Guidelines addressing Motor Neurone Disease (MND): a scoping review.

Area of Science:

• Neurodegenerative Diseases
• Health Policy
• Evidence-Based Practice

Background:

• Motor Neurone Disease (MND) is a severe neurodegenerative condition impacting patients, families, and carers.
• Evidence-informed care is crucial for improving outcomes in MND.
• Existing guidelines are limited, with none specifically developed for the Australian context.

Purpose of the Study:

• To identify existing health and social care guidelines for Motor Neurone Disease (MND).
• To assess the quality and scope of current MND guidelines.
• To inform the development of a new guideline for Australia.

Main Methods:

• A scoping review was conducted using Joanna Briggs Institute (JBI) methodology.
• Guidelines addressing health and social care for people with MND, gene carriers, family members, or carers were included.
• Data were extracted and analyzed descriptively, with qualitative content analysis of guideline questions.

Main Results:

• Forty-two guidelines were included, addressing 133 questions, primarily focused on symptom management.
• Most guidelines were produced by professional bodies, with few utilizing GRADE methodology or systematic reviews.
• Only seven guidelines assessed risk of bias, and no guideline was developed specifically for Australia.

Conclusions:

• A significant gap exists in high-quality, evidence-based guidelines for Motor Neurone Disease (MND).
• There is a need for a comprehensive MND guideline developed using best practice methods, particularly for the Australian context.
• Improved guidelines can support evidence-informed care for individuals with MND and their support networks.