Baseline* | Postal questionnaires | Clinic visits | |||||
Baseline | 3 months | 6 months | 12 months | 18 months | |||
Patient characteristics | |||||||
Age, gender | X | ||||||
Frequency of technology use | X | ||||||
Broadband/mobile internet access | X | ||||||
Presence of difficulties using TiM | X | ||||||
Need for help using TiM | X | ||||||
Medical history | |||||||
Diagnosis | X | ||||||
Disease duration | X | ||||||
Comorbidities | X | ||||||
Drug history | X | ||||||
Quality of life | |||||||
ALSAQ-40 | X | X | X | X | X | ||
RAND-36 | X | X | X | X | X | ||
EQ-5D+D | X | X | X | X | X | ||
Clinical measures | |||||||
ALSFRS-R | X | X | X | X | X | ||
Pain score (current and worst)† | X | X | X | X | X | ||
CSS-MND | X | X | X | X | X | ||
Hospital Anxiety and Depression score | X | X | X | X | X | ||
Survival | X | ||||||
Adverse events | X | X | X | X | X | ||
Health resource use | |||||||
Clinician encounters† | X | X | X | X | X | X | |
Hospital admissions† | X | X | X | X | X | X | |
Informal care use† | X | X | X | X | X | ||
Formal care use† | X | X | X | X | X | ||
Satisfaction | |||||||
MND care satisfaction† | X | X | X | X | X | ||
TiM satisfaction† | X‡ | X‡ | X‡ | X‡ |
*Collected by investigator.
†Questionnaires designed for the trial.
‡Intervention arm only.
ALSAQ-40, 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire; ALSFRS-R, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised; CSS-MND, Clinical Saliva Scale for Motor Neuron Disease; EQ-5D+D, EQ-5D + dignity bolt-on; MND, motor neuron disease; RAND-36, Rand 36-Item Health Survey; TiM, Telehealth in Motor neuron disease.