had used the booklet. Patients found it a helpful source of information. Two patients noticed a considerable improvement in their quality of life, others did not due to the short length of booklet use. . EQIP tool demonstrated an improved score of 80.51% compared to previous round of feedback (53.33%). Carers identified the booklet as reassuring. Additional links to external information was identified as an area for development.Patient feedback informed the development of scripts for the audiovisual resource. Consultation with the Trust Communications Department identified three themes of improvement: accessibility to patients, increased clarity and concise language, and an appropriate visual format, therefore scripts were further refined.ConclusionOur QIP shows the value of a psychoeducation and symptom self-management tool for FND patients which was positively received by patients and carers. Collaborating with patients in the digitalisation of this information allows for a more accessible resource which effectively addresses patient concerns and empowers symptom self-management.