Facilitating access to specialist care for patients and carers living with motor neurone disease using telehealth.

Care of patients with motor neurone disease (MND) is best provided by a specialist, multidisciplinary team but access to this care is not universal. Technology-enabled care has the potential to improve access to specialist care in MND. A telehealth system (TiM: Telehealth in Motor neurone disease) was developed to allow patients and carers to share information about their condition using the internet with a specialist MND nurse. An 18-month, mixed methods, randomised, controlled pilot and feasibility study was conducted and a process evaluation explored the use, feasibility, acceptability and potential impact of the TiM system. Clinical outcomes (such as quality of life) were collected and semi-structured interviews with participants and clinicians were conducted. 40 patients and 37 carers were recruited and randomised to receive usual care or usual care plus the TiM system. Participants and clinicians felt that the TiM system was an acceptable and feasible way of improving access to specialist care and thought it could have the potential to improve their care. Formal comparisons of the two treatment groups were not aims of the trial but only modest differences were observed. The study identified further necessary improvements to the TiM, particularly focusing on the way clinicians act upon the information received and interact with patients and carers. The trial methods appeared to be feasible. The main challenge posed by a definitive trial appeared to be how to effectively measure impacts of the TiM on participants and the clinical service. This thesis recommends that the next step of TiM development should include further iterative improvements to TiM system in parallel with research that explores how the system would be used best in different MND services. If these evaluations also suggest the TiM system offers value, a definitive randomised controlled trial may be feasible. However, this thesis identifies better ways to further evaluate this complex intervention.