Background and aims

Based on the Trajectories of Outcomes in Neurological Conditions (TONiC) methodology from the Walton Centre, Liverpool, we are exploring trajectories of patient experience in PD and MND. Both MND and PD are complex diseases where genetic predisposition and environmental factors interact. One aim is to characterise the less well-understood non-motor symptoms of MND and PD, their influence on quality of life (QoL), and investigate any possible influence upon non-motor symptoms and translate findings into more comprehensive clinical care.

Methods

A longitudinal design with 6 to12 monthly administration of questionnaires of validated patient-reported outcome measures (PROMs) to people with MND and PD. These encompass domains such as physical functioning, dyspnoea, fatigue, sleep, pain, anxiety, apathy, depression, disability, quality of life, coping, hope, social withdrawal, self-efficacy, self-esteem, stigma, worry, clinical and community communication, and health-related costs.

Results

Recruitment is ongoing. Currently have recruited 30 MND and 76 PD participants.

There is no difference between the two groups in sex and age.

Longitudinal analysis (MND, 7 timepoints, baseline to 36 months; PD 3 timepoints, baseline to 24 months) showed differences between the 2 groups. The MND group had statistically significant differences across time points for physical functioning, handicap, disability, fatigue, anxiety, depression, worry, self-esteem, coping, hope, social withdrawal, self-efficacy, and stigma. The PD group showed statistically significant differences across timepoints for disability and function.

Discussion

The differences between patient reported outcomes for MND and PD are largely due to physical functioning associated with disease trajectory.