ALSFRS-R Online Validation Study
| Study title | Validation study of administration of an online Amyotrophic Lateral Sclerosis Functional Rating Scale (Revised) |
| UK Chief Investigator | Professor Kevin Talbot |
| Research summary | The ALSFRS-R is a functional rating scale designed to be administered by a healthcare professional asking a person with motor neuron disease (MND) a series of questions about activities of daily living that they are able or unable to perform by themselves. It is widely used in clinical practice and research. There has been previous research showing that people can complete the ALSFRS-R themselves online, using the original ALSFRS-R questions (Maier et al., 2012). This research showed that the scores on the ALSFRS-R completed by people with MND matched the scores from questionnaires completed by health professionals quite closely, meaning that a self-administered ALSFRS-R can be a scientifically valid way of measuring MND symptoms. We propose to modify the ALSFRS-R so that it is suitable for online administration by patients themselves, and to confirm that such an administration maintains its scientific validity while minimising any potential distress caused to people with MND by the wording of the questions. We have converted the ALSFRS-R scale to a series of questions to bring it in line with standard operating procedures and ensure the wording is free of medical jargon and is appropriately sensitive to people who have just received a diagnosis of MND. We hope to use this modified version of the ALSFRS-R in future research. |
| Inclusion/exclusion criteria | INCLUSION CRITERIA Participant is willing and able to give informed consent for participation in the study Aged 18 years or above Diagnosed with any form of motor neuron disease by a consultant neurologist. EXCLUSION CRITERIA Participant lacks capacity to give informed consent for participation in the study Aged under 18 years Any comorbid condition that in the opinion of the investigator would make interpretation of responses to the ALSFRS-R questions difficult No access to a computer or internet to complete the online questionnaire. |
| Current status | Closed to recruitment |
| Locations | Oxford London (King's College Hospital) |
| Contact details | Alexander Thompson - alexander.thompson@ndcn.ox.ac.uk |
| Recruitment group(s) | Patients with MND. |
| Recruitment target(s) | 100 patients. |
| Key dates | Actual opening date: 19 February 2018 Recruitment actual end date: 31 December 2021 |
| Funder(s) | Motor Neurone Disease Association (MNDA) |
| Sponsor | University of Oxford |
| Study design | Observational. Study administering questionnaires/interviews for quantitative analysis, |
| Intervention (if applicable) | Not applicable |
| Phase (if applicable) | Not applicable |
| Outcome measures | The main objective is to develop a version of the ALSFRS-R using patient-friendly language that can be self-administered online. The secondary objective is to evaluate participant satisfaction with the online version of the ALSFRS-R |
| Publications / Results reports | Links will be provided when papers are published. |
| Participant Information Sheet |