Technology use among those living with MND
Research type
Research Study
Full title
Digital skills, internet availability, and preferences for remote monitoring among patients with MND.
IRAS ID
292953
Contact name
Esther Hobson
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Trust
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 2 months, 6 days
Research summary
This is a postal questionnaire study. People diagnosed with Motor Neuron Disease (PwMND) who receive their care in Sheffield will be invited to take part by letter. The study looks at PwMND’s use of technology and their views about using technology for care and clinical studies. The questionnaire asks about what type of technologies the person uses and what technologies, if any, they find difficult. It asks what the PwMND thinks about using technology to keep in touch with the clinical team in between clinic appointments. The questionnaire includes questions about clinical studies, for example questions around if the participant has ever taken part in a clinical study and, if not, if there were any reasons for this. It also asks what the PwMND thinks about taking part in a clinical study from home. A section describes a number of ways of making assessments of symptoms and behaviours at home (for example sleep monitoring , quality of life questionnaire, weighing scales) and asks the PwMND how valuable they believe these assessments would be and to rank their ‘top three’ most valuable assessments. PwMND are asked what the maximum number of assessments they would find acceptable and how often they would be prepared to do this. The final section of the questionnaire asks how much the PwMND agrees/disagrees with a list of potential advantages and concerns about digital technology. This study will allow the research team to understand the amount of technology use in the patient group and allow further studies in using digital technology at home to be tailored to the preferences of patients. The questionnaire was developed by a team in Utrecht and a version has been given to PwMND in the Netherlands and Ireland so we will be able to compare views of patients across several European countries.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
21/SW/0057
Date of REC Opinion
2 Jun 2021
REC opinion
Further Information Favourable Opinion