“Nothing about me, without me”. Using user-centred design to develop evidence-based solutions to common problems in Motor neurone disease

Abstract

Supportive care in motor neurone disease (MND)/amyotrophic lateral sclerosis aims to promote independence and sustain life using assistive devices and interventions such as non-invasive ventilation. Success of these solutions depends on patient and carer acceptance and self-management but this is often hindered by the solutions’ failure to fulfil patients’ expectations or meet the complex and changing needs of those with MND. One reason for this problem is that they are not designed with the end-user in mind. Patients and carers highlighted the lack of a suitable collar for those with neck weakness. They also concurred with recent evidence that identified the need to provide better, evidenced based information to facilitate decision making, acceptance and self-management of gastrostomy feeding and non-invasive ventilation. Collaborations with patients, carers, clinicians and technology developers adopted iterative, user-centred design methods to develop and evaluate potential solutions based on research evidence and technology expertise and the lived experience of MND. The Sheffield Head-Up collar was developed and evaluated in a total of 126 patients with MND and other diseases. This affordable and adaptable collar was demonstrated to provide increased support while providing a greater range of movement, flexibility of use, and improved appearance and comfort and was preferred to traditional collars in 80% of users. MyTube (http://www.mytube.mymnd.org.uk) and MyNIV (http://www.myniv.mymnd.org.uk) websites use patient, carer and clinician stories to deliver evidence-based information about considering, starting and living with a gastrostomy and non-invasive ventilation. These websites are freely available and are now used by clinicians, patients and carers to support decision-making. Involving end-users, clinicians and designers in all stages of development of new solutions is key to ensuring that solutions will be acceptable, effective and evidence-based. We recommend ways in which the experiences of these experts can be harnessed in product design.