Telehealth for motor neurone disease

To the Editor: Telehealth is an expanding area with emerging evidence of use in the management of motor neurone disease (MND) and home mechanical ventilation.1-3 Here, we report our experience with the use of telehealth for managing MND in Queensland.

MND is a devastating disease with affected patients having an average life expectancy of 2–3 years. Progressive muscle weakness leads to the loss of speech and ability to swallow, inability to use arms and legs and, eventually, respiratory failure. Patients are usually reviewed in specialised outpatient clinics at major Australian tertiary hospitals.4 However, as the disease advances, MND patients find it difficult to attend these clinics because of advanced disability.

As in other centres in Australia, in Brisbane, the Royal Brisbane and Women's Hospital (RBWH) and, separately, The Prince Charles Hospital (TPCH) have multidisciplinary MND clinics that involve medical, nursing and allied health staff. Since 2008, a monthly MND telehealth clinic has been conducted (using a dedicated bandwidth, average 768 kbps) for patients across Queensland and northern New South Wales. Thirty-eight patients have been seen, an average of three times at 3–4-monthly intervals. This has meant that the patients have been followed for about 12 months beyond the last tertiary hospital visit. The average driving distance from Brisbane per telehealth event was 612 km (range, 158–1824 km). The local service was based in hospitals or community health services, with multiple-site login to the RBWH (MND clinical nurse consultant, neurologist and palliative care physician) and TPCH (sleep physician and sleep nurse).

The major problems addressed at telehealth consultations were symptom-based, dominated by the respiratory and palliative concerns. Practical support was provided for general practitioners for managing symptoms (such as excess saliva, immobility and communication problems), the use and withdrawal of non-invasive ventilation, and end-of-life support.

The advantages of telehealth over traditional outpatient clinics include the continued support by personnel who are experienced in MND. Skype and other technologies would allow even greater access, but have issues of confidentiality and security. Telehealth may also reduce the sense of hopelessness that MND patients feel: there is something intangibly positive about finishing a consultation with “so should we make an appointment for 3 months time?”