Review question
We planned to assess the evidence about communicating the diagnosis of amyotrophic lateral sclerosis (ALS) or motor neuron disease (MND).
Background
ALS, which is also known as MND, is an illness affecting the nerves that control movement. It causes increasing disability, including limb weakness, difficulty with breathing, and speech and swallowing problems. Most importantly, people with ALS/MND have to cope with the fact that ALS/MND usually leads to death within three to five years of onset. At diagnosis, people with ALS/MND, relatives, and carers can experience enormous distress, therefore, it is important to understand how to tell them the diagnosis. We carried out a wide search for randomised controlled trials (RCTs) of methods of communicating the diagnosis of ALS/MND.
Results
We found no RCTs of methods for giving a diagnosis of ALS/MND.
We searched to February 2022.
There are no RCTs that evaluate different communication strategies for breaking the bad news for people diagnosed with ALS/MND.
Focused research studies are needed to assess the effectiveness and efficacy of different communication methods.
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), causes increasing physical impairment and disability. People with ALS/MND face huge physical challenges, and the diagnosis can be a source of great psychological distress for both people with ALS/MND and their carers. In such a context, how news of the diagnosis is broken is important. At present, there are no systematic reviews of methods for informing people with ALS/MND of their diagnosis.
To examine the effects and effectiveness of different methods for informing people of a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), including effects on the person's knowledge and understanding of their disease, its treatment, and care; and on coping and adjustment to the effects of ALS/MND, its treatment, and care.
We searched the Neuromuscular Specialised Register, CENTRAL, MEDLINE, Embase, PsycINFO, and two trials registers (February 2022). We contacted individuals or organisations to locate studies. We contacted study authors to obtain additional unpublished data.
We planned to include randomised controlled trials (RCTs) and quasi-RCTs of techniques for informing people with ALS/MND of their diagnosis. We planned to include adults (aged 17 years or over) with ALS/MND, according to the El Escorial criteria.
Three review authors independently reviewed the results of the search to identify RCTs, and three review authors identified non-randomised studies to include in the discussion section. We planned that two review authors would independently extract data, and three would assess the risk of bias in any included trials.
We did not identify any RCTs that met our inclusion criteria.