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Clinimetrics and Outcome Measures

Leads: Dr. Dara Meldrum and Dr. Deirdre Murray
Contributors: Hannah Moloney, Rachel Tattersall and Finbarr Conroy

Motor neuron Disease results in a decline in muscle strength and thus decline or loss in a range of physical functioning constructs including respiratory function, mobility, activity, upper limb dexterity, speech and swallow. The rates of decline have not been well defined in many of these constructs and ordinal outcome measurement scales such as the ALSFRS-r, although useful, lack sensitivity throughout the course of the disease.  This is a significant limitation in providing prognostic information and in evaluating the outcome of new clinical interventions.

Quantitative measurement of clinical and personal characteristics requires specific and sensitive assessment tools. Developments in health assessment and monitoring technology provides an opportunity to replace insensitive ordinal scales with sensitive measurement devices, including accelerometers, pressure sensors and novel blood gas monitors.

Longitudinal measurement of respiratory function is well developed in the clinical environment and routine assessment including vital capacity, cough strength, sniff nasal inspiratory pressure and pulse oximetry provide sensitive data, which informs respiratory management. However, monitoring between clinical visits is limited and early detection of respiratory compromise may not be achieved.

We aim to develop a toolkit of sensors targeted at sensitive measurement of relevant constructs, identified in the ALSFRS-r, which will provide sensitive data regarding function and decline in function in MND. These include remote monitoring of activity, falls and respiratory function, and sensitive clinic based assessment of gait, dexterity, speech and swallow. We aim to develop this toolkit with research and industry partners…….