Mapping Evidence on Care Interventions for People Living With Motor Neurone Disease: A Protocol for a Living Evidence and Gap Map.

OBJECTIVE

To map the available evidence informing the care and management of people living with motor neurone disease (MND), including evidence pertaining to carers, asymptomatic genetic carriers, family, friends and healthcare professionals caring for people with MND.

INTRODUCTION

MND is a devasting neurodegenerative disease that has no cure and eventually leads to paralysis, progressive speech difficulties and respiratory failure. There are a plethora of interventions to support people living with MND, however, information regarding these interventions is often not organised in a manner that best supports the MND community. An evidence and gap map will provide a visual presentation that highlights the existing evidence that is available to support specific interventions, and indicate where there is no evidence. This will help inform future guideline and research efforts.

INCLUSION CRITERIA: Studies if they describe care interventions for people living with MND, carers, asymptomatic genetic carriers, family, friends and healthcare professionals caring for people with MND. Peer-reviewed randomised controlled trials, and nonrandomised studies of interventions, systematic reviews and qualitative studies describing the experience of an intervention will be included.

METHODS

An evidence and gap map will be conducted according to Campbell guidance and JBI guidance for scoping reviews. A comprehensive search of academic databases and clinical trial registries will be performed to identify eligible studies. An evidence inclusion framework has been developed with members of the MND community. Data screening and extraction will be independently performed by two reviewers. The evidence and gap map will be presented using EPPI Reviewer.

REVIEW REGISTRATION: This protocol has been uploaded to the Australian Motor Neurone Disease (MND) Guideline Open Science Framework page (https://osf.io/c2ezm/).