Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis (Review)

Cochrane Database of Systematic Reviews, 2023 · DOI: 10.1002/14651858.CD007593.pub2 · Published: February 1, 2023

Simple Explanation

This review examines different methods for informing people about a diagnosis of amyotrophic lateral sclerosis (ALS) or motor neuron disease (MND). ALS/MND affects nerves controlling movement, leading to increasing disability and a typically fatal outcome within 3-5 years. The review sought randomised controlled trials (RCTs) assessing how to communicate ALS/MND diagnoses, focusing on impacts to knowledge, understanding, coping, and adjustment to the disease and its care. The review found no RCTs evaluating different communication strategies for delivering an ALS/MND diagnosis. The authors emphasize the need for focused research to determine the effectiveness of different communication methods.

Study Duration

Searched to February 2022

Participants

Adults (aged ≥ 17 years) with a diagnosis of ALS/MND

Evidence Level

Systematic Review

Key Findings

1
No randomized controlled trials (RCTs) were identified that evaluated different communication strategies for breaking the bad news to people diagnosed with ALS/MND.
2
The review highlights a significant gap in research regarding effective methods for communicating an ALS/MND diagnosis.
3
The authors suggest that ethical concerns and the interactive, unpredictable nature of breaking bad news may contribute to the lack of RCTs in this area.

Research Summary

This Cochrane review aimed to assess the effects and effectiveness of different methods for informing individuals about a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), focusing on their understanding, coping, and adjustment to the disease. The review searched several databases and trials registers up to February 2022 but found no randomized controlled trials (RCTs) or quasi-RCTs that met the inclusion criteria. The authors conclude that there is a lack of evidence from RCTs to guide practice in communicating an ALS/MND diagnosis and emphasize the need for future research in this area.

Practical Implications

Clinical Practice

Clinicians currently lack evidence-based guidance from RCTs on how best to communicate an ALS/MND diagnosis.

Future Research

There is a pressing need for detailed and focused research studies to assess the effectiveness of different communication methods for informing individuals with ALS/MND.

Ethical Considerations

Future research must address ethical concerns related to randomizing individuals when delivering a diagnosis of ALS/MND.

Study Limitations

1
Absence of randomized controlled trials (RCTs)
2
Difficulty in controlling variables such as ongoing support and coping strategies
3
Potential ethical concerns in randomizing people during diagnosis communication

Your Feedback

Was this summary helpful?

Back to Neurology